Nick's Myeloma Blog

Eye on the Prize

2012-01-05T14:53:00.000-08:00

Well folks I'm so far behind here and I'm very sorry about that! I do have stuff to post as I said before, just been busy. The highlights, if I had to put them in bullet points:

* Velcade gives me gastroenteritis weekly now. Not pleasant. Managing pain with Vicodin as needed. Annoying, but I'll live with it.

* Very interesting debate on curability with BB representing the cure side and a very smart Mayo doctor representing the non-cure side. Finally heard the non-cure argument: they don't believe the line in the Arkansas recurrence curve flattens. Bart says they are looking at old data, and it does flatten. Simple as that.

* Mindful that it's no guarantee, I should mention a good friend of mine, also BB (but not the BB who recently passed away) was in the same boat as me and has lost remission. This is not very good news, as it means his disease is now resistant to Velcade and Revlimid. But BB is sticking with BB who will have a plan. Meanwhile, fingers are crossed!

* I've also noticed that the curve doesn't flatten after three years of therapy...it's mostly flat there but the real plateau isn't reached until about four or maybe a bit more years of maintenance post-remission. I had been thinking about how long I wanted to continue with the meds...I don't like the side effects but I also don't like the thought of a few cells not getting with the program (see my previous bullet point) and causing trouble after I let up. So I'd been toying with the idea of asking to stay on maintenance at least one more year after my three-year anniversary comes up.

With this in mind, a reader with whom I have corresponded before emailed me today to say that he's been able to stop all therapy after 4.5 years of maintenance. He was told, in that beautiful definitive way that only BB can deliver, that "your myeloma is gone and IT WILL NOT COME BACK."

BB is not cavalier. He doesn't say that until he's sure. That's the prize though...and my eyes remain on it. So with every little bout of gastroenteritis or other GI issues or a botched fingernail that won't heal, I keep focus.

Happy New Year and good health to you all! More to come soon.

In memoriam...Bruce Bertsche

2011-12-07T10:00:00.000-08:00

I have a few updates to post in the next few days: gastroenteritis / gastritis, an interesting debate on curability versus control, some studies on the linkage of Revlimid with second cancers (or the lack thereof), etc.

But first, I want to talk about my friend Bruce. It's taken me a few days before I was ready to say anything, so sorry for the delay in posts.

I met Bruce and his wonderful wife Jan during my treatment -- they came to Arkansas during the middle of my treatment after reading this blog and other discussions with friends and medical professionals. We hit it off immediately.

Bruce was dealt a far worse hand than I. His disease was very difficult to detect -- his Myeloma did not appear in his blood, or in light chain analysis. It could only be found on imaging and via bone marrow biopsies.

I don't recall the extent to which Bruce had been treated before arriving in Arkansas, but he had already suffered terrible bone involvement and lost partial sight from the disease. He was diagnosed with a high risk variant, for which outcomes are indeed dire. Most people elsewhere are given a year to 18 months. Bruce, as it happens, survived about twice that long. During his treatment, the disease left the blood system and metastacized through his body. He dealt with it spreading to his liver. He dealt with other cancers (unrelated, most likely, but which capitalized on his weakened immune system) that required surgeries. He suffered terrible pain, and endured the strongest medicines there are which wreaked havoc on his body and left him fatigued beyond most people's ability to reckon.

Through it all, he maintained a quiet dignity and grace that was inspirational to me, and through it all his wife kept her faith, her sense of humor and her compassion -- and never once became bitter despite this terrible curveball that life threw at their family.

Through the past three years, we kept in touch and whenever our schedules in Arkansas coincided, we tried to connect for dinner or a nice bottle of wine. We both found it comforting to run into each other at the clinic...we'd been in the trenches together.

At the end, Bruce remained responsive to the medicines that BB was cooking up for him, which included Carfilzomib. Unfortunately, en route to the clinic for treatment he suffered a cardiac event of some kind. Whether this was brought on by the disease, the treatment, the general run-down state in which he found himself or whether it was completely unrelated, is at this time unclear. What is clear, though, is that Bruce is no longer suffering.

I would like the thoughts and prayers of this little community, which played such a hugely beneficial part in my own therapy and recovery and which continues to inspire me on a weekly basis, to turn to Jan and the rest of the Bertsche family. We all lost a very good man.

God bless you, Jan. We love you.

Overdue for a catchup...notes on three years post diagnosis, etc.

2011-11-17T15:44:00.000-08:00

Howdy folks. Been busy as a beaver in my job, so I've been scarce around here. Sorry about that!

I've endured a couple of misadventures over the past few weeks. I had a nasty bout of what turned out to be gastroenteritis late last week that laid me up for a couple of days with pretty wretched abdominal pain. Not sure how I got it -- the family was all sick but I managed to avoid coming down with whatever they had...unless it got into the GI tract somehow.

Two days of Vicodin (one day of Oxycontin, since the Vicodin wasn't cutting it!) and some Levaquin and I felt better. Then it somehow came back three days later, this time for only 24 hours. It's now 48 hours behind me and hopefully not returning...

I've also learned that I've got some tiny pre-cancerous spots on my forehead. These are, I am told, normal in someone my age (43) and not in danger of being malignant, and that they are easily frozen off, with minimal chance of recurrence, and if they do return, it's unlikely they will become cancerous, and if they do become cancerous, they will almost certainly be benign rather than malignant. So I'm not terribly worried, and I shall attend to them soon.

I've also finished the Steve Jobs biography, which is fascinating...I will only say one thing to my dear curcumin friends...dietary stuff often doesn't work. Jobs tried it, hated the idea of pursuing aggressive treatment. And it was responsible, sounds like, for him not catching his tumor before it spread. Had he gone the Western medicine option, he might be alive today. The author strongly implies he regretted his decision.

Lastly, I suppose I should say something about the anniversary of my diagnosis, which came and went unheralded a few days ago. It's been an interesting, harrowing, enlightening, frightening, terrible and hopeful ride. Not a day goes by that I don't think of all the people that through this blog gave me support, kind words of encouragement and strength during the worst of it -- thank you all so much. And hardly a day goes by when I am not contacted by a newly diagnosed patient or a friend of a newly diagnosed patient. One of the great things in my life is counseling the newly-diagnosed...so please keep reaching out. If I can be helpful in any way, I want to be.

Overall...I feel good. I won't be sad to leave these medicines behind a year from now, but I've been through 2/3 of my maintenance program, and I do believe that a year from now, I will be cured. Not an operational cure, not it'll be back in six years, not "we'll wait and see." Cured, as it no more meds for Myeloma and a statistically insignificant chance of it ever returning. That's been the gambit.

Of course my hope is that before that time, a much less invasive cure arises...one that will leave me laughing ruefully at the need for tandem transplants and overjoyed that others will be able to be rid of this. That day will come, eventually. Let's hope it happens soon!

The next major milestone for me is my check-up in Arkansas in March, but I will be back before then, for sure. Happy Thanksgiving to you all!

Quick observation on Velcade...

2011-10-10T14:51:00.001-07:00

So I was out of the country last week and for the first time in two years of maintenance, missed a Velcade infusion. I'm told I'm allowed to do that twice a year and remain on protocol, so no biggie.

However, I did notice I did not have gastroparesis. Thus, my brilliant powers of deduction lead me to conclude that it is Velcade, and not Revlimid or Dex, that is the culprit.

This may be of use the others, hence my posting it. I have a checkup with my local onc tomorrow and will post whatever news is merited!

Belated reporting of last checkup

2011-09-27T09:50:00.000-07:00

Where has the time gone? Children are back in school, my band (a time-consuming project) has been rehearsing for a brief European tour of sorts, and my job remains a demanding one. Life is busy!

I had a good checkup in Arkansas. I remain in complete remission. But it wasn't a perfect one.

First, there was a brief scare when my bone marrow biopsy came back with 13% plasma cells in the aspirate, 10% in the core. Recall, gentle readers, that the core marrow is more important since that is where new cells are being generated.

At any rate, such a level of plasma cells was deemed "abnormal plasmacytosis" on my chart, with several studies still ongoing. The core was negative for myeloma, so that much was good...but I didn't like the number of plasma cells.

I was pretty unnerved for about an hour until the physician's assistant CR came in and said it was likely high because I was recovering from a cold. He had a cold himself, and suggested that his plasma cells were probably 30% right now. Even as I exhaled, my mind went back to a conversation with Kathy Giusti from around my diagnosis where she had said that it's a bad idea to have a blood test, even, when you have a cold since immunoglobins all shoot up at that time. Well, the blood was negative for Myeloma, and it all looked good. But I think there was some residual reaction from my immune system, hence the plasma cells. In any case, no big deal.

I was somewhat saddened, though, to look at the MRI and see that the last four little lesions in my spine are stable -- I was hoping they would fully resolve. BB was somewhat perturbed by this same thing. So he prescribed more Zometa. I'll return in six months, and we'll see what things look like then. In the meantime, I'll continue to get my cancer markers every two weeks from the lab out here. I anticipate there'll be nothing of note.

Twelve more months of maintenance, hopefully, and then we'll see how to transition off drugs and what my immune system looks like. Will I be on Acyclovir for the rest of my life? Will I need to be reimmunized? Can I expect my immune system to recover and behave normally? Interesting and important questions for a Myeloma patient.

There's more to report but work calls...so I'll fill you in on the other stuff in the days ahead.

A very cool dialogue with an online MM presence treated very differently than I...

2011-09-21T10:32:00.000-07:00

Hello folks. I will shortly be giving you an update on my visit to Arkansas last week (which was good, still in complete remission, a couple of mildly unsettling things to report but nothing major).

But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment. Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc. I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment. I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.

Anyhow, what set this apart was not so much the questions but the other person doing the answering. As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson. I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment. David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about. I remember David being a fan of alternative medicine. I've joked before that the three approaches to treatment are: cure, control and curcumin! But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.

David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry). David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel). But we couldn't have arrived there more differently. David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy. He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.

Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy. I'll spare you the counterarguments. Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.

I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation. Wouldn't it be nice if we could make that happen in politics? :)

I'm a pragmatist. I'm much more likely to be cured of cancer than that is likely to happen. :)

Dosing to keep the ol' GI tract working...

2011-09-01T12:49:00.000-07:00

After last week's disaster, I figured I must be doing it wrong.

I looked at my bottle of Reglan (so funny that I thought it was Ragalin, most likely because of the folksy pronunciation in Arkansas!) and checked the dosing instruction. It was carried over from when it was prescribed to me as anti-nausea (probably coming out of a bone marrow or something with anesthesia) where it said to take one pill the night before "your procedure" and another the next day.

Because of this imprecise instruction, and based on the suggestion of JA, one of the physician assistants, I had taken one on Tuesday evenings (with my dex) and one the next morning, and one the next night.

This approach failed miserably last week.

So I use the Google Machine on the Interwebs and found that when prescribed for gastroparesis (med-speak for "gut shuts down") one takes one pill 30 minutes before each meal, then again at bedtime.

I tried that approach this week, and it seemed to work better than last week, certainly.

In other news, fraternizing with the children of other parents for a few days in a family resort has led to me getting sick. No big surprise there. I am hoping I caught it early enough and started taking Tamiflu in time to cut off bronchitis. So far, day three of sickness, just a tiny dry cough to go with the nasal stuffiness, swollen glands and sore throat. Time will tell.

There is a silver lining, though: proof positive that I must continue my policy of avoiding the enormous fair at my daughter's school!

Thoughts on two years of maintenance...full list of side effects, meds, etc.

2011-08-28T12:10:00.000-07:00

Hello friends. Sorry to take so long between posts but there's been precious little to update you on and I don't want to just blabber without having a point! : )

On Tuesday I start the last week of the 24th cycle of maintenance, which means in a few days I will have finished two years of drugs. Velcade, Revlimid and Dex as most of you know, are the three primary agents. On top of this I add host of drugs for supportive care, as follows:

Revlimid suppresses the immune system and leaves me susceptible to shingles. Therefore I take daily Acyclovir.

Revlimid can cause peripheral neuropathy. Therefore I take daily MetaNX, a variety of B vitamins that have been shown to reduce neuropathy among Alzheimer's patients.

Revlimid can causes blood clots, or deep vein thrombosis. Therefore I take daily aspirin as a preventative.

Revlimid suppresses platelets. I don't take anything for this, but it is part of the reason which I take one week off the drug every four weeks -- to allow them to recover. I take the aspirin to thin the blood despite this thrombocytopenia (low platelets) because it evidently is a different type of clotting that causes DVT. At any rate, keep the low platelets in mind...

Revlimid causes hideous leg cramps, which can be prevented through quinine (which I would strongly prefer, except that it suppresses platelets...so I don't go that route). The only other route is to take magnesium supplements. Through trial and error, I take 750mg of Magnesium a day. Any less than this and I run the risk of waking up at four in the morning with a rusty hook in my leg (or at least that's what it feels like). 750mg of Magnesium a day is essentially like finishing the day with three shots of a powerful laxative. Every day.

Dexamethsone causes pretty severe acid reflux, so I take Pantoprazole as needed (usually the night I take Dex and the following night) to keep this at bay.

Dex also keep one awake, so I take Ambien or Ativan / Lorazepam 1-2 nights a week to ensure I get a decent night's sleep

Which leaves Velcade. Velcade causes flu-like symptoms, nausea, etc. and generally the Dex (in addition to fighting Myeloma) helps to offset these symptoms by suppressing immune response so you don't get the fever as much, don't get the swelling, aching, etc. that comes with the flu, etc.

Velcade, though, I have found, shuts off my digestive system. This is not particularly unusual, I am told. In fact, I just learned there is a name for it: gastroparesis. But I get the infusion on Tuesday afternoon and I find that by Wednesday, things have shut down, and they don't resume until Friday AM. That means anything I eat Wednesday or Thursday sits in my stomach, undigested, making me feel horribly bloated.

This is without a doubt the worst of the side effects of my treatment. And the last time I was in Arkansas, they suggested I take Ragalin / Metaclopramide, which is used to treat gastroparesis. I have taken one pill the evening I take Dex, then one pill the next morning and evening, and again the next morning and evening.

Sometimes this works.

This last week, while on vacation with the family, it did not.

I found myself with the worst vomiting and nausea I've had at any point since diagnosis, which took me out of commission from 3PM in the afternoon through the next morning. I couldn't even keep down the antinausea pill. It was pretty rough.

I will take this up with the good folks in Arkansas when I see them a little more than two weeks from now. Hopefully they will come up with an alternative that works better.

I receive 2.5ml per week of Velcade. Times 100 infusions, that means...gadzooks...2500ml of Velcade. Have I really had 2.5 LITERS of this stuff pumped into me by now?

Toward what end, one might ask?

Well...

Okay, not the first time I have shown this slide. I'm now at the 2 year point of CR, on the low-risk slope. About 92% of people, having reached complete remission under Total Therapy 3 (which includes Velcade) are still in remission at this point. At around year 3.5, the line flattens out. I will get an update on this chart, which is a couple of years old, when I get to Arkansas but the point is: if it hasn't come back by year 4, it ain't coming back. About 89% of people that are low-risk and who reach complete remission are cured.

If I take 89/92, that's 96.7%. So as of now, I have a 96.7% chance of being cured. Pretty damn good odds, I'd say!

So that's why I continue. One more year of this and hopefully I'm done...although frankly I wouldn't mind continuing to the 3.5 year point because that when it fully flattens out. But doing so will require them to find a better solution for my gastroparesis / barfitis.

Embrace your inner biting monkey

2011-07-06T04:43:00.000-07:00

I've met many very interesting people in my line of work, but few are more interesting than my friend Dr. EH.

Dr. EH (his Ph.D is in something related to neuroscience) was formerly a very senior R&D technologist at the company for whom I work. He then went on to a very senior position in the US intelligence community. Now he does some consulting with us and I have the opportunity to chat with him every now and then about everything from technology at our company to some of what's going on in Iraq and Afghanistan (the declassified portions!). I had the pleasure of having lunch with him yesterday.

Another colleague at work has been through much more, cancer-wise, than I or, really, most people. About 20 years ago he was diagnosed with a type of cancer (don't know what, exactly, but it affected his esophagus, jaw / neck, tongue, throat, etc.) that was Stage 4, metastatic and very nasty. He went through a number of experimental procedures and has beaten it. And he's now working with the doctor at Sloan Kettering who saved his life to put together a program to help doctors communicate better with their patients that are diagnosed with cancer. EH is working with them both on this project.

So yesterday EH asked me my thoughts on the matter. He wondered, for example, if information was enough, or if a doctor needed to let a patient work through the emotional response for a few days before absorbing any more -- unless of course it's something like AML where you need immediate treatment (as in check the person into a hospital and administer chemo that day).

It's a complicated question, I told him, and it depends on the type of cancer. A person diagnosed with advanced pancreatic cancer, where the outcome is dire and fairly certain, will have different needs than a person diagnosed with an early stage hard cell tumor that can be removed. And yet both of these situations are fairly cut and dry. In the middle, we have Myeloma, where no two doctors seemingly agree on exactly what to do -- in fact doctors can't even agree on whether or not it is curable. There aren't many who believe it is, and yet BB sees more Myeloma than any doctor anywhere in the world. Consider that for a moment: more than any doctor anywhere in the world. He has 20-30 new patients a week. My diagnosing doctor SH, who is by all accounts a very good hematologist who sees a fair amount of Myeloma, told me he does maybe 10 transplants a year. Barlogie and his team do literally hundreds.

I digress...

Anyhow, another part of the challenge is the subjectivity involved in parsing the information. Quality of life, for example, is an extremely subjective measure. For me, while I've got to take these meds and while I've got side effects (including insomnia on dex nights, which explains my 3:30AM blogging) they are totally manageable and don't affect my quality of life that much. I have a good quality of life -- though certainly I look forward to being off meds and having an even better quality of life. But others would view my weekly dosage of Velcade, my daily Revlimid and my weekly Dex -- all of which do have side effects -- as a not-so-great quality of life. Some would certainly view my having to move 2,000 miles away for six months as a big hit to quality of life -- and I would agree. But it was six months, and tolerable. Others' mileage may vary...everyone answers these questions differently based on their own experiences, their own expectations from life, their attitudes, belief systems, age, etc.

I'd be very interested in knowing, from those of you who have contended with a diagnosis of Myeloma or any kind of cancer, what was or would have been helpful for you to hear when you were diagnosed...in terms of assisting you with understanding your diagnosis, coming to terms with it, and making decisions.

But that's only part of this post. We talked, then, about attitudes and how they impact treatment outcomes. I told EH that despite my being a spiritual person, I believe the brain is just another organ in the body, and one's attitude is therefore directly linked into the rest of the system. A brain set to kick the hell out of cancer versus a brain resigned to succumbing to it will have an impact on how the rest of the body handles treatment.

EH said that we definitively know this to be true -- that the brain is physiologically linked to the immune response, for example. This made me think about letting down my immune system which I'm sure led to my cancer, but also to being shaken awake and being resolved to handle whatever treatment dished out and to beat my Myeloma. So far, so good -- and I'm very fortunate that I've responded as well as I have to treatment because it's one thing to have confidence when things are working, and another to have confidence when they're not working so well. I had a few days of doubt -- search my blog for the phrase "noonday devil" -- when I wasn't seeing the markers go down. And those days were not fun. So once again, I am humbled by the grace of others who deal with more dire prognoses than I.

EH then said -- and I apologize to any animal-lovers, because I also felt a twinge when he said this -- that "in the course of my training, I've operated on a lot of monkeys. Some of them, when they came out of surgery, were just kind of down and depressed. They didn't last too long. But others, when they emerged from anesthesia...their first act was to try to bite you." He smiled. "Those ones tended to be okay."

So the message: be the angry, biting monkey in the face of cancer. Not the depressed, resigned monkey.

I have a friend going through a transplant right now, and another friend who is going to do one later this year after another surgery -- so this means you, guys!

In discussing this with EH, I observed that in my own case, I never allowed myself to believe I was going to die from Myeloma. I was certainly helped by finding a doctor who believed he could cure me, and, as noted, by my response to therapy. I wonder, also, where the Kubler-Ross "denial" stage of dealing with a crisis ends, and where my resolve in the face of diagnosis began. Was I perhaps just mired in the denial stage the whole time? Who knows.

I think about something like a transplant...how the book I read when I was diagnosed treated it as this monolithic, dreadful / awesome event and how I will consider it "my birthday." I contrast that with my approach: but for this blog and a good quantitative recall of things related to my therapy, I couldn't tell you my transplants were. My birthday is the same as it's been for 43 years. My transplant date isn't my birthday any more than my hernia surgery was, and probably less so than my LASIK procedure on my eyes. Similarly, I remember the attitude of one of the nurses in the infusion center: "Ah, melphalan's no big deal." No big deal. You can do it. You're bigger than cancer. The angry monkey is too cool to fret about a little chemo. The angry monkey has some swagger to him.

But EH also pointed out something important: cancer has a vote, too. He lost his wife to cancer -- and she was strong-willed, did not allow herself to believe she was going to die, and fought like hell. And it didn't matter. So resolve only goes so far. That, also, is humbling.

So where does that leave us? Well, everyone is different. I saw people in the clinic that didn't want to know what they had, didn't have any tolerance for understanding what treatment entailed or what the statistics behind the program where, and had no hope. I saw people like myself who took a different approach. I think, all else being equal, those who took an empowered approach have and will fare better. But "all else being equal" is a very big qualifier, indeed.

Food for thought.

As for me, I find myself of late disliking the side effects of my meds, but reminding myself with each swallow of Revlimid and Dex to mentally think "[expletive deleted] you, cancer!" before I swallow these pills. Whatever discomfort they cause me, it's 100X worse for whatever rogue cells I've got kicking around inside me. Although they don't show up on any tests, I've got somewhere between 100,000 and 1 billion cells (probably much closer to the first number now) that aren't with the program. So to hell with them.

And that's enough out of this angry monkey for the day.

Two Musketeers and a Guy with a Wet Hacking Cough

2011-06-23T17:56:00.000-07:00

Years ago, that was an entry on a David Letterman Top 10 list for "least favorite candy bars."   I remember the #1 entry was Johnny Bench's Nut Clumps.

Anyhow, I feel like that third guy and have for some time. There was a bad cold going around the office, and my adorable little boy Carson was coughing, and it was just a matter of time until my immune system gave way.   I'm not complaining -- I've been very fortunate in that I've not been sick this year, I don't think, and considering both my kids and my wife have had the stomach flu and I was helping my poor son with his uncontrollable vomiting at 2AM, I'm damn lucky that I didn't get that.

So a bad bronchial condition that probably went from bronchitis to pneumonia is a mild issue, really.   I got a course of amoxycillin from the good folks at UAMS and that's more or less knocked it out.   I was out of Tamiflu when I first started getting the scratchy throat and had that not been the case, I might've knocked it out before it got bad.   Note to self: always keep Tamiflu on hand.

Minor problem with that: insurance doesn't cover it.   And it's about $100 for a 10-pill box.   Gulp.   So it's $50 to get rid of a bad cold quickly, essentially.   Probably worth it in the grand scheme of things.

Anyhow, it's on the way out now, though it's been here for about 10 days and I'd love it to be gone now, thankyouverymuch.

In other news, I decided to be a bit more militant about taking Ragalin -- an anti-nausea drug that supposedly also keeps the digestive track rolling -- whilst taking my reduced dose of Dex (down to 8mg a week).   I tried this the previous week and it didn't really help. I still had the feeling that anything I ate from Wednesday AM was still in my stomach come Friday morning. It's a rotten feeling, believe me.

But this week, I took a Ragalin with Dex on Tuesday night, another one Wednesday morning, and another one last night and I don't feel nearly as distended and gross as I did the previous week. Of course I'm also taking magnesium pills for the Revlimid-induced cramps, and the magnesium does ward off constipation brought on my the combination of antibiotics, Velcade, Revlimid and dex.    Incidentally what could be gently called "ward off constipation" on Tuesday and Wednesday night becomes "turns you into a booster rocket gripping the toilet seat for dear life" by Thursday.   But then these are minor things compared to the leg cramps so I've adjusted to the new normal.

15 more months to go, give or take.   Although frankly I wouldn't mind sticking on this stuff another year since the longer I stay on it, the more definitive the cure signature is.   I'm sure I could go off it after 3 years, since that's what BB says is enough. Yet I also learned from my last dinner with BJ that there are people alive post TT2 and TT1 20 years later who are taking Thalidomide despite the fact that it's certainly lost its effectiveness.

I'll worry about abandoning my security blanket when the time comes. As alluring as the final endgame to this interesting if undesirable match of GI chess has been for the last 26 months, I wouldn't mind saying goodbye to it!

Vanity, a caution against supplements and a thankful false alarm

2011-06-15T18:12:00.000-07:00

Hello peeps.

It's my birthday today...43. Since I was diagnosed at 40 and had no idea if I would reach 43, I'm a pretty happy camper, despite a grueling work schedule that has not permitted me much time for anything recently, including updates.

But yesterday, I had quite a scare for a little bit, and thought it was something that some of you might learn from. Don't be me, basically!

I've counseled some friends going through myeloma treatment -- they know who they are if they are reading this -- that they shouldn't worry about silly little things like losing your hair. Whether you want to pursue cure or control, effective treatment of progressive disease will at some point involve a transplant. I say that with the knowledge of Dr. JB's position. It doesn't change my opinion one iota.   And my comment to my friends is thus: hair grows back, the disease absent treatment will kill you, wear a freakin' hat for six months for pete's sake and deal with it. It's not a big deal.

Having said that, one of the side effects of dex is weight gain. I got pretty tubby after about nine months and two transplants and so I rededicated myself to eating better and drinking water instead of wine (some of the time!) and that helped, but I also started taking a supplement called 7-KETO that supposedly boosts metabolism.   This helped, I think -- or perhaps it was placebo effect -- but I lost about 20 pounds and have kept it off and while I'm not yet where I want to be, it's a noticeable improvement.   I know this because Dr. BB no longer says "let's call it what it is: you're fat!" when he sees me. (Note: he actually said this, verbatim!)   Now, he says I look great. And we know BB is honest to a fault, so there you go.

I checked with one of the physician assistants at UAMS before starting this supplement of course. He was not familiar with it but I explained what it was, using the description of ingredients from Amazon, and he said it sounded fine.

Six months later and several re-orders of the pills later (taking them twice a day), I did a larger re-order on Amazon. The pills arrived, and they were slightly larger and a different color. I popped one and then decided to take a look to make sure they hadn't changed the formulation -- that the size and color were simply because they were a larger dose or something.

This pill, I was MORTIFIED to read, contained a large amount of green tea extract. Now I know green tea is the one thing I'm not supposed to have since it's contraindicated while on Velcade. But I thought it might inhibit absorption of the Velcade on the day of administration, or perhaps increase nausea or something like that. So I did a little research and became even MORE mortified.   From Blood magazine, the mellifluously-titled publication of the Hematology gang, I learned that green tea extract appears to basically BLOCK the anti-cancer effects of Velcade.

My normally calm heart decided to skip a few beats. Have I been taking pills that counter the effect of one of the primary reasons I'm hopefully going to be cured?   Have I mangled the maintenance program that has been delivering cures? Is the data that I've seen now invalidated because I've basically been off Velcade FOR SIX MONTHS!!!???!!!

I called BJ and she was reassuring. Green tea reduces efficacy of Velcade, and I should stop taking the pills, but I shouldn't panic. BB said the same thing.   But with all due respect and love to them, they're not the ones who may have been not getting the benefit of the Velcade for six months.   So my level of alarm was reduced from panic to concern.

I then wanted to go to Amazon to see exactly how long I'd been taking this stuff. And here's where things THANKFULLY turned out okay. As I was going through my back orders, I clicked on one of them. And it's VERY subtly different. One (the one I've been taking) is 7-KETO. The new one I ordered is 7-KETO Lean.   The only difference in the two...is that the original does not include green tea.

THANK GOD.

Now I will probably stop taking ANY supplements until I am done with my treatment, because nobody knows what this crap will do to you, really, particularly if your body is dependent on delicate chemical reactions to kill certain cells while leaving others intact.    The only supplement I continue to take is UAMS-approved for neuropathy. It's a compound of B vitamins called Metanx that has been shown to reduce neuropathy in Alzheimer's patients. So I'm fine with that.

Other supplements be damned. Sorry Margaret and Don! :)     I'm all in with Western Medicine on this trip.   Not that I won't get some curcumin along the way as I like dishes prepared with it. :)

Learn from me, people. Be careful what you eat, and don't let vanity get in the way of your most effective battling against this disease.

And with that, I'm off to celebrate my birthday with Jill, drinking wine and not water...but staying away from anything with green tea in it. : )

The actual meeting with BB...

2011-05-23T11:43:00.000-07:00

So as happens on these visits, my last scheduled appointment was with BB. I got to the clinic, met first with a research nurse who made sure all my medication records were being kept accurately, reported my minimal side effects, etc. I snuck a peek at my labs, reviewing my MRI and bloodwork and bone marrow (all good). I then met with the terrific physician's assistant JA to go over all of this before being summoned to the 4th floor and my consult with BB.

While there, I met a lovely couple who were monitoring the husband's MGUS. They had not yet begun any kind of treatment and had a few questions which I was happy to answer -- and I referred them to this little page so if you Longhorns are reading, hello! : )

Then I went into BB's office. When I get access to the photo I took, I'll post it here, which will further strip away anonymity for anyone who cares to look so it's almost ridiculous at this point to keep initializing him since anybody who is remotely interested (and if you aren't, not sure why you are reading!) could find out that it's Bart Barlogie so there it is: like the day when KISS decided to take off their makeup, I've revealed the name of my doctor.

Anyhow, I'll post the photo here when I have a moment.

Now, you've read some descriptions about BB here, and for those of you that I know, you've probably listened to me tell many stories about him -- always being kind not to tell me that I'm boring you! But I can't imagine this man is only of interest to me! My usual description of him is: "a 70-year-old German guy who rides a Ducati to the office and does his rounds in black leather biker pants and a dog collar." Sadly, he was wearing a different outfit on this particular day! Nonetheless, he is quite a character as my previous stories attest and as this one continues to affirm!

I entered his office. He looked at me, smiled, and say "hey there, a**hole!!!" and stood up and gave me a big hug and kiss. I couldn't help but tear up and frankly I am doing so as I type this. Some doctors are known for being detached -- two well-known doctors in this field are known for being rather cold, actually. BB, on the other hand, is emotionally invested in his patients. He and I are friends. I have mentioned before that I can see he is visibly effected -- saddened and tangibly angry at the disease and his inability to cure the most severe cases -- any time he loses a patient. The flipside is real joy and a lightness of being when he is able to put somebody on the path to a cure. Hence: "hey there, a**hole!!!" and the accompanying affection.

After introducing me to a colleague on rotation in from Greece (both a physician and the uncredited photographer behind the photo I shall post) he jumped into the file. The highlights:

* Bone marrow negative for plasma cell myeloma, with normal morphology. That means the right number of chromosomes, all in a nice little row.

* No trace of original M protein under immunofixation or SPEP.

* ALL BUT FOUR of the fourteen lesions in my bones have fully resolved. I had, upon diagnosis, two in my hip, one in a rib, one in the left scapula / shoulder, and TEN in different vertebrae. As of January, only two (shoulder and rib) had fully resolved. But now, all but four of them are completely resolved and the remaining four (two in my thoracic vertebrae, two in my cervical vertebrae) are small enough where their size is not noted (which means they are less than half a centimeter). Bart pointed out that UAMS is the only Myeloma center that tracks resolution of former lesions because their data suggests that recurrence can be linked in part to remaining focal lesions, even if inactive for cancer. So this is tremendous and important progress. My Zometa infusions were reduced from monthly to bi-monthly. We will see if he continues it once the bones are fully healed (as it does look like I will get there) as Zometa's anti-Myeloma properties may or may not extend beyond promoting bone healing.

* My Dex was reduced from 12mg weekly to 8mg weekly. This is the lowest amount that the protocol allows. I welcome the reduction and hopefully it will reduce the digestive issues that I get mid-week.

* I am to return in four months, and we'll see how it looks at that time but thereafter it seems likely that visits will be reduced to every six months. Which makes those Whole Hog sandwiches even more of a rare treat!

So there, friends, is the full update.

More news as is merited.

A very good checkup! (part 1 of 2)

2011-05-23T11:03:00.000-07:00

Apologies for the delays in posting this, dear readers, but I've been frightfully busy with my day job.

Some highlights from the week prior to my meeting with BB:

* A lovely dinner with BJ at a restaurant I had not tried before, So. We discussed a few topics of interest:

   - UAMS has been prescribing more Revlimid than anybody in the world to hundreds if not thousands of patients for a longer period of time than anybody in the world and has seen no incidence of increased secondary cancer. BJ attributes Celgene's own statistics to small sample size. My own opinion is guarded -- I don't like the fact that Celgene noticed anything, although I do understand that sample size can make a bit difference and UAMS has much better data than anybody in the world, and ultimately the risk is worth the reward as Revlimid plays a major role in the cure that I am pursuing.

   - BJ notes that UAMS has been using maintenance therapy for 20 years, the first 18 of which were in the face of people saying it did no good, and that they view the recent broadening of acceptance of maintenance therapy with equal parts satisfaction and irritation.

   - There are people who remain alive nearly 20 years after Total Therapy 1 (unlike current therapies, this is a small percentage) who are reluctant to discontinue their medications which include Thalidomide and Interferon. In the case of Thalidomide, its benefit is long since exhausted since any residual disease would have developed resistance to the drug by now. In the case of Interferon, it was never proven to be efficarious! Yet patients are afraid to change the regimen, particularly if they tolerate the therapy without side effect. BJ noted one patient in particular who is on a MAJOR dose of Thalidomide (over 1g a day!) who was reluctant to dose reduce even though the protocol at UAMS has been a fifth of that amount for years now. I wonder if I, myself, will be reluctant to dose reduce / discontinue medication after the three year mark when the vast majority of the "cure signature" has been determined. Or after the six year mark when recurrence rates are effectively zero. Hmm....

   - I had previously succumbed to vanity and had a dermatologist in LA freeze off a single wart that had appeared on my right index finger. When this chap (no initials as I'm about to rip on him a bit) did that, he saw some as-yet-undeveloped naughty tissue around my fingernail so he froze that off as well. Except it came back so he froze it off again, and again, and told me to put this acidic cream on it, and trimmed the nail, etc. After all these treatments over a period of three months, the right side of the nail looks pretty unpleasant. The dermatologist out here thinks the nail matrix (the part of the body that produces the nail) has been scarred and will never work again and I'm going to have to have it surgically pared back and my fingernail will only be about 80% of the width that it should be -- forever). Mindful that the actor Roy Scheider had been successfully treated for Myeloma only to perish from complications that began with some kind of cellulitis, I asked BJ to look at the finger. She recommended I meet with a dermatologist at UAMS and would set up an appointment for me.

* I made the pilgrimage to Whole Hog BBQ for a delicious pulled pork sandwich. This is one of the things I miss about living in Little Rock. But frankly if I lived here full time I would probably be cured of Myeloma only to die of heart disease since these sandwiches are too good to resist! Behold the glory! (note: the "V" on the BBQ sauce denotes "Volcano" sauce which is so hot you have to get it from behind the counter rather than from the container of six different sauces on each table).

* I ran into J and B B (the other BB referenced a few posts ago) who looked great! Unfortunately, the next day they learned that their struggle continues...Pomalidomide (next generation Velcade) failed to deliver results and so now the Natural Killer cells are the next step, but the non-dr-BB has disease that has escaped the marrow and this must be eradicated before the NK cells can do their thing. I continue to be humbled by the strength and grace of people with this disease, particularly those with a more aggressive form than I.

* One advantage of having the MRI rejected by insurance is that I reduced it to only the essential stuff -- basically we are interested in tracking the resolution of my former "hot spots" so there's no need for MRIs of every other part of my body. As a result, I got in and out of that tube in about 40 minutes which beats the heck out of the 3+ hours (between the full body MRI and the separate bone marrow "DWIBS" scan) that it usually takes!

Okay, so to the important matter...well, actually my meeting with BB deserves its own post as this is getting rather long. : )

Dateline: Arkansas

2011-05-16T10:30:00.000-07:00

Hello folks. Sitting in a hospital bed waiting for my bone marrow team to show up. Figured this was as good a time as any for an update.

I was all set to fly out yesterday from LA but due to some last minute changes in travel, I forgot that I was no longer flying out of the same airport. Thus, I went to the wrong airport. I then had to scramble to find sn alternative but eventually made it into Little Rock around 11PM.

This morning, I had a minor victory when I went directly to the infusion center and had them access the port for the blood work. I ran into JB and her husband B, who has not yet started on the natural killer cells. Evidently the trial only permits one person per month and ine guy got in front of B. Meanwhile B was been put in Pomalidomide (next-gen Revlimid). They see BB tomorrow. Meanwhile we are going to hopefully have lunch tomorrow.

I then went over to the Myeloma institute where I saw BB's Ducati outside the main entrance. I almost snapped a picture. :)

After a quick consultation with CR and a quick visit with BJ (hopefully BB, his wife, BJ and I will have dinner this evening) I made my way over to the outpatient clinic.

Not much more to report yet, but I did want to mention one humorous (sort of) thing. One of the young nurses in the myeloma clinic who used to give me grief about getting conscious sedation for the bone marrow biopsy got into the elevator with me. I asked how the storms that have ravaged the south these last few weeks had impacted Arkansas (there are been tornados, for example).

She said everybody was okay but their barn was damaged and her husband's work was disrupted. He is, I was told, a taxidermist.

I have a vision now of a man running from a small funnel cloud populated with the swirling carcasses of dead squirrels and possums....

More news when I get my labs and MRI results back later this week.

A quick thought on caregivers...

2011-04-27T17:21:00.000-07:00

Without caregivers, it would be unthinkably challenging to those of us battling this disease.

Give your caregiver a hug today.

There you have it: my briefest and least clinical post, but it is as heartfelt as any I've made.

A bit more on killer cells at UAMS...

2011-04-20T16:52:00.001-07:00

For those interested, the trial in which BrB will be enrolled is described right here. If this works for high risk patients, it will likely work for all. Let's all keep our fingers crossed!

Another example of why I love my doctor

2011-04-20T11:31:00.000-07:00

A fellow traveller -- well, actually, we're going to call this guy a warrior...BB are his initials, and he's not related to my marvelous doctor -- has been through hell, and today was a neat example of why I love BB (both of them, really, but the doctor for purposes of this story).

This is gonna get confusing so we'll call the patient BrB and the doctor BB.

You have read a lot in my blog about low-risk versus high-risk disease. About 85% of patients, according to the 70- and 80-gene studies at UAMS that are by far the most advanced in the world for this disease, are classified as low-risk disease and they are eligible for the TT4 protocol for low-risk disease. This is what I underwent. I had some bad characteristics within this 85%, such as cytogeneic abnormalities and a "proliferation" subtype that meant my disease was more aggressive than some, but I was still low risk. And BB believe he is curing about 65% of newly-diagnosed low-risk disease patients through the TT4 protocol.

The results and prognosis for high-risk candidates are considerably more dire. The treatment protocol is more aggressive even than the already-aggressive TT4 protocol (I believe there are five or six additional chemo agents used, on top of the four used in TT4 -- and note this excludes "pseudo" chemo like thalidomide, Velcade, etc. - I'm talking real, old-school mustard gas chemo). And cure / survival rates are much lower. Only about 20%, if memory serves, are cured, and most people live only 3-4 years with high risk disease.

My wife and I met BrB and his lovely wife as we were in the middle of therapy. They are delightful, warm people and it pains us to know all that BrB has had to go through. On top of it being high-risk, he is also non-secretory, which means his disease does not show up in his blood (M-spike) or his urine (Bence Jones Protein). It is only through PET Scans and bone marrow biopsies that it is revealed.

BrB enjoyed one year of remission after this brutal regimen, and about six months ago it came back. I'll spare the details, but he's been through extremely aggressive chemo, has had to deal with horrible respiratory complications, hospital stays for that where he's contracted opportunistic infections, etc. Throughout this, his lovely wife J has been so supportive and tried to keep his spirits up. BrB, understandably, has had some real challenges but he manages to soldier on with dignity even if his spirit and body is exhausted.

Several days ago, BB demanded to know where some test results were. They hadn't been done. BB went ballistic and the tests were done. And then he saw that there was some residual myeloma. BrB was saddened, obviously, until -- and this is where it gets cool almost like a scene in a movie, BB called the lab.

"How close are we with the killer cells?"

"One week."

"I want BrB to be the first to receive them."

In addition to the existing Total Therapy regiments, BB and his colleagues have been working on killer cells for myeloma. This has been done successfully in leukemia in London, and it has been demonstrated to be highly effective in myeloma-stricken mice at UAMS.

BrB will be put on Pomalidomide (next-gen Revlimid) to keep the myeloma in check until May, when he can get enrolled as the second (there's one other guy, turns out) patient in this trial that has shown tremendous promise.

My thoughts and prayers go out to BrB and J, both for their own individual sakes and as hopefully an example of another important breakthrough driven by BB's steadfast desire to cure this disease.

Bruising like a grape

2011-04-11T17:58:00.000-07:00

Just a quick update about one of the side-effects of Revlimid. I banged my hip against my desk a couple of weeks ago and a GNARLY bruise resulted. I mean at its peak this thing was at least six inches in diameter and covered the whole right side of my hip. Yuck. I was going to take a picture of it and post it here but frankly, neither you nor I really want to see that immortalized for future search engines to find! :)

My platelets were around 110. I graphed this at one point for my own edification and should put it up here. On maintenance there is a short cycle where while one is on Revlimid for the 21 days, the platelets decrease, and during the week that one is off it, they creep back up. They might, for example, be at 150 at the start of the month, go down to 110 by the end of the 21 days, and go back up to 150 at the end of the 18 days.

Two further points, though. The first is that they lag a little bit so they seem to continue to go up during the first few days (say the first 7 of the 21) of the month and then continue to go down even when one is no longer taking the Revlimid for a few days.

The second, bigger point is that over time they don't go up by as much as they go down. I would say my baseline has probably dropped from 125 to maybe 110 over the last year. And that is slightly troubling since I'm on this stuff for another 18 months or so and I will be well below 100 on a regular basis, and that's when the gnarly bruising starts.

I asked BB if I could take a week off from the Revlimid to give the marrow a chance to recover and hopefully have that bruise vanish. He agreed, thankfully. So the bruise is starting to get better. But today is my last day off. Blech.

Be well, everyone! I am scheduled to return to Arkansas on the 16th of May but will have updates before then.

Sad news about Geraldine Ferraro...

2011-03-26T12:28:00.000-07:00

A sober reminder of how horrible this disease is. She was quite a fighter -- living with this for 12 years. She outlasted the odds available to her at that time. But it's also a sobering reminder of how one can only control this disease for so long.

Here's hoping that in celebrating her life and honoring her passing with dignity, some attention can be focused on this disease and new treatments developed, hopefully leading to a cure that's a bit less intensive than the one hopefully offered through tandem transplants.

For now, I remain humbled by my good fortune in finding a doctor and a protocol in whom and in which I believe, respectively. And I remain thankful for you good people, and for the favorable impact my therapy has had on me thus far.

Thought I'd let you know I'm not sick! :)

2011-03-15T11:59:00.000-07:00

Sorry to have been so busy!!!

I have some interesting things to post...I have on average two people a week email me as newly diagnosed patients. And one lovely young lady who is working on a college paper on the disease after her mother was diagnosed was kind enough to ask me some interesting questions, and our dialogue might be insightful to some so I will post that soon.

Generally, everything is good. I went through a couple of weeks where the dex was bothering me...it wasn't even that I had (TMI alert) constipation...it was as though the entire digestive system shut down. I felt like I had food in my stomach for three days. It was pretty awful. But those have abated the last couple of weeks...in fact this week I have felt positively peachy -- no GI issues at all. I am off Revlimid for the week, and I decided to give myself a break from the magnesium, so it's been very easy.

Of course all that ends shortly, as today is Velcade day and then I've got the Revlimid back on tonight and the accompanying Dex. However, everything is steady as she goes.

Including the weight, sadly. I dropped about 20 pounds but have been holding fairly steady. Further weight dropping, given how much I am working, is going to require probably total abstinence from wine for a month and even more heinous restrictions on food. I really only want to lose another 10-15 pounds...that would put me back at my high school fighting weight which would be pretty remarkable after all I've been through. We shall see.

Anyhow, sorry for the lack of updates...I shall endeavor to be more regular soon!

Reflecting on lost friends, those still here, and those I continue to meet...

2011-01-27T10:49:00.000-08:00

It's roughly two years to the day since I began treatment. I took my medicine this week, including Zometa (a pricey little thing at $3,400 per infusion!) to hopefully spur my bones into healing quicker and resolving those remaining inactive tumor sites. If they're all gone by the time of my next trip, with some luck I won't need to have a fine needle aspiration done on any of them!

And I deal with the side effects. All things being equal, of course I'd rather not be on this stuff. My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be. Between tiredness and the barrage of winter colds encouraged by my intentionally suppressed immune system, and of course my work schedule, it's hard to even think of when I might exercise but I really need to start physical therapy. Damn, I should have made that one of my new year's resolutions.

But I remain very fortunate. I'm thinking now of two groups of people...the first group is comprised, unfortunately, of a small but growing numbers of fellow Myeloma travelers I've met since my diagnosis. Some were quite sick at the time of my diagnosis, and some were not yet diagnosed. But several have given up the struggle and lost their battle with this horrible disease. These people are friends in a very real sense...and I feel the loss. Just today, I was looking through another blog and found that the woman that maintains it lost her husband literally yesterday after a single transplant a couple of years ago.

Then there's another group of friends who have chosen to control the disease, with minimal use of drugs and reserving stem cell transplant as a last resort, etc. For a time, these friends seemed to be faring well but one by one they are losing remission. I fear for them, not because they necessarily will have a dire end any time soon, but because it is a reminder of where the "control" path leads. To eventual recurrence and the hope that science outpaces the disease. And certainly there are more drugs now than ever before to help beat it down. I will of course be reliant upon the newest of these in the (unlikely) event my own disease returns.

Then there's yet another group...people that contact me through my blog. On average, I get perhaps two emails a week from newly diagnosed patients. It is one of the most rewarding things in my life when this happens...I feel like I am able to provide a little perspective, and some optimism. I started this blog, in part, because everything I read was so defeatist. I remember the book saying "your new birthday will be the date of your transplant, nothing will ever be the same, etc." Well I had two of them, and I can scarcely remember the month with confidence, much less the day. And while there is a "new normal" that has replaced the "old normal," I would say that most things are very much the same.

So this is rambling, but I guess I would say to my second two groups: don't be afraid to take the fight to the disease if it's acting up. Don't be afraid of a transplant if that's part of the protocol you and your doctor choose. Don't fret about the side effects: the side effect of untreated Myeloma is death. That's a bigger deal than hair loss! Or the other side effects -- which I humorously found mentioned on another blog as NVD (never thought of my initials being a mnemonic for nausea, vomiting and diarrhea). As I mentioned during my own transplant experience, they are very good at controlling the first two.

And while I strive not to be messianic in this blog, if you are newly diagnosed, PLEASE do yourself a favor and investigate aggressive therapy. People are being cured in large numbers. It bothers me so much when people refer to Myeloma is incurable. That's simply not true.

All that said, the aggressive path is not for everybody, but three things are:

* Find a Myeloma specialist. NOT just any old hematologist, not somebody who dabbles in it along with lymphoma and non-HL and leukemia. But somebody who REALLY knows this disease.

* Take control. Demand your labs. Ask questions. Learn everything you can about the disease. Be your own advocate.

* Bring a positive attitude. Once you have selected your treatment path, be confident in your choice. Put your trust in the hands of your doctor. Remember, any pill you take or infusion you receive that causes an unpleasant side effect is killing your cancer and upsetting it much more than the rest of you.

* Commit to getting better. Make this the most important thing in your life. If you have to move temporarily to be closer to a true center of excellence, do it. Your home will be there when you get back. If you worry about the expense, consider this is the fight of your life and if it's not worth burning through savings on this, what is it there for? If you worry about vanity like hair loss, get over it and get better. Nobody chooses this path: you are dealt a crummy hand. You can either play it to win, or fold. Play it to win.

Normal marrow and other thoughts, including BBs opinion on the Revlimid scare

2011-01-14T18:57:00.000-08:00

First off, everything looks good. Marrow has 50 percent cellularity, 5 plasma cells, 2 percent core plasma cells and is negative for Myeloma. Also, my hip doesn't hurt all that much so the new bone marrower must have done a good job!

I got to the clinic early today. I had a 12:45 appointment with BB and, keeping in mind that last time I got to the clinic early and got seen pretty quickly, attempted the same. I got there at 10:30 or so. Sure enough, I met with the research nurse pretty quickly. Hard to believe I am heading into my 17th month of maintenance already.

Then things slowed down. Waited in the clinic for about an hour, then got put in a room. I read my labs...the MRI, unfortunately, did not indicate any shrinking of the four remaining focal lesions. They were stable, but did not resolve. My blood work came back negative for M protein under SPEP, but there was not yet a result from Immunofixation which is the more sensitive measure.

I observed on the MRI various characterizations -- hypointensive marrow, hyperintensive marrow, isointensive marrow, homogenous marrow, heterogenous marrow, etc. I tried to discern any differences between the previous scan and this one but I lacked the knowledge to figure it out.

I sat and waited, and waited, and waited. I had a flight to catch and wanted to leave by 3PM and it was starting to look dicey. At around 1:45 the clinician, a terrific physician's assistant named JA, arrived. He called and got the bone marrow results, which was a relief. He explained that what we are looking for is homogenous marrow, as opposed to heterogeneous marrow, as the latter implies patchiness. So in this context these descriptors do not refer to the cellular content of the marrow but rather the evenness of its distribution through the body.

The other vector -- hypo- hyper- or iso-intensivity -- is a little more complicated. MRIs (at least the ones done here) use two types of images: T1-weighted and STIR. I have no idea what these distinctions mean, but JA explained that T1-weighted images focus on the liquid in one's body which makes the readings of marrow hyper intensive. So the ones to look at are the STIR images, and the best reading is evidently isointensive (which means the same all over).

For what it's worth, I am mildly hyperintensive. Sadly I learned what all this meant after I turned the file over to JA but next time I will see what I used to be and how it has changed. All of this is subjective and up to the tech that interprets the MRI, so one's mileage may vary. I was told by JA that BB would not react to any of that data, although he reminded me that "sometimes BB sees things in the data that the rest of us do not see."

It was now 2:15 and I reiterated that I had to get on a plane at some point soon...my original appointment time with BB was 12:45. JA said that BB was almost back on schedule and I should be able to get out of there by 3PM, which would be perfect.

Then I sat down with the man himself. He looked troubled (though not by me). He got on the phone with the hospital, got some people on the line and was quite upset. From what I gathered, one of the APN (uber nurses) in the Myeloma clinic had developed Waldenström's macroglobulinemia, which is itself a blood cancer. BB had done rounds yesterday and noticed that this person's white cells were at zero. He ordered a bone marrow and asked that stem cells be readied. When BB saw the results of the bone marrow he ordered the stem cell transplant immediately.

Apparently the doctor at the hospital who had to sign off on this cited protocol that the two things (bone marrow biopsy and stem cell transplant) cannot be done on the same day because it can create a chaotic environment in which patients can be at risk. BB's point of view is that this isn't done every day, and that if exceptions cannot be made when a person's life is at risk, there is something seriously wrong with the policy.

BB laid it on the line: if this young man dies because of this, he is gonna give it to everybody over there with both barrels and hold them responsible.

I mention this because BB becomes personally invested in the patients under his care. I have written about this before. Every patient lost to Myeloma is an affront to him. He confided that this has been a "horrible year" so far and that half a dozen high risk patients have been lost. "you follow these people and treat them for so long, and then to lose them...you know..." I could see how it affected him. He said that "it's as though there is nothing in common between the two branches" -- meaning he really does think that most low risk patients will be cured.

While waiting for him, I spoke at length with a gentleman who looked to be in his late 50s who was himself high risk but was still in remission three years after he began. High risk patients achieve remission easily but the recurrence rates are frightfully high for the first three years. After that, they flatten out and recurrence risk is very low -- in fact they are likely cured. The gentleman with whom is spoke is three years out. When he last saw BB, the doctor said "you are almost out of the woods...but not quite!" and winked at him. Hopefully this guy -- who looked great, it must be said -- is out of the woods now with this current visit.

That man and I spoke, as it happens, about BBs humanity. He has an edgy sense of humor and is an iconoclast and is the same guy who jokingly pulled a clump of hair out of my head and pointed out how fat I was last time I saw him. Yet his care for his patients is immense. The high risk gentleman told me of how he thought his major courses of chemo were finished during his primary therapy (like me, he is on maintenance) and he was saddened to learn at the time that there had been one more course. Evidently he had been misinformed, and BB was angry. He got on the phone with whomever was responsible and said "dammit these patients go through hell, you cannot pull the rug out from under them with this."

Back to the present. BB was happy with everything in my chart except for the presence of the focal lesions that we want to see resolve (I have four or five left...two in my spine, one in my right hip, and one in one of my shoulders, possibly one in my rib). These are no longer FDG-avid -- meaning there is no cancer -- but as long as they are there, there is a chance that they can form a microenvironment for recurrence of the cancer (such is BB's theory, at least). "Sometimes, these ghosts can linger...it could take years in some people before they go away. But we want them gone."

I suggested Zometa and he agreed, so i will get one course every month for the next four months. He said he was "considering doing a fine needle aspirate of the lesions" but that the last time that was done, they were negative for Myeloma so he was not yet ordering it, and i will not need a PET scan next time either. I cannot say I am happy about the prospect of the FNA but I will cross that bridge when I come to it.

He offered me the ability to come back in six months rather than four, but i want to see these gone, and I want to hang out with BB, frankly, which we were not able to do this time. He asked about my family and told me to email him directly next time so that we can arrange dinner.

Then he said "you know, I saw a newspaper article about my good friend RS, who used to work with us here and now operates out of Hackensack...and this pisses me off.". He showed me the article, which was about Dr. RS's enthusiastic support of Carfilzomib, the next generation protease inhibitor which works in many cases where Velcade no longer does. The offending line in the article (which were not RS's words) referred to Myeloma being a disease which is "uniformly fatal.". BB said "why do they say that?"

I said that it upset me every time I read something similar, whether in an article like that or a fundraising letter from the MMRF (long-term readers know that I hold this organization in immense esteem, its refusal to acknowledge UAMS' results notwithstanding). I said I felt it was a slap in the face to the work being done at UAMS and to patients who have undergone treatment and been cured. We mused that it was in part a desire to maintain urgency behind fund raising and new drug development, but BB said "when you are curing childhood leukemia, you can raise money by pointing out the tremendous advances being made.". That is true, although I do think maintaining urgency behind a disease that cannot be definitively cured in virtually 100 percent of patients is pretty important.

I then asked BB about the Revlimid scare. Unlike GD, when I asked this of BB he knew immediately what I was talking about and I didn't even need to finish the sentence. His response, verbatim to reflect both his personality and his passion: "that's total bullish*t. Absolute bullish*t. We have seen hundreds of patients for many years and it's never happened. Somebody is selling something or has another agenda."

So there you have it.

Our time up, BB stood up and embraced me for a good 20 seconds and kissed me on the cheek, telling me again to give my family his best.

I cannot wait to see him again. I love that man.

Notably, I am on a flight to Las Vegas and the makeup of the passengers looks like a church group. Not sure the point of a church group going to Vegas...

Two things to be nervous about...

2011-01-13T10:52:00.000-08:00

I am typing this from a stretcher about to be rolled in for the bone marrow.

You gotta love how good Arkansas is about getting patients their data. I looked at the PET scan results. Largest lesion remains in my right hip at 3.5 cm. I seem to recall that is unchanged from last time, which is disappointing. Plus the SUV for my L5 vertebrae went from 1.3 to 1.6. Hopefully this is just noise and neither figure is indicative of cancer but I like numbers to go down, not up.

Second nerves-inducing moment was overhearing the bone marrow nurses. I am to be the first attempt by one of them. Things like "if you do that, then you will just need to make another hole."

Let's not do that, okay?

And while you are at it, keep your voices down or have these conversations out of earshot!

Arkansas update, or BOOP BLEEP BZZZZ BLAM BLAM BLAM

2011-01-13T07:08:00.000-08:00

Those onomatopoeias there reflect but a few seconds worth of the aural cacaphony of an MRI.

I had about two hours worth of that plus a host of other loud noises yesterday afternoon. Only here, ground zero for aggressive testing, could they find a way to make an MRI more exhaustive (and exhausting). I may have written last time about the relatively new (I think) DWIBS scan which essentially a second full body MRI focusing specifically on bone marrow. So now, one has basically TWO full body MRIs to deal with.

I also had my tenth or eleventh PET scan yesterday. I found out that I can listen to my iPod during the roughly fifty minute scan. File that under "things I wish I had learned nine or ten scans ago."

I will get the results of these scans tomorrow when I meet with BB, whom I saw at dinner last night. He was having a dinner with his right arm, BJ, and the head of an imaging company. I am sure BB and his patients are some of the best customers. I believe there are six MRIs at UAMS, with zero downtime, running 12 plus hours a day, and 80 percent of the entire volume is for Myeloma. Amazing!

Yesterday began with port access and blood draw. I was unsuccessful in my efforts to get them to use the port for the blood. The clotting factor (important to confirm before a bone marrow biopsy can be done) is rendered inaccurate by the heparin used in the line after each access to ensure it doesn't clog. So they found a vein in the thick part of my right forearm, about three inches towards the hand, versus the inner fold of the arm at the elbow where people with healthy veins are usually tapped.

I asked the nurse about the likelihood of my veins returning to health. It does not sound promising, sadly. C'est la vie. Difficult-to-find veins scarred by chemotherapy are not going to kill me, and I have long since learned to accept that the "new normal" is a life replete with little inconveniences.

(a real-time note: the delightful doctor with whom I just checked in to make sure I could tolerate the anesthesia for the biopsy just asked if i was related to Dick van Dyke...but was astut enough to note that this was probably not the first time I had been asked).

Anyhow, while I was not successful in getting them to use the port for the blood draw, I was able to have them access it for the tracer used in the PET scan, and I will use it for the sedation today, so that saves a couple of IVs. I also refused the use of contrast for my MRI. They use it sometimes to make the brain easier to interpret and I have had it before. But there was never any myeloma involvement in my brain (thus, my questionable brain function must have another source) so I don't feel compelled to do this often, particularly since I am in remission (knock on wood that it hasn't been lost) and since I heard a rumor on another blog (albeit one that advocates curcumin rather than treatment) that the tracer is bad for you.

Which brings me to this morning. Checking into the hosipital for the first of two pre-op consults, in the waiting room I was treated to the thrill-a-minute joyride that is closed circuit television coverage of the swearing in of the eight recruits comprising the new additions to the Little Rock police force. I was just about to listen to the moving convocation delivered by either the city sub-comptroller or dogcatcher (it was difficult to discern) when I was called in.

I did see a more thorough blood analysis from yesterday's pull (more labs were finished) and the numbers look good, though still no M-protein numbers. But B2M was a mere 1.4, the lowest it has ever been. Protein is 5.9. The graph looked good as well. My liver numbers are essentially all in range (AST's range is essentially 15-50 and I am at 52) so the amount of water I am drinking must be helping combat the effects of Lipitor, chemo, and wine.

More news at it becomes available.

Nb it is FREEZING here. Literally. 23 degrees as I drove in this morning!

Some thoughts on this Revlimid situation...perhaps a false alarm?

2010-12-28T06:36:00.000-08:00

Hello folks, and happy holidays.

There's been a bit of chatter over the last couple of weeks about Revlimid and its potential linkage to secondary cancer. This began when some studies of Revlimid in Myeloma seemed to have higher numbers of people with secondary cancers in the Revlimid arms than the non-Revlimid arms.

I've not yet gone back to Arkansas to look at the specific data, but I have had a couple of conversations subsequent to my last post so I thought I would mention it.

First, I think there is a figure of 8% being bandied about and I think it's being done incorrectly. The Celgene (maker of Revlimid) spokeperson said that there is an 8% chance that a Myeloma patient -- in general -- would develop a secondary cancer within a given two year period. Now this, alone, seems extremely high to me. But that's a separate issue. The same spokeperson than said that the number of additional secondary cancer occurrences in the Revlimid group was within this 8% margin for error -- in other words, s/he attributed it to random chance rather than any statistically significant impact from Revlimid (or at least made the case that it could simply be random).

I'm not sure how I feel about all that -- a mixed bag, at best, but I don't think the idea that Revlimid increases secondary cancers by 8% is correct.

Probably more importantly, I had a couple of conversations about this with Dr. GD (my maintenance guy) and one of his excellent nurses (who I'll explain in a moment). I was talking with GD in general about recent trials and I brought up the Revlimid one. He said that he'd had many people on Revlimid for many years and had never seen a single case of secondary cancer. That, it seems to me, is very good news. Anecdotal rather than statistically significant, perhaps, but good news nonetheless.

I mentioned the tandem transplant statistics and GD, despite his mild reservations about some of BB's aggressive tactics, said he believes they do in fact make a difference, do cure some people, and represent a "stop gap" measure until such time as we have a more effective means of managing Myeloma. Sounds right to me. He mentioned that he had a couple of patients whom he urged to go to Arkansas for treatment, and they opted for less invasive treatment, and they are both very ill now...as in on their last legs. Again, anecdotal and everybody's case is different, but it is worth noting.

GD also brought up that with one of these patients, he spoke with BB about how BB would treat. BB mentioned VDT-PACE as induction (Velcade, Dex, Thalidomide, Cisplatin, Adriamycin, Cyclophosphomide and Etoposide...all of which I had). GD said that the key to administering that therapy is a great deal of experience with managing side effects and palliative care, and that he (GD) would not be comfortable administering it himself. Makes sense. I had the same feeling when I reluctantly went to Arkansas -- I'd rather be the 1000th person going through it there than the first person doing it in California under somebody else.

I went back to GD's the following week and had a nurse I'd not met administer my Velcade. The other nurses are pleasant enough and good at their jobs, but I feel like I know much more about Myeloma than they do. However this nurse was extremely knowledgable. I mentioned Arkansas and she brought up BB. We discussed Total Therapy, etc. I was surprised at how much she knew, when one of the other nurses came in and said "oh, you've met E...did you know her husband is Dr. RV?" (RV, whom I've not mentioned here some time, is a prominent Myeloma specialist out in LA). Anyhow, this led to a discussion of Revlimid. RV has had, per his wife, "prescribes a LOT of Revlimid" and has never had any issues with secondary cancers.

More good news!

Speaking of which, all my labs look good. I get a week off meds next week -- cannot wait -- in preparation for my trip to Arkansas the following week for MRI, PET, bone marrow, and all that good stuff. Can't say I am looking forward to the process but I am eager to see results, hopefully, in resolution of the four remaining formerly-active lesions in my bones. If they are all healed up, BB will hopefully breathe a little easier with me. That's the next hurdle in the road to being cured.

Happy New Year to you all!

Asymptotes and secondary cancer...

2010-12-12T07:34:00.000-08:00

It's been a pretty busy couple of weeks here. At my office I have three half-written posts that never got finished!

The first of these has to do with tying the previous post (about the efficacy of tandem transplants) more concretely to what Arkansas is doing. The study that demonstrated this was not a UAMS study. And it was done without the benefit of any new drugs -- BB uses tandem transplants plus the most potent induction protocol there is, plus Velcade and Revlimid. The efficacy of Total Therapy, therefore, is probably higher than the data would suggest.

But the real takeaway from that data is the notion of a plateau. UAMS' philosophy is predicated on the idea that if somebody has not lost remission by year X, they are cured. This was seen in a type of childhood leukemia as that disease was treated in a manner similar to Total Therapy, and that disease is now 95% curable.

People pooh-pooh the notion of a plateau in Myeloma, but I've never seen anybody explain why. This includes my maintenance doctor who seemingly doesn't understand the statistical notion of an asymptote (this explains why I never finished the other post...I wanted to bring some graphs into this and perhaps in a post to come I shall). At the highest level, an asymptote in this context means that instead of the chance of recurrence being equal or random over time, it grows smaller as remission is sustained and eventually disappears. In the study below (from memory) this was noted at 11 years. Which is about where UAMS noted it at the time of Total Therapy 1 (pre Velcade and Revlimid and Thalidomide). UAMS is now in Total Therapy 4 and 5 for newly diagnosed low- and high-risk patients, respectively, and the plateau for low-risk appears to be at three years post-complete remission. That means that if one makes it three years, one can go off meds and know that they are very likely cured (95% or more likelihood).

This brings me to the other issue in this post. Revlimid. Now key to any treatment of the disease, and an integral part of maintenance therapy for me and others treated at UAMS and elsewhere. Last week, Celgene (makers of Revlimid) took a pounding in the stock market when data suggested that their drug causes secondary cancers, such as Acute Myelogenous Leukemia.

This, needless to say, is jarring.

The exact statistics are a little vague at this point and no dosing information is available, and whatever secondary cancers show up are probably not as bad as contending with the mortality rate from untreated Myeloma. But I still don't like it. Particularly because (although there is no specific data that I could find) it is suggested that the occurrence of secondary cancer increases significantly when one has a stem cell transplant.

The best longitudinal (i.e. over time) data on the use of Revlimid, of course, comes from UAMS where BB has been using it for around seven years. That is actually three years longer than the study that was completed that indicated the secondary cancer.

So I emailed UAMS to ask them to share their own statistics with me. They will have tracked hundreds of people under their protocol and they'll know how many, if any, have contracted secondary cancer.

I've not heard back yet...which means I may go directly to BB himself.

I'll be there next month anyway, so I will find the answer.

In the meantime...I look a little more askance at each blue-and-white pill that I take in the evenings. It's a little disturbing...

Tandem transplants proven to create longer life expectancy!!!!

2010-11-24T17:14:00.000-08:00

In this study from the Myeloma Beacon, "long-term follow-up results indicate double transplantation is superior to single transplantation for Myeloma."

Some highlights:

* Significantly better 10-year overall and event free survival

* 12 percent of patients still in remission at a median follow-up time of 13.6 years

* Study shows that after 11 years, rates of recurrence were much less likely to relapse later

* Study included alkalyting agents (nasty chemo) but no novel agents (thalidomid, revlimid, velcade)

ALL of this supports BB, UAMS, and Total Therapy. BB refuses to put his patients into a blind trial because he thinks it would be unethical not to use the regimen he feels has the best chance of saving their life in order to prove a point. To my knowledge, this is the first published data of such a trial, and the first document outside of Arkansas that supports the tandem transplant concept.

That makes this extroardinarily important.

EVERYTHING BB was doing when I was diagnosed -- Relvimid in newly diagnosed patients, Velcade in newly diagnosed patients, maintenance therapy -- has subsequently been accepted by the establishment who at the time of my diagnosis said BB was crazy to do it. I've written here that tandem transplants would be the last domino to fall. But now, this data proves him to be right about that as well.

I don't normally directly proselytize beyond telling my own story, and to be clear there are some for whom Total Therapy is not the right choice, and there are about 20% of patients who don't respond to any treatment.

But I **URGE** anybody newly diagnosed with this disease to explore the aggressive option. It may just save your life. There is a lot of literature and blogosphere commentary about being conservative -- I am one loud voice to the contrary. Explore your options -- and before considering something like JB's protocol, ask him how many of his patients are still alive after 10 years of treatment. Better still, ask ANY doctor with whom you are talking.

BB will tell you...to the exact number...how many people are alive after any given number of years. Beware any doctor that won't share that information, or sees too few Myeloma patients to keep track of it.

Okay, that's enough. What GREAT news for all of us, though!!!!! :)

Full text of the article copied below.

Long-Term Follow-Up Results Indicate Double Transplantation Is Superior To Single Transplantation For Myeloma

4 CommentsBy Jessica Langholtz and Julie Shilane
Published: Nov 23, 2010 5:52 pm

Long-term follow-up results from a clinical trial show that multiple myeloma patients who underwent two stem cell transplants remained in remission longer and also survived longer than patients who underwent one transplant. These findings are updated results from a previously published study comparing single versus double transplantation.

Multiple myeloma patients are commonly treated with stem cell transplantation. Several studies have shown a survival benefit to having a second transplant a couple of months after the first. However long-term follow-up results are necessary to confirm this.

Patients were recruited for the study between 1992 and 1997, and the initial findings were published in 2001. The current report includes updated results of the trial after following the patients for a median of 13.6 years.

The clinical trial evaluated the outcome of 90 patients (46 newly diagnosed and 44 pre-treated) who were planning on undergoing double (also known as tandem) stem cell transplantation using their own stem cells.

Of the 90 patients, 49 patients actually underwent the second transplantation.

Stem cells for the first transplant were collected prior to a preparative conditioning regimen of high-dosemelphalan (Alkeran) and then transplanted back after the melphalan treatment.

Stem cells for a second transplant are often collected at the same time as the stem cells for the first transplant, but some myeloma cells remain in the bone marrow and can be collected along with the stem cells. In an attempt to increase the efficacy of the regimen, this study collected stem cells for the second transplant several months after the first transplant.

Patients who were eligible for the second transplant received conditioning therapy with a combination of busulfan and cyclophosphamide (Cytoxan) and then received transplanted cells that were collected after their first transplant.

At the time of the trial, novel agents, such as thalidomide (Thalomid), Revlimid (lenalidomide), and Velcade(bortezomib), had not yet been introduced for the treatment of myeloma.

In both the original and updated reports, patients undergoing tandem transplantation experienced a median overall survival of 84 months. However, long-term follow-up showed that overall survival of patients who underwent single transplantation decreased from 49 months in the initial analysis to 44 months in the updated report.

Initially, the data showed that patients receiving tandem transplants were likely to have better survival than patients receiving a single transplant. However, only in the follow-up results was the difference between the two groups significant, demonstrating the importance of long-term follow-up of clinical trial participants.

Patients who received tandem transplants also achieved significantly better 10-year overall and event-free survival than patients who received a single transplant (34 percent versus 18 percent for overall survival, and 18 percent versus 0 percent for event-free survival). This data was similar to previous studies comparing single and double transplants.

The researchers noted that at the time of the follow-up analysis, 12 percent of patients who underwent tandem transplantation were still in remission. They also noted a “plateau” in remission rates after 130 months (almost 11 years), meaning that patients who were still in remission at that time were much less likely to relapse later. They attributed this long-term remission to the high-intensity of the regimen, not the use of stem cells collected after the first transplant.

The researchers concluded that the new long-term follow-up data confirm the promising results published in the original report. Additionally, the long-term results show that tandem transplantation is superior to single transplantation.

In their evaluation of the updated follow-up data, the researchers cautioned that it is important to consider a possible selection bias in the trial. Patients with a good prognosis may have been more likely to undergo a second transplant. The primary reasons for not undergoing the second transplant were insufficient stem cell harvest (23 percent, likely due to harvesting after high-dose melphalan), toxicity of previous treatment (9 percent), and progressive disease (8 percent).

For more information, please read the follow-up report in the Journal of Clinical Oncology (pdf) or the initial results published in Bone Marrow Transplantation.

Thanksgiving and a Forgotten Anniversary

2010-11-24T13:19:00.000-08:00

Thursday, November 13, 2008. This was the date that I was diagnosed with Multiple Myeloma, and told that median life expectancy was five years.

It's a date that one might thing I would not let pass unnoticed. I knew that it was sometime in November, but I didn't recall the exact date. And I was going to make a blog post about it, but didn't get around to it -- been working too much lately.

At any rate, it came and went. I don't live my life as though I have Myeloma. I take pills at night, they have some side effects that I'll be glad to be rid of eventually. I get Velcade once a week -- I've grown to view these visits as respites from the frantic pace of my job. I go to Arkansas once every four months now, for a series of tests which generally bore me to tears, and at which I now fully expect to see no return of the cancer. And I wait, patiently but with growing confidence and conviction, that in two years time I will be off meds and will be told, definitively, by the doctor who sees more Myeloma than anybody in the world that it will not be coming back.

And so...I give Thanks tomorrow to the doctor who saved my life, my family and friends that make it worth saving, and everybody in the Myeloma community -- doctors, nurses, patients, caregivers and the precious followers of this blog who sustained me at my lowest and still inspire me with their own stories and their care for mine.

Warm wishes to all of you for this holiday.

Best,

Nick

Crampwatch 2010 continues...

2010-11-18T06:25:00.000-08:00

Haven't had one of these in a long time. Night before last I had a pretty sharp on that wasn't nearly as strong as others because it barely woke me from sleep...I couldn't determine if it was in the bottom of my foot or my right calf. It lasted maybe 15 seconds and I was able to return to sleep. My calf was sore when I woke later but it went away pretty quickly.

I missed two nights of magnesium -- last Friday and Saturday. They are the only nights I have missed since upping my dose to 1000mg per day. And this is also the first cramp I have experienced since that time. It could be coincidence, or could be a delayed effect...I will hopefully not experience another so I cannot guarantee I'll have enough data to figure out the correlation with precision!!

Was awoken last night from heartburn, despite taking Pantoprazole before bed the last two nights. This seems to be getting a bit worse over time, or at least bouncing around. Dex is the culprit. Sigh.

Where has the time gone?!?!? Highlights from the last month...

2010-11-16T12:33:00.000-08:00

Hello folks. Honestly I'm not sure what's happened to the time but I'm alive and well!

Some observations from the last month:

* All markers still look good as can be. Platelets are a little low, howevering around 110, and didn't recover when I took the week off Revlimid but sometimes that lags a bit so we'll see how they look today. Platelet suppression is the biggest hematologist issue in my maintenance. I will -- I promise -- be putting a graph up showing platelets over time. Anyhow, in contrast, WBC has been a little higher, around 4-5 which is in the low end of normal but definitely normal. I would say this could be in response to fighting something off, except my CRP is very low indeed. Curious, but I ain't gonna knock it.

* In related news, I have gone a long stretch now without bronchitis or any cold / cough. This is remarkable and much appreciated! My little boy has had a nasty cough for about a month and somehow I've not contracted it. Could it be my immune system is righting itself, even through the haze of immunosuppressant medication that I'm on? I looked back to check the other Ig figures -- IgG remains where it should be and has been which is to say mildly suppressed in the 550-650 range. IgA was obliterated during primary therapy and now sits at very low normal around 100, but while I first thought this might have been a slow recovery that now gave me the stuff to fight off colds, it has really been bouncing around in the 90-100 range for the past year. IgM, likewise, was obliterated during therapy and remains quite low (below the point at which they begin measuring, which is 26) although it has peeked up into the range of measurement from time to time. So it's not these markers. I don't get T-cell or CD cell information other than in Arkansas, so perhaps I'll see what that looks like when I return there.

* I had a terrific brunch with a fellow MM traveler, EW, in Los Angeles a couple of weeks ago. He's been kind enough to comment here from time to time and has followed the blog for a while. He's an excellent guy and has a very interesting story, involving two doctors mentioned here from time. One of them, of whom I am not a fan (Dr. JB), is on the opposite end of the spectrum from Dr. BB. He thinks transplants are a waste of time. He pursues what I will call a trial and error approach to different combinations of drugs. Personally, I think his approach is dead wrong, but he is a doctor and I'm not, and as I have remarked to a friend that is less of a fan of transplants than I, if Dr. JB finds a cure, I will be in the front row cheering him on. Anyhow, upon his initial consult, Dr. JB looks at EW and says "ehhhh....I give you three to five years." What a jerk!!! Thankfully, EW went for a slightly stronger approach, even though he has not undertaken a transplant. And it's more than three to five years later, I believe, and EW feels great and has the disease under control. So...take that, Dr. JB!

* I was saddened to read in the MMRF's latest blurb that "Myeloma is incurable." With respect to Kathy, this is factually incorrect, a slap in the face to the work being done at Arkansas and elsewhere, insulting to those of us who have undergone aggressive treatment, and dangerously mis-informative to newly diagnosed patients. It would be accurate to say there is no definitive cure, or to suggest that there is no treatment that can cure everybody, or even that there are controversial treatments which might represent a cure for some patients but not all. However it is simply factually incorrect to state it the way they have. I understand their need to maintain urgency in what is a fundraising newsletter, essentially, but it is depressing nonetheless!

* Lastly, I am pleased to note that by sticking to drinking as much water as possible, I have now lost 1 stone 6!

The small magnesium pills...

2010-10-19T04:21:00.000-07:00

...no longer are any easier to tolerate than the larger ones. It's hard to get a decent night's sleep these days. And yet, I suspect it's been at least two months since I had one of those horrible cramps so this is a small price to pay.

I have noticed, meanwhile (knock on wood) that it's been a while since I've had bronchitis. My IgG remains suppressed, per the plan. IgM is very slow to recover, seemingly, from the transplants. It's been below 26, which is the low end of the test, for a year. Whether it is 2 or 25, I'm not sure. As for IgA, this has steadily gone up from transplants and is now in the low-normal range. I will be graphing this shortly, along with a few other key graphs, as further information for those post-transplant.

Feeling good, other than tired. All else goes according to plan.

No more CYA from Arkansas...

2010-10-15T11:34:00.000-07:00

I needed to get a copy of my bloodwork today to get my prescription for Lipitor renewed. Don't know if this is ironic in the proper sense of that word, but it does obviously remind me that my desire to avoid blood testing for any purposes, and my primary care doctor's insistence that I get it done before renewing Lipitor, is what led to my diagnosis two years ago right around this time.

At any rate, I got my information from Arkansas. I've looked at at least ten different immunofixation reports from Arkansas since I achieved complete remission. Each one first says there is no monoclonal protein under serum photoelectrophoresis, which is the less sensitive test. They read "M protein cannot be detected in this specimen at the level of sensitivity of [this test]." That's been that way for a while now.

Then we get to immunofixation, which is the more sensitive test -- in fact, the most sensitive one per BB, since he thinks immunofluorescence is wildly prone to error (in both false positive and false negatives).

Normally, the Arkansas text reads something like "The original M protein cannot be detected but may or may not be present. Faint monoclonal bands are observed. Indistinct IgG kappa bands are present." I have consistently been told that the indistinct kappa bands are a sign of recovering marrow and deep remission, and that the reference to the "may or may not" is mostly a CYA type of thing.

This most recent report, however is more definitive:

"The original IgG lamba M-Protein does not appear present. Indistinct IgG kappa bands present."

Things will continue to bounce around, but that is the most definitive statement I've seen that there's nothing there! Good news...enough to take my mind off the minor tingling in my feet.

Where has the time gone??? Also, 4 is better than 2 + 2.

2010-10-12T03:35:00.000-07:00

Sorry to have vanished here, folks. Work flared up and I also found myself traveling to London for about a week, which was delightful other than the fact that I found myself working my normal 12 hour day on London time, followed by demanding calls from my boss in California that had me at it another 6 hours or so. It was a pretty rough stretch but I did manage to see some friends, have some nice meals, and walk around one of my favorite cities. The weather was great -- about 65 degrees (fahrenheit) and mostly sunny.

Anyhow, I'm back now, and will try to contribute with a bit more regularity!

I did want to point out that I made the switch -- inadvertently, due to running out of the large 500mg pills -- to 250mg pills of magnesium. I take four of these, rather than two of the big ones. They're the size of a plain ol' vitamin C pill versus the horse pills that are the 500mg versions.

The results on the GI tract appear to be a bit less extreme than the 500mg versions, so that's a good discovery and something to keep in mind.

In mojo news, I endured a particularly painful shot of testosterone in the gluteus maximus that stung like a mofo (not to be confused with mojo) for about ten days. I had the residual ache from the bone marrow on the left side, and the sting from the shot (a first, after five months of no-big-dealness) on the right. I felt like I needed one of those inflatable butt cushions to sit on. The bigger issue was sleeping -- couldn't lie down on either side or roll over at all without it hurting.

Fortunately, it went away. But today I have to go see the urologist again for another shot. Even worse, I have to consult with him since its been six months. "Consult with urologist" is a polite way of saying something probative (in the biological sense) is probably going to happen. Gulp.

I also have purchased, but not yet taken, this Maca root stuff. I'll ask the doctor about that today and hope to dissuade him from other aspects of the exam.

Two questions asked of Dr. GD in light of the weekend...

2010-09-22T09:53:00.000-07:00

First of all, feeling much better, thank you all!

Second, some of you folks will remember -- and some of my friends in the UK may get a kick out of this -- that at some point over the last two years my now three year old pressed a series of buttons on my electronic scale so that it now outputs in stone. Being an Anglophile in the first place, and having a particular sense of humor, this strikes me as hilarious and now even if I could switch it back, I might not. I've long since lost the manual for that thing and I could probably search the Internet, but why bother?

At any rate, I'm down one stone one, as I believe it's said, from my peak, most of which is from (a) the weekend, and (b) manical followup. I have been sticking to 1,200 calories a day, drinking a TON of water (the one thing that every physician in the world probably agrees upon) and laying off alcohol -- and watching the pounds continue to ease off.

I'm not going to stay at 1,200 calories a day for much longer, and I'm certainly not going to abstain from wine for much longer either, but I'm going to continue with the water. I would like to drop maybe five more pounds before I stabilize for the moment. That will leave me about 10 pounds over my goal weight, but Rome wasn't built in a day and with luck I'll get the stomach flu again at some point in the next two years! :)

I told my wife I would GLADLY trade one of those chest colds for stomach flu any day of the week. At least there's a side benefit to the latter!

Anyhow, enough about my slightly contracting waistline and on to the medical topics.

I met with Dr. GD yesterday, who said I looked great, sighed again at the potency and longevity of BB's maintenance regime and then relented and agreed to continue administering it (obviously, as soon as he no longer does so I'm gone -- hope he realizes that). I did ask him two questions yesterday that might be of passing interest:

Question: Since I am taking a lot of Magnesium on a daily basis (1000 mg) am I in danger of becoming dependent upon Magnesium supplmenets? Will my body stop manufacturing Magnesium on its own?

Answer: I don't know -- it depends on your kidney functionality. He checked my serum Magnesium (I told him it was 2.0 when last checked two weeks ago -- and I was right) and he then said "you'll probably be fine."

Assessment: My kidneys have held up like champs through this whole thing, although at the beginning the Myeloma was starting to mess with them. Creatinine was, I think, as high as 1.6 or 1.8 when I started treatment but since the first round of chemo it has never been above 1.1 and was below 1.0 most of the time until maintenance. Increasing my water intake in my diet should help further with this. Ultimately, I'm not terribly worried -- as long as the body doesn't get used to needing external Magnesium it'll be all right.

Question: Since I am in seemingly constant low-level intestinal distress from the Magnesium, am I going to become dependent upon Immodium?

Answer: No.

Assessment: Phew!

Lose weight now, ask me how!

2010-09-21T09:19:00.000-07:00

Not Herbalife, folks.

I got a pretty nasty bug on Saturday. Turned into a fever by Saturday afternoon. Kept creeping up and eventually got close to 102, which is not good for anybody, much less for somebody in my delicate (i.e. immunosuppressed) state. Thankfully I had no other symptoms -- no coughing, congestion, sinus issues, etc. -- oh, well, other than crippling diarrhea 10X an hour. I took a couple of Tylenol to try to keep the fever down and called Arkansas.

They said not to be overly concerned, watch the fever, take TamiFlu twice daily and Levaquin (very powerful oral antibiotic) once daily. My insurance doesn't like to cover TamiFlu, unfortunately, so that's a pricey pill but I'll fight insurance later -- right now I just wanted to feel better!

The fever abated but the GI issues persist. At some point during all this, it dawned on me that the magnesium I take (which is ESSENTIAL in preventing those god-awful leg cramps) is the primary ingredient in the rocket fuel laxative that Arkansas prescribed at the beginning of my chemo. Magnesium Citrate. It's probably magnesium with a little lemon juice thrown in! And I'm taking that, DAILY, in high dose (1000 mg) -- without even the benefit of lemon juice to cut it!

Add stomach flu to that and you can imagine what it's been like here.

But I've lost 10 pounds and my face almost looks like it did before I started on dex.

Sign me up for the stomach flu diet!

I'm feeling somewhat better today, drinking lots of water, and hoping I can keep the weight off and maybe even use this to kickstart further weight loss!

Progress and still doing well, per Arkansas

2010-09-12T08:48:00.000-07:00

This last week I had the usual battery of tests. The MRI was particularly long this time as they now do something called DWIBS -- I looked it up but can't remember what it stands for but it essentially measures the heterogeneity / homogeneity of bone marrow.

Long story short, I remain in complete remission. Blood work was good. MRI showed that one of the five original active lesions -- the one in my left shoulder which was the first pain I felt associated with this disease -- has completely resolved. The other four are shrinking, albeit slowly.

My bone marrow came back with 7% plasma cells, and about 3% plasma in the core marrow. This crept up a bit and made me nervous but it was negative for Myeloma and neither BB nor Dr. U, his new assistant guy, were concerned.

BB was impatient for more progress in the bone healing, but he noted in his dictation that bone healing lags complete remission in the blood and that the median time from complete remission to resolution of lesions is 18 months, per their research. I am a year into CR, so hopefully within six months my bones will be fully healed.

He was sufficiently impatient that he looked into whether or not he could increase my Revlimid dosage while keeping me on protocol. But protocol is a maximum of 15mg 21 days a month, which is what I am on. Now I know he would take me off protocol immediately if he needed to do so in order to improve my outcome, and the fact that he did not do so made me feel a little better -- although I will admit to some nervousness between the plasma cell increase (I was below 5% before) and this other fact.

I will return in four months, now, not every three months. And hopefully we will see more improvement in the bones at that time. He thought another course of Zometa would not be a good idea, for what it's worth.

Lastly, I did ask folks about Maca root and nobody had heard of it. Still not sure what to do there...

Enjoy the rest of your weekends!

Calling all homeopaths...or, Peruvian mojo powder?

2010-09-05T16:36:00.000-07:00

A friend of mine was talking about something called Maca powder. It's evidently a root similar to a radish grown in the Andes. And apparently it is very potent stuff. Many benefits but chief among them promotion of libido. And there are legitimate scientific studies in both lab animals and humans that prove this out.

Of course all the hippie dippie websites that promote herbal remedies likewise promote this particular thing. However I'm willing to consider this one provided it (a) works and (b) doesn't conflict with any of the cancer therapies I am on. I'm prepared to accept item (a) above as a given (or in any rate, I would find out quickly) but item (b) remains an issue. I will ask BB and crew about that next week but in the off chance anybody here knew anything, I thought I'd mention it.

Other questions for BB and his crew next week: what's with this residual bone pain, how does the MRI look, how are long-term revlimid studies looking (BB is testing whether or not continuing with Revlimid in lower dosage after the three years of initial maintenance are over is beneficial), and what is the latest thinking on re-immunization.

Anybody else think of anything I should ask? :)

Hope you are enjoying your weekends!

Crampwatch 2010...

2010-09-03T07:08:00.000-07:00

Haven't had Velcade or Revlimid this week.

Split a delicious bottle of Cabernet last night (a 2006 Vineyard 29, for those playing the home game) with the wife. Dozed off watching TV and dragged myself to bed upstairs when I woke up. Didn't think about taking the magnesium...

Big mistake. Six AM wake up call from a cramp in my left calf.

Looks like I will need to take that stuff for a few weeks, at least, until all the Rev is out of my system. And even then, I'll probably be afraid to go to sleep! I'll be like the kids in Nightmare On Elm Street...

Ongoing GI issues...

2010-09-02T05:54:00.000-07:00

I am happy to be off meds for a couple of weeks right now. Velcade interferes with the bone marrow biopsy process so I halt Velcade a week before my visits to Little Rock. Revlimid requires aspirin to combat the potential side effect of deep-vein thrombosis, and aspirin thins the blood, and they don't want thin blood before any surgical procedure, bone marrow biopsies included. And dex, I suppose, is a rounding error in this mess. So I'm off VRD for two weeks -- the week before the tests and the week of the tests. A time for my white cells and platelets to recover -- and maybe even a chance for some of my IgG to recover, which is odd considering I was so consumed with suppressing it and eliminating all the bad protein there.

In fact, it's been some time since I've been concerned about Myeloma, per se. I really don't expect to see it again. Of course I am waiting for the formerly active lesions in my bones to heal, and next weeks' MRI -- as dull as that process is -- will be interesting to see. I do not think they will have knitted but some progress should be seen, I hope!

I must confess I am getting extremely tired of the constant diarrhea. Most recently I thought this was an impact of the Velcade and that I'd experience some relief when off it, but no such luck. I looked to see what I'm still taking -- aaah, Magnesium. The reliever of those awful leg cramps. Turns out causes diarrhea.

So to recap:

Velcade - causes diarrhea AND constipation

Revlimid - causes diarrhea AND constipation, particularly in combination with Dex

Dexamethasone - causes diarrhea

Magnesium - causes diarrhea big-time

Acyclovir - causes diarrhea

Lipitor - causes diarrhea

So, really, WTF?!?!? COULD I POSSIBLY BE EATING ANY MORE TO WRECK MY GI TRACT? AM I REALLY SURPRISED THAT I AM HAVING PROBLEMS?!?!?!?! :)

Not sure what to do about all this, but I'll ask BB and team next week. I'm not getting rid of the Magnesium -- those leg cramps are the worst. So maybe I'll just add Immodium to the mix and hope for the best. But I'm a little concerned that things may never be the same. Particularly since, according to studies on long-term Rev-Dex use, the worst may be yet to come:

Update from recent studies: Increased diarrhea in patients taking Revlimid-dex for an extended period of time (>8 months)

In studies with more than 700 patients, patients taking Revlimid-dex for more than 8 months experienced significantly more diarrhea than patients taking dex alone (39% vs 28% with dex alone).
In the majority of patients, diarrhea started after taking Revlimid-dex for 19 months.

Not sure what to do about all this, but I'll ask BB and team next week. I'm not getting rid of the Magnesium -- those leg cramps are the worst! In the grand scheme of things, I suppose, if somebody had told me "we'll get rid of the Myeloma, but you'll have diarrhea the rest of your life" I'd still have signed up to get rid of the Myeloma. This is a high class problem, albeit a low-class post! :)

Quick statistical clarification...

2010-08-29T13:06:00.000-07:00

A reader was kind enough to email me with a couple of questions about my last post and I realize it is not as clear as it might be.

There are 167 patients who are low-risk with at least six years of data. Of this 167, 18 lost remission -- the remaining 149 remain in remission at six years. The last to lose remission happened about 3.2 years after reaching remission. So put another way, everybody still in remission at that point is in remission about three years later -- despite being on no meds.

BB once told me that in a particular data set we were looking at, the group losing remission includes people that can no longer be considered as being in remission for any reason -- like failing to look both ways before they cross the street! I do not know if that holds true for this particular data set, but if it does, then the real rate of remission loss is lower than the figure above would imply (still less than 10 percent).

The price of aggressive treatment...

2010-08-29T10:32:00.000-07:00

Just heard that somebody who went the aggressive route was in complete remission before his second transplant...and then contracted an opportunistic infection with his weakened immune system that led to bacterial pneumonia. He is no longer with us.

Then again, I know people diagnosed after me who went with the "control the disease" approach that are no longer with us, either.

This is not yet a chronic condition like hypertension. This is cancer, and it will kill you if you aren't careful. There are no easy answers.

Treatment related mortality overall for the aggressive approach I took is around 1 percent, but that includes many elderly patients. For somebody my age, it is probably more like 1 in 1000. Those odds are good...unless you are that one. And when you encounter that one, it can be jarring.

I am on a day trip to Cincinatti for work (one night, two days, I suppose). I was cleaning out my carry-on satchel and found some papers that BB printed out for me back in May. At that time, he had six years of post-treatment data for Total Therapy 3. Of 149 low-risk patients in that protocol, not a single person who was in remission at 3.2 years had lost remission in the following 3 years. That is not an accident; it is not coincidence: it is cure.

But there is no choice without some risk.

Quick update...and one mans' myalgia is another man's OUCH!

2010-08-18T05:26:00.000-07:00

Hi folks. Sorry to have vanished there for a bit. Lack of news plus a brief break for an annual golf vacation took me away from my post for a bit!

I continue to be contacted by newly diagnosed patients who stumble across this blog and I have to say it is one of the most rewarding things -- if you are reading this and are diagnosed and want to talk about anything, please drop me a line!

So...recent labs are all good. That's what we call "answer first" in my business. :) Now I can back up and say that I've noticed, when lying down on it, my lower right rib feels tender. There is no constant pain -- it goes away unless I am applying pressure to it by lying down on that side. I had Dr. GD take a look (which consisted of him pressing on my lower rib) and it didn't hurt. He was fine with it. Then again, he'd be fine if I had M-protein again. He doesn't fully get it. I resolved myself that I'd be getting MRI's in a few weeks anyway, as I return to Arkansas on September 7th.

Then the other day I noticed a pain in my right shoulder -- barely there...just kind of background noise during a round of golf. It went away later that day and has not returned.

Jill is keeping a brave face, suggesting that this bone pain is part of the healing process and comparing it to when our kids had "growing pains." A quick review of "growing pains" itself (thank you wikipedia) indicates that they are a misnomer and have nothing to do with bone growth (or any other kind of growth). So...there goes that theory.

Lastly, after a series of very good labs, I had a borderline high LDH (an enzyme test that indicates tissue breakdown and is a tertiary marker for cancer, treatment impact, etc.). I'm not overly concerned in isolation as it wasn't incredibly high (normal is 100-250 and it was 258...but two weeks before it was 140). Anyhow, these things were all combining to make me a little nervous.

For my part, as I said, I'll be getting an MRI soon enough for the bones. But the all-important immunofixation test, which I got back yesterday, is negative. Complete remission remains. Light chains totally normal as well. The likelihood of there being no M-protein and there being a problem is pretty low, and I'll be getting a bone marrow as well (great) in a couple of weeks as well.

I'm sure I'm still in complete remission and these random little things are just random little things. But I will be glad when the MRI reveals the lesions have all healed. I don't think I am there yet. BB says 1-2 years for resolution on MRI; I am at remission plus about 50 weeks so I've probably got six months to go.

I am half-afraid to mention any of this because knowing BB he will want fine needle aspirations of my rib and shoulder. If anybody in Arkansas is reading this, NO YOU MAY NOT DO THAT. :)

Speaking of pain, I had my first leg cramp in several weeks tonight. Left calf, pretty nasty. It struck at 4:30AM and I was afraid to lie back down for fear that it would happen again, so up I am. I saw a note in my file yesterday (yes, I had to ask twice to see it since GD's office never calls to tell me anything and I wanted to see the immunofixation results) that I had "no complains other than mild myalgia." Turns out myalgia is muscle pain, for those not in the medical profession. And if what I just experienced is mild, then a cerebral hemorrhage is a mild headache...

Lastly, gastrointestinal issues remain. I think the combined assault of VRD has left my GI tract in a state of disrray. I don't want to take anything over the counter for fear of crippling constipation. It's like a shower where the only two settings are too cold and too hot...one is afraid to make any adjustment. Anyhow, soon I will get a two week break from the meds and that will hopefully ease some of this.

That's all the news that is fit to print, and probably a few sentences more. :)

Be well, everybody.

Through a glass, darkly

2010-07-21T15:52:00.000-07:00

Okay, time to move the post about my GI issues down a bit! :)

As I went online to make my dutiful (doody-full?) post about some recent side-effects, I checked out the updates on a couple of Myeloma blogs I follow. One belongs to my friend Pat Killingsworth, who has taken a much more cautionary approach in his treatment than have I. I encourage people to read Pat's blog as it is a good counterpart to the more aggressive therapeutic route I have chosen and it gives people an idea of the range of options out there. Although I will ruefully admit that I stumbled upon Pat's blog when I was in the middle of treatment getting a blood transfusion and on that day, he happened to list the 10 reasons why you should never get a blood transfusion (I'm using some artistic license here) and I used this as a springboard to rant a bit about treatment philosophy at that time! :)

Anyhow, Pat is tirelessly dedicated to getting the word out there about all things Myeloma and while I have a markedly different point of view in terms of how aggressive to be, I have a tremendous respect and appreciation for Pat's energy and tireless dedication to get as much information out there as possible. With this in mind, I read with excitement his recent post that references an article talking about the effectiveness of maintenance therapy.

The article, which can be found on Pat's blog here, is titled "Post Stem Cell Transplant Maintenance Therapy Delays Multiple Myeloma Relapse in a Majority of Patients." A subtitle is that Revlimid in maintenance cuts relapse rates in half.

Pat and I draw somewhat different conclusions from this, but I view it as part of a puzzle being validated bit by bit. And we're getting to the reason for my Corinthian post title. The puzzle is completed for the majority of newly diagnosed patients but only a few people are looking at it in its totality. Other researchers are looking at bits and pieces of the puzzle without seeing the synergy the pieces have together. They are looking through darkened glass, unable to have the clarity of everything working together.

My diagnosing hematologist, SH, in November 2008 had the following things to say:
- "I don't believe in maintenance therapy"
- "We don't use Revlimid, that's saved for relapsed patients"
- "We [including MAYO and City of Hope] save Velcade for way down the line"
- "I do suggest stem cell transplants so you can be off drugs, but they do not prolong life"

Thankfully he also said I should look at the full spectrum of options including BB (whose last name, incidentally, he mistakenly contorted into an Italian version of its actual Germanic root) and I am immensely thankful that he was open-minded enough to tell me there were different points of view which is the SINGLE most valuable thing a newly diagnosed patient needs to know, and which is part of the bond that ties Pat's blog and mine together despite their very different approaches to treatment.

At any rate, let's look first at the different treatment philosophies accompanying these statements.

1. Maintenance therapy:

SH position in November 2008: "I don't believe in maintenance therapy."

BB position in November 2008 (and much earlier): Maintenance therapy is essential post transplant. Without it the Myeloma is all but certain to return; with it there is a high likelihood of cure in the 85% of newly diagnosed patients that are low-risk.

Current research: prolonged remission arises from maintenance therapy. Excluding Arkansas, the data set does not exist to prove or disprove any connection to event-free survival. Yet.

2. Revlimid

SH position, November 2008: "I don't use Revlimid in new patients, I save it for relapse."

BB position, November 2008: Revlimid is a part of treatment for newly diagnosed patients because of its superior anti-Myeloma effects and better tolerability than Thalidomide, which was the standard Immuno-Modulatory drug in Myeloma therapy prior to Revlimid. However, Revlimid is NOT used prior to transplant both because (1) it suppresses platelet recovery which would make the time to recovery from transplants much longer, and (2) it represents yet another type of therapy to which the Myeloma will not have been previous exposed (and to which drug resistance will have been developed) and therefore enhances the effectiveness of treatment if used after Thalidomide.

Current research: most mainline therapy now uses Revlimid in newly-diagnosed patients...a position that was so novel at the time of my diagnosis that Dr. SF at City of Hope used me as a test case to open a debate amongst his peers about whether or not to use Revlimid in newly-diagnosed cases. What current research seems to be missing, though, is this platelet issue -- to which my own labs attest. Part of it is, though, that extended Thalidomide can be pretty nasty. For this reason, and because of drug resistance, BB does at most two cycles of induction for low-risk patients plus some treatment during transplants and some consolidation -- compare that with induction elsewhere which is usually a year or longer!!

3. Velcade

SH position, November 2008: "We save Velcade for way down the line."

BB position, November 2008: "Velcade is a game changer and increases the cure rate of newly diagnosed patients (including high-risk) from about 40% to over 60%. It is a critical part of all phases of therapy for the newly diagnosed patient."

Current research: under investigation, but whereas it was almost unheard of for people to use Velcade as frontline therapy, now there are a multitude of trials doing just that.

4. Stem Cell Transplants

SH position, November 2008: "They don't prolong life."

BB position, November 2008: "They cure the majority of cases."

Current research: the jury is out. No data outside Arkansas exists to show the impact; Arkansas' data shows it pretty clearly but others either don't believe the data or have other issues with it. I believe this will be the last piece of the puzzle that others eventually prove out -- but it may not happen before something else better comes along.

You can see where I am going with this: researchers outside UAMS are seeing pieces of the puzzle, but not seeing the whole thing. Maintenance, in isolation without the therapy that precedes it, is shown to prolong remission. Great. But that's missing the fact the maintenance, as part of Total Therapy, is curative in the majority of cases. Revlimid, in isolation without the therapy that surrounds it, is more effective than Thalidomide -- but they, too, are only seeing part of the situation. Velcade, same deal.

All of these, though, are being proven out by research.

As I said above, my guess is tandem transplants will be the last thing to be proven out -- and hopefully by the time BB will have been put out of business by a new novel drug.

That is one thing that Pat and I both fervently hope for -- and I think BB won't mind the day when that happens either!

Sorry for the long post -- hope you got something of value from it. If not, low-brow poop jokes are just a few mouse clicks away.

GI Chess -- not for the high-brow

2010-07-21T07:28:00.000-07:00

If you know what this picture is from, then you can guess what this post is going to be about.

I have remarked before that this is not a dignified disease.

I have also remarked that if this blog is of value, it is in large part because of unflinching honesty. One of the most fearful things about undergoing Myeloma treatment is the unknown. So whether it's the uncomfortable reality of diagnoses, the uncomfortable reality of treatment, the uncomfortable reality of side-effects, etc. I hope that by faithfully reporting what happens to me, others who are undergoing treatment or considering it can at least know what they can expect might happen.

Which brings me to this post. I type this knowing I'm going to have another post shortly therafter so at least this won't be at the top of my page for long!

By the way, folks, thank you very much for the active comments re: supplements on the last post. If I asked my doctor here about them, he would say "ask Arkansas" so I will probably call BJ this week. I have discontinued Milk Thistle. I still take this liver.52 product which does seem to have brought down AST so it is having a positive effect but I will cover it off with BJ as this seems the prudent thing to do. I don't want any side effects!

Now...speaking of side-effects...

My GI tract has been in a state of war kind of like the Korean peninsula. I modulate Senna to keep an uneasy truce between the white pieces (constipation) and the black pieces (you can guess). Most matches are played to a draw.

On the white side, we have Revlimid (both individually and particularly when combined with Dex). On the black side we have Velcade, Magnesium supplements, the impact of Augmentin (strong antibiotic I am currently taking to get rid of chest cold #7 since maintenance therapy began), and potentially the chest cold itself. Actually I think Velcade plays both sides at times.

For the last five days now, the black pieces are beating the living daylights out of the white pieces. There is one white king desperately shifting around while about six queens are zipping about him.

Two oft-quoted pieces of research about diarrhea: (1) it is hereditary (it runs in the genes) and (2) while some people think it's funny, it's really....well. Anyhow, a third observation is that after five days it's starting to get very old. I am not yet taking Immodium because I took Dex last night and figured the natural advantage that gives to the White side of the board will kick in and if there's one thing I've learned in this process, it's about the dangers of over-steering. In fact this five day binge kicked in because I overdid Senna last week. But if things don't get settled down in the next 48 hours, I'll be on Immodium rapidly.

Meanwhile I'm drinking plenty of water.

I have another important post to make that I had hoped would bump this one down a couple of notches. But sadly I have to run to a breakfast meeting -- so this one will be here for a bit, in all its glory.

I'm not going to embed the video, but for those that saw the photo above and are pining for some toilet humor, the scene you are looking for is here:

http://www.youtube.com/watch?v=wbDiujuv6rQ

Milk thistle -- hold the thistles please!

2010-07-15T11:55:00.000-07:00

First, the second half of my return from Orlando story. To make a long story short, I am learning that spicy food of certain types do not sit well on Thursdays given Velcade. I had some Mexican in the Orlando airport and spent the first hour of the flight uncomfortable, the second hour very uncomfortable, and the next 15 minutes throwing up in the toilet at the back of the plane. After which I felt considerably better.

Things are going well. I am noticing that constipation requires earlier action. My cadence was one senna pill on Wednesday evenings and maybe on on Thursday mornings. I have found now that Tuesday night, Wednesday morning and Wednesday night are required. May take one more tonight. I'm not sure if it gets worse as I take more Revlimid during a given cycle but I have five more pills to go on this one.

Otherwise things are good!

Now here is a chance for you lurking homeopaths (those that I haven't scared away by my complete embrace of deadly chemicals) to chime in. I didn't lose and regain my tastebuds two separate times to never enjoy wine again. In fact I enjoy it quite a bit. Plus my liver is lightly taxed by my lipitor. There are four liver markers -- two are always fine, one is usually fine, and the fourth is consistently a little high. I have been taking liver.52 which I get from Amazon and that brought the third marker well into the normal range, but the fourth marker -- ALT which is the short-term enzymatic response to lipitor and alcohol, is still around 100 when it should be more like 70. These are not catastrophic numbers and BB as well as my local oncologist GD say everything is fine (BB's one comment in dictation to my file last year was that "patient probably needs to drink more"). But just for kicks I bought some Milk Thistle which I've been told is good at helping out the ol' liver.

Well I took this for about three weeks and I noticed what I thought was bone pain in the lower right ribs -- which scared me at first because that's where one of my lesions was. But it's actually a more dull pain and it's the liver! So needless to say, I'm stopping the Milk Thistle. I will look and see what's going on with the blood chemistry. If it brought down the ALT I may continue with it on a smaller dose (I had been using the "management" dose of 8 capsules a day versus the "maintenance" dose of half that).

Not the most exciting news, but it had been a while since my last post, so...

Notes from Orlando and MD Anderson

2010-07-02T10:11:00.000-07:00

I just returned from a week in Orlando for my company's annual strategic offsite with our board of directors.

A couple of things of note.

First being, Velcade waits for no man so I made arrangements with the help of PinnacleCare to be seen by a Dr. JH at MD Anderson in Orlando, who had agreed to administer my Velcade.

MDA there is quite nice, reminded me a bit of City of Hope in some ways. After a fairly lengthy signing in process (complete with a cool scanner that reads your palmprint!) I then checked in with a nurse, who took my story. She didn't know anything about Total Therapy and was rather amazed at the long list of medicines I checked off. She left, and a few minutes later Dr. JH entered.

Dr. JH *did* know about Total Therapy and he looked at me as though he was seeing one of the people from that soccer team that lived in the Andes off the flesh of their fallen comrades -- like you've heard the stories but can't believe they are standing before you. He asked me if I had ever met BB; I told him he was personally invested in my care and that I knew him quite well. He described my current regime as "the Mother of all Maintenance Programs" which seemed to confirm the strength of this package -- I later researched a bit on JH and found out he is engaged in a not-so-interesting-trial about Revlimid and one other drug as a means of treating recurrent Myeloma. Hello....2003 called, they want the concept back!

Anyhow, the staff was very nice, I was put in a nice semi-private infusion room that reminded me of a much nicer version of the transplant floor in Arkansas, all wood paneling, nice TV, nice chairs that were clearn with germicidal gel, etc.

They had the freezing spray, which made insertion of the needle in the port a snap. They drew blood, I sat back and did some work. The only real downside was how long it took -- it took forever for their lab to process the blood, then get approval of the Velcade, then mix the Velcade, etc. I was in the place from 7:30AM to 1:30PM. Between that and the cab time back and forth, it was a good 7 hours.

Nonetheless, Velcade administered, and I get on with my life. I took my dex that night and on Wednesday had one of the more productive days I've ever had -- problem solving left and right on this deal I am working through, full of energy, all the "positive" attributes of dex and I am once again indebted to the reader who suggested this be taken before bedtime rather than in the morning.

Anyhow, Wednesday evening rolls around and I take my symphony of pills before bedtime. Among them, Ambien. Critical to making sure I sleep well, and I had a good eight hours that I could sleep since my work was done and people were starting to head back to the west coast already at the conclusion of the meetings.

I then proceed to stare at the ceiling all night. There's no worse feeling than knowing you have to sleep and being unable to sleep. I had not brought my Pantoprazole (superstrength antacid, needed to combat some of Dex's less good side effects) on this trip, hoping I could just tough it out (bad idea, more to follow). So I had terrible heartburn and hiccups, which I thought might be contributing to my lack of ability to sleep. But I was awake...at 2AM thinking about work...at 3AM thinking about work...at 4AM thinking about work...at 5AM as my colleague slipping some work materials I had him working on under my door...at 6AM...and then I was so bloody tired at around 7:30 I thought I might be drifting off.

That's when the downside of staying "on property" (as well call it) became apparent. The kids in the room next door started shrieking at the top of their lungs. Note to the parents: I'm very excited that your three and four years olds want to go to Epcot center, but letting them just scream "EPCOT! EPCOT! EPCOT" unabated for two freakin' minutes is uncalled for. Then the silent (momentarily) parents must have stopped one of them because that one just started screaming bloody murder while the other one kept screaming "EPCOT!". And when I say "bloody murder" I mean it -- that kid was top-of-lungs screaming like you can't imagine. After 20 straight seconds I thought "my God, no kid can keep that up, they're gonna tire from lack of oxygen." No such luck. The superhuman kid just kept bellowing away.

I sat there, marveling at how wonderful my kids are and wondering if I should pound on the wall, but lacking the strength or energy to even make up my mind, much less get out of bed and do it.

At this point, previously-silent mother screamed "I NEED SOME TIME TO MYSELF!!!!" and the door slammed. Followed by previously-silent father saying "now look what happened" to his screaming kids.

I got up to take a shower...and then...I noticed...on the counter...like a lost little lamb that had slipped from my grasp before being swallowed last night....

the Ambien.

Magnesium dosage worked well

2010-06-24T13:47:00.000-07:00

Carl the Greenskeeper once extolled the virtues of Manganese (along with Cinch bugs) in maintaining the grass at Bushwood CC. I'm not sure what Manganese does, but Magnesium certainly helped with the leg cramps.

I was as scared to go to sleep as one of those teens in the Nightmare on Elm Street movies. On the advice of the good folks at UAMS, I should go to 800mg a day of Magnesium, but also check Magnsium levels. I had been taking 400mg before and that seemed to be working; I was getting 500mg of Magnesium from the over-the-counter supplement ZMA, that also has zinc and amino acids in it.

Anyhow, Jill was kind enough to pick up an array of tablets -- 500mg and 250mg. I took one of each before bed and prepared for the worst.

Nothing. I slept very soundly.

One never knows when these are going to strike but I will keep close tabs on them for others out there. So things of note: the last one happened the day after I stopped Revlimid. I also did not take Aspirin on the night without Revlimid. I also did not take MetaNX that night either.

Last night I took MetaNX and 750mg of Magnesium. We will see how this works for the next month.

Oh the irony, or, OUCH!!!!!!!!!!!

2010-06-23T07:20:00.000-07:00

So as I was up in the middle of the night, posting my blog update below, I also visited the blog of a fellow Myeloma traveler from New Zealand. After years of enduring this worst this disease has to offer with far more grace than I'd be able to, this person was (finally!) able to be placed on a Revlimid trial and is responding. I was so happy for him, and I posted a comment on his blow to that effect, and also let him know that should he experience leg cramps, they can be controlled with over-the-counter magnesium supplements.

I haven't had a leg cramp in weeks.

That is, until about an hour after I went back to bed.

During the dozen or so horribly painful leg cramps that I've had on maintenance, I've often thought, as the pain subsided, "thank God it didn't hit both legs at once...I don't know what I would do." Well, gentle readers, I now know what I would do.

At 5:45 I was woken from a dream with a rapidly developing cramp in my left leg (deep in the center of my left calf). I started to rub it and stretch but it was to no avail. The pain was excruciating. And as soon as I recognized it, my right calf got one, too. It felt like someone was sticking their thumb and forefinger of each hand into each calf, digging in about two inches, and tearing the muscles in two. In both legs.

I fell out of bed screaming, basically, rolling on the floor for about 30 seconds, and then whimpering rather than screaming for another minute or so. I woke up my poor wife from a deep sleep and she was a bit spooked given that I was screaming at the top of my lungs! Fortunately the kids slept through it.

I'm going to track these things more carefully. I had been using magnesium pills that had been prescribed to me over a year ago when I was in the hospital. I ran out of those (by design) about four days ago and have gone back to the over-the-counter supplements. I am gathering that the direct magnesium works better!

Ow....

So Sid, if you are reading this, take note. :) I have heard quinine also works well, but that suppressed platelets, so it's not advisable, unfortunately, unless you've got a much healthier platelet count than mine.

low platelets...

2010-06-23T03:55:00.000-07:00

Had my infusion yesterday at GD's office. I got my test results back from the previous week and they looked pretty damn good. The chemistry was pretty much all in the normal range with the exception of slightly elevated AST and ALT from the liver, owing to a combination of therapy, lipitor and the grape. Probably mostly the grape. :)

I am taking a supplement called Liver.52 (available from Amazon and elsewhere) which has brought the AST down to near normal. The other liver markers (GGTP, alk phosphate and LDH) are all normal. LDH is tracked in active myeloma treatment so to see this squarely in the normal range (reference range is 100-250 and I am 140) is great.

Other markers are also good. Beta 2 Microglobulin, a key marker used in the staging of Myeloma, is around 1.3. Normal is less than 2.5, although i was around 2.3 at diagnosis. At any rate, it is low and that's a welcome sign.

I remain immunofixation negative which is of course the thing I am really focused on. Light chains are all normal. IGA is moving back into the normal range after being suppressed by therapy, and that is a sign of "recovering marrow" per BB so that is all good as well.

Platelets, though, were a different story today. The nurse drew my blood, and gave me the aforementioned labs to review (a victory, since these folks are usually terrible about doing so). When they had analyzed the counts from the blood draw, she came in and said that the doctor was not approving Velcade since my platelets were at 80. I explained that I had taken my last Revlimid for the cycle and that the platelets should be bouncing back, and to please let the doctor know this. Meanwhile I called BB's right arm BJ who confirmed they would not hold Velcade and that the Revlimid is responsible for platelet suppression. I let the nurse know this and asked her to give me the Zometa infusion for which I was due while she presented my case to GD.

She came back in and said GD had approved the Velcade, which I got. As I was leaving the office, I bummed into GD and he noted he "almost did not approve it". Frankly, had he not, I would have insisted he speak with BB but if that failed as well, I would be taking my business elsewhere. This stuff is $5,000 an infusion -- they are getting paid well to execute BB's instructions and since it is my health that is being impacted, they better do so.

My instinct at the time of choosing somebody for maintenance therapy was that i wanted somebody who believed in the protocol that was being followed. My instincts were totally correct and this is a good example of where it might run into trouble. For a doctor who doesn't believe my therapy is curative, they are likely to be much more cavalier about the Velcade. For one who believes it IS curative, they recognize how critical it is to follow the protocol. I am sure had i stuck with SH, there would have been no Velcade yesterday.

As evidence by the time of this post, the dex is at it again. I am going to get a couple of hours of sleep now before work rears its ugly head. :)

Alive, well (minus another chest cold), busy and apologetic!

2010-06-21T10:08:00.000-07:00

Just wanted to drop by with no particular news other than to point out that I'm still here! I have been buried in work, attempting to sell one of our assets while also preparing for our annual strategic planning offsite with our board. Both of these things should come to a head soon and I can hopefully resume my project here whcih is the long-delayed posting of my detailed labs. I do think this will be of interest to people now that (thankfully) the day-to-day of my care is mostly pretty boring.

I have managed to get sick yet again. The provenance of the cold appears to be my adorable two-year-old. It spend twelve hours as a sore throat, a day as a sinus infection and now is residing in my chest just like the many predecessors over the past six months. I'm not sure what can be done other than to hit it as early as possible with Tamiflu and Augmentin (anti-viral and anti-biotic, respectively) and hope that takes care of it quickly.

I have tried to get back into exercise, mostly just light jogging / walking. I regret not taking steps to keep in better shape throughout treatment -- my broken back probably had something to do with that, actually. But some of it is also just the massive tiredness that sets in with chemo. My suggestion to those going down this path is to do everything you can to keep your energy and metabolism up. With the chest cold, I'm going to have to curtail it again, unfortunately, but hopefully that will pass soon.

I'm very sorry to have been so long between posts, and I thank all of you again for following me!

All clear from BB

2010-05-29T09:59:00.000-07:00

I am sitting in the Little Rock airport right now, after a successful visit. I have a lot to report, both medically and in terms of local color -- it may have to be in a couple of parts if I get interrupted by the departure of my flight!

Bloodwork showed no monoclonal protein under immunifixation. WBC was at 3.8, RBC at 4.5, Hemiglobin at 14.1, platelets at 117. All on the low side of norms but normal nonetheless, with the exception of platelets which are just a bit below normal. BB was quite pleased with all of this, particularly the platelets which he said were holding up impressively. Seem low to me, but he's the man, so...

Marrow was even better. No monoclonal protein, negative for plasma cell myeloma, and plasma cells at less than 2 percent. Additionally, there are oligoclonal indistinct bands which are, to use BB's words, "indicative of profound remission status."

The MRI was mostly stable, although it did show a slight decrease in size of several lesions. We need these to continue to heal, although that can take years. We discussed another course of Zometa, which I will get soon. Probably after I get my teeth cleaned as dental work and Zometa do not get along and I am loooooong overdue for a teeth cleaning.

The PET scan was good as well. Reduced SUV (the measure of cancer activity) from 2.0 to 1.3. I am just learning how to interpret this -- evidently baseline is 1.0, and anything higher than 2.5 is very likely cancer activity. For now, 1.3 is less than 2.0 and I am pretty sure I was at 3.7 when I got my first scan although I don't know for sure. At any rate, the decline is a very positive thing. The PET does continue to show over 100 osteolytic lesions. BB mentioned that these will always be there. I am not totally certain as to why -- I need to listen to our conversation again and will report if there is more to be said on the subject.

We then reviewed, as is his style, the newest available data from total therapy 3 and 4. Some salient observations:

1. The response curves are totally superimposable: meaning the data through the first three years or so of Total Therapy four are effectively the exact same as the first three years of the now eight odd years of data from Total Therapy 3. That means I have visibility about five years down the road.

2. There is effectively no difference in response between the lite and standard arms of therapy. Lite here is anything but lite: it is still MVDTPACE to start, VDTPACE for induction, two transplants with bridging (thal/dex), consolidation with dose-reduced VDT-PACE and then VRD in maintenance. But there is one less cycle of each induction and consolidation, and the transplants themselves split the high dose melphalan over four days to increase tolerance and reduce toxicity.

3. The recurrence curve for low-risk disease appears to be perfectly flat after year three. This is extremely important as it comes earlier than was expected. To the doubters, consider this: of 167 low-risk patients that achieved complete remission, only 9 percent fell out of remission during the first 40 months after achieving complete remission. What other protocol for a newly-diagnosed, low risk patient can promise that they have an over 90 percent chance of remaining in remission for three years once they achieve it (recall only 60 percent achieve complete remission; others may nonetheless have long remissions with a residual MGUS type disease)? Even more striking: not a SINGLE one of the 149 patients in remission at 3.5 years has lost remission almost three years later: one hundred percent of these remained in remission after six years. Not a single incidence of recurrence. Cure? Or mere coincidence?

Of those patients with my Proliferation Subtype (as defined by gene analysis) not a single one has lost remission, period. It is harder to achieve remission with this sub type, which is usually associated with high risk disease. There are only 14 data points of low-risk disease with the PR subtype so it is not as statistically robust but it still works for me!

Eveeything at this point is in the direction of cure, provided I keep up with maintenance. I have not felt any neuropathy since Velcade was interrupted 10 days ago. Nonetheless, BB and I feel that it is important to remain on the higher dose for as long as I can to ensure the most favorable outcome.

I asked BB about the validity of PCR tests to quantify residual disease. He said these were worthless. He said that in random studies they have seen PCR indications of molecular remission in patients who have multiple FDG-active lesions under PET Scan. So there goes that.

I also asked him about cutting off maintenance after three years versus the longer revlimid maintenance that has been discussed by some doctors, such as RV, or perhaps even BD based on his comments on the maintenance therapy findings yesterday in the pre-ASCO (American Society of Clinical Oncologists) conference next week. BB is currently doing a randomized trial of revlimid at 5mg daily versus no revlimid to see the impact. BB told me before that he does not randomize unless he thinks he knows the answer is "there is no difference." This is one of the reasons he doesn't submit Total Therapy to double blind testing. I told him he has two more years to develop data before we have to decide what to do!

Speaking of ASCO, Bart will be presenting some new materials on the ongoing fight against high-risk myeloma, where recent data suggests improvements and the presence of a cure signature, which though significantly lower in likelihood than cure with low-risk disease, is still meaningful!

More to come later, including some good local color and humor!

All dressed up and nowhere to go...

2010-05-28T06:20:00.000-07:00

So the answer to the question of "can you do a kyphoplasty on vertebrae that have already been through a vertebroplasty?" is "no".

Would have been good to know before we got up this morning to be at the hospital nice and early!

Oh well...I'll never get that lost height back but it's not the end of the world. We meet with BB this afternoon and I will have a full report at that time.

Hello from Arkansas

2010-05-27T07:59:00.000-07:00

Or should I say "howdy."

We got here Tuesday night and ate a great pizza at Damgoode Pies. One of the things I miss around here.

Yesterday was a verrrrry long day. Went to the hospital at 5AM to have my port accessed. I didn't want half a dozen blood draws, IV inserts, etc. After that it was a 6AM PET scan, 8:30AM visit with the research nurse here, 9:30AM x-rays, 10AM EKG, 11AM check-in at the MRI and after two hours in a tube with long banging noises, a celebratory late lunch at Whole Hog BBQ. Then I worked until around midnight.

Today, we do bone marrow. A bit less hectic than yesterday.

I have seen a couple of very young people here on this trip, including a girl yesterday who looked like she cannot have been older than 25.

I also met, on the flight from Dallas to Little Rock, a woman who completed Total Therapy 1 in 1996. Almost fourteen years later, she has no trace of the disease. And she did not have the benefit of thalidomide, revlimid or velcade. Basically she had old chemotherapy (probably VAD) and two transplants. And no maintenance therapy other than perhaps dex. Remarkable proof that people are being cured.

My appointment with BB is on Friday -- will report what I learn!

Neuropathy and other notes

2010-05-21T09:58:00.000-07:00

I noticed yesterday that for much of the day, I had a barely perceptible tingle in my feet. I first noticed it around noon and it persisted until I went to bed. Today, I feel it less, but it is still there.

I wouldn't say it's enough to get me overwrought, but I am starting to get a tiny bit concerned. I doubt it is from the Revlimid, since I didn't develop neuropathy while on Thalidomide and that's much more likely to cause it. The more likely culprit, then, is the Velcade.

I am told Velcade-related neuropathy can go away if the Velcade is discontinued. I am obviously not going to do that, but I might see if they want to dose reduce back to 1mg/m2 from my 1.3. The higher dose is because of my unfavorable sub-type of the disease, though...so even dose-reducing that could deter me from my progress which I don't want to do.

I visit Little Rock next week for PET, MRI, bone marrow and potentially kyphoplasty on my back. It should be an interesting few days, as always! I wasn't originally going to submit to the PET but I confess that I'm interested in getting as much information as possible given that the stray monoclonal light chain wandered into the immunofixation analysis the other day.

Among the questions I want to ask BB about:
- neuropathy
- reimmunization thoughts
- use of polymerase chain reaction test to determine molecular remission

Obviously I'm also keen to see if I have reached "MRI complete remission" yet.

Lastly, I was invited by ASCO (the American Society of Clinical Oncologists) to attend their upcoming conference in June. I would ***LOVE*** to do this, but my schedule will not permit it. However I do hope to do the next one.

Some random observations

2010-05-17T21:24:00.000-07:00

Hello folks.

First of all, I got another chest-cold. My darling little son had a runny nose on Mother's Day as I was playing with him at the park, and it was just a matter of time. I started feeling sick on Tuesday night, and I started taking Tamiflu and Augmentin and I had hopes that it was going to be gone as I felt good yesterday, but today it's gotten worse. So I will continue to monitor it.

Second, I switched my Velcade to Monday this week because of some potential emergency work travel tomorrow. With one less day to recover from the last infusion, I'm not surprised my counts were on the suppressed side but they were a bit worse than I thought. WBC at 2.9, platelets at 108. HGB was at 14, which is pretty good for me.

Third, I got the Velcade in the morning. Velcade has some side effects which I've mostly been able to avoid, but they include flu-like symptoms, headache, and fever. Normally, I take dex which suppresses all these symptoms. Regular readers may recall one of my primary care doctors, who is an infectious disease specialist, surmised that this was why steroids were taken at the same time as Velcade. Well, here's the problem. Normally I get Velcade in the afternoon, take the Dex about eight hours later, and then sleep. Today, I got Velcade at 8AM, and haven't taken Dex. 12 hours later I feel horrible -- fever, headache, flu-like symptoms. So the moral of the story is: make sure, when taking Velcade, to go to sleep less than 8 hours later.

Quick update with good news from my labs last week

2010-05-12T09:21:00.000-07:00

Most importantly, serum immunofixation is back to: "No monoclonal proteins detected." Complete remission. Phew! I am prepared to chalk up the previous reading to residual noise that is being eliminated through VRD for another 28 months or so.

After a week off Revlimid, I guess I expected my counts to recover more than they did. Whites remain at 4.2, which isn't horrible but is a bit on the low side. HGB is 13. Again, not horrible, but a bit on the low side. Platelets are 108. These are pretty darn low, but previous experience indicates that they usually recover with a bit of lag -- that is, after the first week back on Revlimid they usually go up.

When the deal I am running right now subsides (it should do so this week, although I've been thinking / hoping / praying that would be the case every day for two weeks now) I will hopefully have time to blog more regularly and put some data up. I would think that those in maintenance (or induction, depending on protocol) using VRD would be interested to see these counts over time.

I go back to Arkansas in two weeks for the Full Monty of tests: PET, MRI, bone marrow, bloodwork. I may even submit to a gene array (more marrow pulled out) but I might wait until their own data there shows that I no longer have any monoclonal protein. Right now, they have the hedged version of that: monoclonal protein might exists but we can't find it. This is still complete remission, but I want stringest complete remission / molecular remission, dammit! And once that happens, I did promise BB and BJ that they could do another gene array on me. So...I guess that will be a good problem to have!

I am quite tired these days...some of it is probably the ungodly hours (literally 18 hours a day, 7 days a week for the past month) and some of it is the drugs. I also notice that my muscles deteriorate. I haven't had time to run; when I did, I was winded pretty quickly but I will try to pick that back up. But in the morning in bed, if I try to even do a good stretch, my calves instantly cramp up. It's quite unpleasant and a bit disconcerting.

That said, I am managing stress VERY differently than I used to. I used to run around in a panic and I would have this desparate, pit-of-the-stomach dread that would rise up with some regularity when I was under the gun. Now, I nip that in the bud. When the workplace is unreasonable, I refuse to let it drive me crazy. As a result, there have only been two days in the past month where I've really felt stressed out. It used to be more like three days a week like that. So my post-cancer self is managing this a bit better -- which is critical as I'm pretty sure that stress is what gave me the cancer in the first place.

And otherwise, I feel good!

I might also add that the testosterone shot that I got in the ol' gluteus maximus hurt like a sonofabiscuit for about three days. The other shots were painless -- this one felt like deep bone pain, almost (although I know it was muscles and not bone).

Hope you are all well!

White counts, side effect roundup, bad dreams, etc.

2010-05-05T14:07:00.000-07:00

Howdy folks.

So the white count mystery from last week is just that: a mystery. Yesterday they were back down at three-and-change (I'm going to demand my labs through my always-excellent advocate, PinnacleCare) so in the "new normal" range (i.e. suppressed from the Revlimid but not to dangerous levels). I am off the Revlimid this week so it should be able to recovery slightly before being suppressed again for another three weeks.

No explanation of why it spiked up to 14. Could have been response to exposure to a potential bug, could have been something else. Since it had detail behind it and was heavy on granulocytes I am reasonably certain it was my blood that was reported upon rather than a lab error.

In an effort to reduce the number of pills in my medicine cabinet, I swapped out (momentarily) the ZMA supplement for pure magnesium pills that I was prescribed during my hospital stay in Arkansas last year. I have been taking 500mg of magnesium a day (versus the 600 that comes from the ZMA). Got a cramp in the small of my foot last night which was pretty painful but generally they are not a problem any longer. When I've depleted this bottle of magnesium pills, I will go back on the ZMA.

As far as other side effects, I've not felt the tingling in the legs since I blogged about it a couple of weeks ago, so I don't think I'm at serious risk for neuropathy. I made sure to get the brand name MetaNX rather than the generic in an effort to have B vitamins that are more easily absorbed. Hopefully that will carry the day.

I did have a curious side effect -- another bad dream, fairly vivid. These aren't nightmares, per se, in terms of physical danger or monsters or phantasmagorical material. Rather, they are emotionally dreadful situations (e.g. horrible fights with family members and children) that are realistic enough to be jarring long after one wakes from them and proves them to be shadows. I had two or three of these with terrible intensity during my induction and consolidation chemotherapy and noted them in the blog at that time -- hadn't had one since and this wasn't *quite* as bad, but it does make we wonder if this curious side-effect is a result of Velcade and Dex (the latter of which I received in very high dose during induction and consolidation) rather than the other chemo agents. Has anybody else experienced these dreams?

An explosion of granulocytes!

2010-04-29T01:25:00.000-07:00

So today I went back to Dr. GD's office for a Velcade infusion. They drew my blood, and came back with the CBC.

Interestingly (or perhaps alarmingly) my whites are at 14. I thought I read it wrong at first -- i thought I was reading Hemoglobin! My white have been above 6 only once since September.

Almost all of this coming from granulocytes -- immature WBCs that are the least suppressed by Velcade and Revlimid. I suppose that's good -- if all three kinds of major WBCs were off the charts, I'd be worried something was wrong with my white cells.

As it is...I'm not sure what to think. I'm not sick. I haven't been infected with anything. I don't have a fever.

Now...if I was in Arkansas, they'd have run a C-reactive protein (CRP) to find out if I've got anything else going in. GD wasn't even in today, and although I could have told them do run CRP, they don't normally do it there anyway. My frustration with them continues.

Anyhow...I guess I'll wait until next week and see what happens. If I've got leukemia now, one week won't matter!

Meanwhile, everything else is moving along. I went on a run this morning -- I'm in the worst shape of my life. My legs started cramping after half a mile. It's frustrating because I know I need physical therapy but the demands of my job will not allow it. I'm going to have to work out some kind of compromise with my boss after my current deal ends -- which I hope will happen in the next few days.

Took Senna this morning -- nothing yet. Will take another in the morning if need be.

And that's all the news that's fit to print for the evening folks. Nitey night.

No Alpha Lipoic Acid...and now I remember why.

2010-04-26T06:57:00.000-07:00

I had taken some Alpha Lipoic Acid for a while, rather sporadically and without too much conviction, during the time I was on thalidomide. This is a pill (though it can also be given intravenously) that is used with diabetic to combat neuropathy, and it's also been recommended by some Myeloma centers (for example, Dana Farber had it in their regimen, at least in 2006, as can be seen here.

However, a more recent paper presented at ASH in 2009 is titled Alpha Lipoic Acid (ALA) Inhibits the Anti-Myeloma Effects of Bortezomib. That's pretty dry, as far as light reading goes. However, anything that makes Velcade (Bortezomib) not work as well is off limits.

As I type this, there's no pain or numbness. It feels like my shins are asleep, if that makes sense to anybody. Except I wouldn't say the tingling is significant...it's barely there. Yet still, enough to notice.

One reader was kind enough to mention B vitamins. I do take, on my Revlimid nights, something called Folast. This was supposed to be a generic form of MetaNX -- a complex of folic acid, B6 and B12 -- which is used to combat diabetic neuropathy. I read here, however, that Folast has an inactive form of one of the B vitamins, which makes it not as effective. MetaNX uses the active form of these vitamins. So I better fight for the non-generic!

This post is a little link-happy but this information is specific enough where I wanted people that might be interest to be able to read the same source materials that I'm reading.

Tingly feet...

2010-04-25T23:33:00.000-07:00

Well...I think it's starting to happen. I wouldn't call it painful, I wouldn't even call it distracting, but if I think about it, I can feel a little tingle from my ankles down. The dreaded peripheral neuropathy.

Now since I didn't get this while on Thalidomide, it's coming either from the Revlimid or, more likely, the Velcade. And that's a type of neuropathy that hopefully goes away with a reduction in that medicine. Of course, the little reminder from my bloodwork the other day indicates that I'm not ready to cease Velcade. But I wonder if we might want to taper it back from the 1.3mg/m2 that I'm currently enjoying to the previous 1.0mg/m2.

Something else for BB when I meet with him in a few weeks.

In other news, I remain hopeful that they'll be able to do a kyphoplasty (aka "poof up" my vertebrae) when I go to Little Rock in a few weeks. Wouldn't mind getting back the height I lost.

I've also decided that I'm going to submit myself to the full battery of tests while there. I was thinking of bagging the PET since I don't need more radiation...but since I'm not yet satisfied that I'm in the most complete remission possible, I'd like to see what's going on. So I'll do that, the horrible 2-hour full body MRI, the bone marrow, the works.

I'm looking forward to seeing a few friends, and also to eating Whole Hog BBQ!

Thai food and velcade do not mix...

2010-04-23T12:43:00.000-07:00

I have come to the conclusion -- after two similar experiences eating spicy thai food from a restaurant that I used to love -- that either my constitution has been radically altered by what I've been through, or there's a specific reaction between an ingredient in that food and the meds that I'm on. Anyhow, long story short is I was far sicker than any chemo last night. Who knew the primary ingredient in Chicken Gra Pow was melphalan?

For reference next time, I will attempt one Senna pill on Wednesday morning. Tuesday night is too soon; Wednesday night a smidge too late.

Helpful commentary from BJ

2010-04-21T11:25:00.000-07:00

I fax the labs -- that my local doctor here has had for two weeks without telling me about them -- and an hour later I get a thoughtful response from BJ that cross-references the last blood I sent to Arkansas. And this response, while recognizing the limitations of a non-doctor response, is about 100X more helpful than what I got yesterday.

Patients: no matter where you choose to be treated, and no matter what philosophy (control, cure, curcumin) you embrace, demand that doctors treat you as someone who understands their disease, and who is entitled to know the results of every test on a timely basis. It's your body!

Anyhow, here's the news from Arkansas, which is both a bummer (I have not been consistently immunofixation negative) and somewhat reassuring (this is probably the sign of recovering marrow rather than myeloma):

This is the language found on almost all your reports, fairly consistently, describing your [immunofixation results]:

Immunofix. Serum on March 8, 2010. The original IgG lambda M-protein may be present. An indistinct band is present in the position of the original M-protein. Plus additional indistinct IgG lambda and IgG kappa bands.

The biggest difference is that the original monoclonal band was with a heavy chain (IgG) and a lite chain (lambda) and [the report you faxed] shows a faint monoclonal free lambda light chain without a heavy chain which is not your original clone.

My pea brain is not equipped to analyze what that means, but it probably means nothing. Every once and a while you have what are called oligoclonal faint bands which is seen in recovering marrow. Good conversation to have with [BB]. Right now I would say poof, nuttin! Maintenance is usually for 3 years because that is the population that seems to have the ‘cure’ signature. Again a very notable conversation for [BB].

A few things to highlight: responsiveness to a patient they haven't seen in person in three months, enough data for me to make my own conclusions, and an admission of where the knowledge is incomplete. Were I interested, I could get BB on the phone to bottom this out today, but I will see him in a month so there's no real urgency to it. Also, I'm sure they would have contacted me on March 9th had they not seen this before and discussed the same issue (oligoclonal bands as a good sign) with me once before.

Again: regardless of your philosophy on this disease or your physician's philosophy, demand to be treated like an adult and get whatever information you want. I understand many people don't have the desire to dive into the information the way I do, so your mileage may vary. But beware the doctor that puts data into a black box and refuses to share it. I spoke with the wife of one patient my age recently and her experience with her husband's doctors has been AWFUL -- as in they don't know the result of bone marrow analyses done WEEKS ago.

Don't stand for it!

A bit calmer now...so some perspective!

2010-04-21T07:20:00.000-07:00

Thanks for the words of support in response to yesterday's little bump in the road.

Having thought about it a bit, of course I wanted to never see any trace of anything wrong with me ever again, and I believe I'll get there, but I'm not there yet. Pretty simple logic: if I had no myeloma cells left in my body, what would be the purpose of maintenance therapy? BB knows this, hence the VRD that I'm on for at least another 28 months. If, in fact, this was a busted up piece of a monoclonal protein that wandered into the bloodstream, it's evidence of the need to continue maintenance, and it will get obliterated by the cocktail that I'm on, along with whatever cell created it. I will stick with the program, then! Onward!

Now the failure of my doctor to get me my labs is another story. My friend Sean, whom I met during transplants in Little Rock and whose unfailing good spirits and positivity are quite inspiring, noted that he goes to an infusion center that is not manned by a hematologist and they follow BB's orders to the letter. They draw blood, call Arkansas to confirm the counts and get approval for the velcade infusion, send the blood to Arkansas for further analysis and administer the velcade. That sounds like a good solution! Perhaps I will seek one of those places out.

By the way, Sean maintains a blog here.

Unsettling lab results, and GD exposed as a control-the-disease sheep in wolf's clothing!!

2010-04-20T16:42:00.000-07:00

Argh.

Went to get my Velcade today, and to see GD for my once-a-month visit.

Very unsatisfying.

I asked to get my lab results. He said "everything looks fine" regarding the APRIL FREAKIN' FIFTH labs, which are now two weeks old. Except everything is NOT fine. There is a "faint lamba light chain" present under immunofixation.

Now, this doesn't mean anything, necessarily. I'm most likely still in remission (though I had to check in with BJ in Arkansas to get this information, rather than Dr. Numbnutz). He evidently didn't think it was worthwhile mentioning this to me. Which brings me to my first item in a list of how things are going to change. I am getting my damn labs every freaking week if I have to turn that damn place upside down. Otherwise I am going elsewhere. This is total BS.

Anyhow, after I pried this information out of him, I asked him if it was an indication that I had lost remission. He said it wasn't an indication of there being a monoclonal band, necessarily. An immunoglobulin has two long pieces, called heavy chains, and two small pieces, called light chains. One of these is a lambda light chain, and another is a kappa light chain.

There is a lamba light chain under immunofixation in my April 5th lab.

I wound up talking with Dr. GD for about 20 minutes, during which he said that he thinks people should try to control the disease, that he doesn't doubt that BB is curing people but that it's not that big a deal to have residual disease because a lot of people have it, and even if people live 20 years in remission is doesn't mean they are cured, blah blah blah.

In the words of The Bard: "this guy can go piss off!"*

All this time, I've been getting maintenance therapy (he believes it helps control the disease, but of course hadn't read the article in the Myeloma Beacon and doesn't know what a PCR test is) from some doddering bunghole who isn't with the program, doesn't feel the need to inform me when I've potentially lost remission, etc.

I contacted BJ, who told me that it could be part of an oligoclonal chain that was picked up and that she is highly doubtful that I have lost remission. Unfortunately, it says "monoclonal chain" right on the damn labs that this stupid buttpipe didn't see fit to tell me about for 15 freaking days.

ARGHHHH!!!

The reality is, I have probably not lost remission -- but 100% of the time that somebody loses remission, this is how it starts. So once again, my nerves are shot.

On the plus side, light chains in both urine and blood are normal, beta-2 microglobulin is normal, IgG is low, protein is normal, there no monoclonal protein under SPEP...plus I am on velcade, revlimid and dex in strong enough doses to kill whatever's left...plus I know I've got to stick with the program for another 30 months or so before I've killed the last of it off. So none of this should be alarming...although for somebody accustomed to not even thinking about the disease, it is jarring.

It also highlights some of my issues with Dr. GD, I suppose.

_____

*Note: This is not actually Shakespeare, thus making my comment a brilliant (and perhaps even sardonically irreverent, as Dr. Pearl might say?) joke.

Addendums (end-ums?)

2010-04-15T13:18:00.000-07:00

1. Taking Senna Wednesday night too late. Wednesday AM seems like good starting point for next time.

2. My jaw / teeth are not falling out of my head. That's good. Didn't want to end up like this poor guy.

http://img385.imageshack.us/i/425x353kz6.jpg/

I think that may be a still photo from a show I saw on the BBC entitled The Worst Teeth in Britain. It was almost impossible to watch but it was also one of the most entertaining hours of TV I've ever seen!

3. I underreported my platelet count the other day -- it's 133, which is good news. Sure to fall again now that I started Revlimid once more.

Fine-tuning maintenance...

2010-04-14T06:08:00.000-07:00

I've decided that my haphazard trial and error with respect to Senna (anti-constipation med) is a failed strategy and I need to be more meticulous and recording what I'm doing.

An aside: doesn't "anti-constipation" sound much better than either "laxative" or "stool softener." Shudder.

Anyhow, I am formally noting for next time that starting Senna on Tuesday night is not a good idea. Next week I will try Wednesday AM instead.

In non-poop related news, the following tricks (mostly mentioned by people that follow this blog!) have been extremely helpful:

* Take Dex at night!!!! While counter intuitive, the drug doesn't kick in for several hours so if you take it at bedtime, you'll get a good five hours or so before you have issues.

* Over-the-counter magnesium supplements for the Revlimid-driven leg cramps. Mine has Zinc and some vitamin B in it as well. The stuff I am taking can be found here. I take three pills a night on the nights that I take Revlimid.

As for the rest of maintenance, I got another shot of testosterone yesterday (this time without a prostate exam -- I greatly preferred this time to the previous one!) I would say that there is a marginal increase in mojo.

It occurs to me that some blog followers (including those in my family) may not get the pop culture reference associated with my mojo-related comic relief photos. I'll have to explain it to you another time.

As my normal nurse is on vacation for a few weeks, I'm going to a hospital rather than the doctor's office for my velcade push. This experience made me feel thankful that I can normally do this in a doctor's office (MUCH less administrative hassle, much less time taken) and also made me realize how efficient Arkansas is. The efforts made to keep the room clean in Arkansas (e.g. wiping down the chairs with alcohol after after patient) and the efficiency with which labs are returned, etc. is pretty astounding by comparison to other facilities.

After a week off Revlimid, my counts looked pretty good! Some of this could be due to different labs, but my WBC was at 4.0, my platelets at around 115, and my HGB at 14! All good markers (relatively speaking).

I got rid of my cold -- FINALLY -- after about 20 days. The over/under is 10 days before I get another. Who's taking bets? :)

I did hear from another MM traveler that they get IVIG from BB in Arkansas, and that it enhances their ability to fend off colds and get over them quicker. I am starting to believe that BB knows more about this than my doubting oncologist in Encino, or perhaps even than the colleague of my primary care physician (who was less certain in her advice not to get the IVIG). We shall see. It will be a topic of conversation with Dr. GD when I see him next week, and with BB in May.

Lastly, there's something funky going on with my left ear.

There is an intermittent pulse -- like hearing a heartbeat there but much more rapid (up to 200 bpm) and variable. I asked my dear friend Dr. BM about this and he suggested trying a nasal decongestant spray so I'm gonna give that a shot and see what happens. I'm not concerned about it, but it's rather irritating and distracting.

That's it for now, folks.

Platelets and WBC back up

2010-04-08T05:04:00.000-07:00

Quick report on a few lab things.

This last Tuesday, platelets were up to 85 from 65 the week before. I went off Revlimid per my usual schedule on Monday, so they should continue to climb until I resume that particular wonderdrug on next Tuesday night.

WBC was up to 3.7, probably in response to this lingering chest cold which is down to about ten productive coughs a day and a few nose blows, so it's not that big a deal. Will be glad when it's gone. The over under on how long it takes me to get a new one is about two weeks. We'll see if I can beat that this time.

Everything else more or less steady as she goes.

I've got bad heartburn, despite taking Protonix, so I may pop another one. That's what's keeping me up. I was tired enough (long days at the office) to try to sleep last night without Ambien -- that was a mistake on the day after I took Dex. Oh well. More learnings for next month I suppose.

Feeling good, though, and with each day, more and more happy that I found BB and went through the aggressive treatment.

For those who might be new to this blog, I have a quick summary of some facts up on the blog of a friend, Phil Brabbs, who is a young guy that went for aggressive therapy in Michigan after meeting us in Arkansas. His protocol is slightly different and in some ways not quite the uber-aggresive approach that BB uses, but it nonetheless incorporates multiple chemo, a (single?) stem cell transplant and maintenance with the objective of curing the disease. Phil is an absolutely remarkable guy and we love his wife Cassie as well. They've been featuring other MM cases on their blog in an effort to educate people about various treatment options and experiences. I'm their guest for this week and my blurb can be found here.

Interesting news from the Myeloma Beacon

2010-04-07T05:53:00.000-07:00

There are plenty of blogs out there that report new developments in traditional and alternative cancer therapy and research. My friend Pat Killingsworth has an excellent one here.

My blog normally doesn't do that, but in a response to the previous comment, "J" noted a recent (as in yesterday) article in the Myeloma Beacon that talked about how a test called a polymerase chain reaction or PCR can be used to detect residual cancer cells after a stem cell transplant, and this article is important enough to comment on.

The real point of the article, which can be found here, is that maintenance therapy with Velcade, Dex, and Thalidomide "may be effective in further reducing the number of tumor cells surviving in the marrow after ACST to levels only observed with allogeneic stem cell transplantations." That is: cure.

Here's where I point out that my original hematologist said, matter-of-factly, "I don't believe in maintenance therapy." He pointed out at the time that City of Hope did not, that MAYO did not, etc. I heard this from another doctor recently who thought it was "inconvenient" to take six months out of one's life for all this treatment and then be chained to a doctor's office weekly for three years. Meanwhile, BB has been honing maintenance therapy with these agents since 2003, and now uses Revlimid instead of Thalidomide which the article said could further improve the already clear benefits of maintenance therapy.

Fifteen months ago, hardly anybody was doing maintenance therapy. And now, we see that it probably saves lives. The world is coming around. BB is right.

Now, unfortunately, even BB's protocol only cures about 60% of patients -- that leaves a lot who need other therapies to beat the disease. And I remain heartened by the continued focus on developing new drugs for these and other MM sufferers.

Hello to two new friends

2010-04-06T06:57:00.000-07:00

Still sick here -- inconvenient but not the end of the world.

I received an wonderful email last night, passed on by my wife from my wonderful sister-in-law Gail. A friend of Gail's, with whom I spoke at some point during my treatment (I can't recall -- chemo brain?), evidently determined at some point to go to Arkansas for treatment. I thought I remembered from our conversation that this person wasn't necessarily going that route, but in any case, he evidently did.

Turns out this person was sharing a transplant room with another person, who was also familiar with my blog, and as a result of reading it had also determined to go to Arkansas. Let me say hello to them both now, if reading: GB and PD, I'm so glad to hear you took your treatment by the horns and are taking the fight to your MM. I wish you every success in your treatment and hope to meet you in LR (or elsewhere!) one of these days.

Without belaboring the point, I was sent a very touching note that credited me with saving PD's life. This is obviously not the case: BB is saving PD's life. But I'm extremely thankful for any minor role this blog may have played in helping PD make his treatment decision. Both PD and GB encouraged me to ensure this blog is published, and I am resolved to do so, and have taken steps but it's just so hard to find the time to finish the job! I will do so, though.

So PD and GB, keep up the fight, and thank you very much for your kind words!

As for me, I've still got the tail end of this chest cold but it's tolerable. My platelets fell to 65 last week, which was troubling. I took my last Revlimid last night, and we'll see what the platelets are today. It could have been an aberrant reading (but I doubt this as I've got several ugly bruises). In any case, we'll see what they are today. That was a fairly sudden drop -- they've held pretty closely between 100 and 120 this whole time and I'm not sure what the sudden fall would be due to. Whites remained at 2.8 -- despite the fact that I had a pretty bad cold when it was last checked -- and HGB around 12.7 still. Everything more or less where we want it to be, especially M protein under immunofixation which remains non-existent.

I'm alive and (reasonably) well...just been buried at work! So an overdue update!

2010-03-25T14:25:00.000-07:00

Hey there folks. Sorry to vanish on you for a bit -- I've been working 18 hours a day, 7 days a week basically for the last two weeks.

Medical highlights:

* I got over my chest-cold about two weeks ago. I also got rid of my thrush. I subsequently saw Dr. GD who said that he would NOT recommend I get IVIG, because my IgG at around 530 isn't low enough to benefit from it. He sent off a letter to BB asking him if he was sure I should get it. In the meantime, Dr. RZ (a colleague of my primary care physician) also said it wouldn't do any good at my current IgG level. So no IVIG after all that.

* May have been the wrong choice, and I am now sick again. This SUCKS. This is chest cold number five since September.

* I am bruising like a grape from low platelets. My platelets hover between 100 and 115 these days, with slight improvement when I'm off the Revlimid for a week. My white count is probably not going to see the sunny side of 3.0 again unless I dose-reduce the Revlimid. It's at 2.9 now, and that's not good given the need to get rid of these damn colds. I am armed with the strong antibiotic they gave me before (Augmentin) and am taking that as well as Tamiflu. We'll see what happens.

* I got a intramuscular shot of testosterone from a new guy, Dr. LB, who unlike the other urologist said intramuscular shots were highly effective and he gives them all the time. This should help with muscle wasting, energy and mojo. We'll see if I turn into Barry Bonds.

* I have been blessedly free from the horrible cramps-in-the-middle-of-the-night, more or less, since I started that supplement with magnesium and zinc. I did get two horrible ones this past Tuesday, thought. So maybe Velcade + Dex + Rev > Magnesium supplements. The only thing I might add to the cocktail would be potassium, so perhaps some raisins and a potato on Tuesdays might come in handy.

* I will be heading back to Arkansas in May for the next round of follow-up tests, and to see if I can get a balloon kyphoplasty to restore some height by "poofing up" the two mangled vertebrae. As for the test themselves, we'll be looking for continued healing of my bones. There was a lot of progress made from September to January, and I had one additional course of Zometa. I'm not sure if it will be this time, or next time, but sooner or later they will be healed and I will have, God willing, MRI Complete Remission which is a key next step in ensuring that I'm cured.

I'm sure I'm forgetting something, but I've got to jump back on this conference call. More to come, with a resumption of my long-overdue-charts, soon! Along with, perhaps, some kind of rendering of my backside (complete with marks for bone marrow biopsies) in response to a request from a fellow MM sufferer. :)

Bone marrow biopsy blemishes and IVIG update

2010-03-12T12:54:00.000-08:00

Hello there folks!

Two unrelated little things, which we'll do in reverse order.

I will be getting IVIG a week from Tuesday, along with Velcade, both administered by Dr. G at UCLA's hospital. IVIG is evidently a money loser as an infusion unless it can be done in a hospital where other services are provided and charged for. I'll be getting my Velcade done then as well. The IVIG is a SIX HOUR infusion so it's gonna be a long, dull day for the kid.

I am off Revlimid this week, so I am not taking the magnesium supplements. So far, no leg cramps. I'll go back on them when I resume Revlimid on Tuesday. Hopefully my counts can recover a bit this week -- WBC, HGB and Platelets are all lower than I'd like.

Now, as for the dime-sized black spots on my butt, I figured it was time to do something about them or at least look into the situation. My first bone marrow biopsy was done by Dr. SH in Beverly Hills and it left no mark. Subsequent to that, between bone marrows and gene arrays and fine needle aspirates I have probably ten black spots on my butt. It's not the end of the world, but I also look (as I've said before) that I went hunting with Dick Cheney and he unloaded a bunch of buckshot in my backside.

The dermatologist told me there are pigmentation issues with these scars and prescribed a bleaching cream that can be used to touch them up. He also noticed there are indentations in these areas, which can be filled in. I thought I'd try to clear up the color first, since that sounded less invasive. So I bought some goop and we'll see if that does the trick. A thousand words will have to suffice in lieu of a picture, I'm afraid.

Closing this back around to Dr. G at UCLA, I spoke with him a bit about my therapy. He said that regardless of whether or not I was cured, I was in "a very good place." Now, he is a general Hem / Onc (probably less Hem than Onc) so he's not a Myeloma specialist per se, so frankly his opinion isn't worth all that much in terms of illuminating the nuances of my therapeutic choices and their ramifications. But it's all good at this point. I find myself checking the most recent slide from Arkansas that appeals:

This is probably a fairly easy chart to interpret. It shows compete remission duration over time for low-risk versus high-risk patients in the Total Therapy 3 trial. With five years of data now, 90% of low risk patients that achieve complete remission remain in complete remission five years later. And the curve is flat after about 40 months or so...that is, no patients lost remission after 40 months. Of the 209 patients that remained in remission at the 40 month period, all 209 patients are still in remission at 60 months. That's not coincidence. That's cure.

Which brings me to the following chart:

Fitting these to a regression curve, the cure fraction for low-risk patients that achieve complete response is 87.6%. And the farther one is out on that curve, the better the odds are.

Very good news for this sub-group of patients.

This chart, unfortunately, also points out the tremendous amount of work remaining to help those with genomically-defined high risk disease -- as well as those who lose remission despite having a low-risk signature. Fortunately new classes of drugs are coming out that will hopefully tell a much brighter story for Myeloma sufferers!

Feeling better, and some reflections...

2010-03-08T15:33:00.000-08:00

Happy Monday, my friends.

First, thanks to those of you who were kind enough to write to check up on me!

I want to emphasize that when I report on feeling crummy, as I did at the end of last week, I am doing so in the interest of faithfully recounting what's going on so that others can learn. I am not complaining -- far from it. I'm glad to be alive and happy to accept the relatively minor side effects of maintenance therapy!

I was thinking about this, and one important notion occurred to me. I have been guilty, to some degree, of viewing the past seven months as the first seven months of maintenance, which is a three years process before I can say I'm through with therapy and (hopefully!) cured.

Instead, I should be viewing this as seven months, already, of disease free life. Had I opted for disease control rather than trying to go for a potentially curative approach, I might have a year or I might have three or I might have five years of remission. Nobody really knows. But seven months is seven months, and it's nothing to sneeze at, and I should be enjoying every day. I think this is a very important message. About 80% of the time, I'm living my life as though I don't have disease (which in fact I don't). The other 20% of the time I have to pop pills, get infusions, deal with side effects, whatever. But in any case, I'm in a group called "progression free survival" or "event free survival." So I should be enjoying every day -- and that's my message to all of you. Enjoy every day!!

For those interested, my chest cold is 98% gone. The thrush is, I *think* gone, and the GI distress is mostly gone although I'm sure I have been wiped clean of helpful digestive tract bacteria so I'm going to continue to pop acidophilus pills for a bit here.

I also wanted to touch briefly on an interview that Parade magazine did with Kathy Giusti of the MMRF. I have nothing but deep, deep respect and gratitude for this woman and her continuing efforts in the fight against this disease. But I have to say, the article was not very uplifting, despite assertions that it was. Among other things, Kathy said that "Myeloma is uniformly fatal." And she continues to focus on her own syngeneic transplant (from an identical twin, which confers the curative benefits of an allogeneic transplant without the risk of graft versus host disease) as being a temporary remission. In the case of the first statement, it's hard to view that as uplifting...I think it's defeatist and at least somewhat misleading. In the second case, I know she wants to maintain a sense of urgency to her efforts and I applaud that -- but I also hope she knows that she's going to be around for a long time.

Anyhow, that's enough rambling for today. Enjoy today, and every day, people!

Did somebody get the name of that bus...

2010-03-05T13:00:00.000-08:00

Hello folks. I have been in gastro-intestinal hell for the last 36 hours. A hell-spawned conflagration of extremely spicy Thai food for dinner on Wednesday night (from which I may have gotten food poisoning) combined with, I am sure, my stomach being wiped clean of any helpful bacteria by the strong antibiotics I am taking to get rid of this chest cold (which is STILL not totally gone, though it is finally almost out of my system) plus the thrush plus the side effects of Dex (in this case, heartburn) plus the competing dynamics of Revlimid + Dex (constipation) and Senna (taken to combat this)...

Anyhow let's just say I was sicker yesterday than at any time since my transplants, and in some cases it was worse! It's been 36 hours and I am only now beginning to feel like myself again. Blecch!

I'm leaning towards getting IvIG next week now that most of my symptoms have gone from the outgoing cold. Hopefully that will ensure I don't get every little germ that blows through.

Have a good weekend, everyone!

P.S. Thanks to all for the tips on probiotics. I will be taking a few days' worth of acidophilus pills, and eating some yogurt, to help rebuild the good bacteria that's been wiped out by the Augmentin.

Quick update

2010-03-03T12:51:00.000-08:00

Chest cold is finally starting to resolve. My white count yesterday was at 4 -- a measly 4. That's basically below normal, and this in response to a lot of crud going on with me. So the Revlimid and Velcade are definitely leaving a mark, so to speak. Because GD's office doesn't do CRP, I can't cross reference white count against actual activity that should be driving it, so it may be that 4.0 isn't that big a deal and the real issue with me getting these colds is the low IgG (around 570 still, versus normal range of 700-1400 and my incredulous peak of 16,000!!!!! (over 90% of which was crappy monoclonal cancer).

As for the thrush, I'm rising my mouth with this hideous rotten tang called Nysantril or something like that. The docs here will know. I was swallowing it but then I realized the thrush is only in my mouth, so I'm rising around and spitting it out which makes it about 30% less awful. I have no idea if it is gone or not...will need to see the doctor soon on renewing my Lipitor (which is how this whole journey started in October of 2008). But I'm nearly finished.

Current plan is to try to get IVIG (which really, it seems to me, is IvIgG but whatever) next Tuesday. However I am so busy at work I haven't even had time to try to set up the appointment! In fact I've already delegated that to PinnacleCare, who are awesome, but I don't even have time to call them back!!

Work work work...

The ongoing saga of this chest-cold...

2010-02-25T09:17:00.000-08:00

Tuesday night, when I returned from dinner, I felt pretty lousy. I realized I was running a fever. It was getting worse. I hadn't had a fever since I left treatment in Arkansas, and while it's probably nothing, people get very concerned about it when it gets up there and won't break. Fever is a common side effect of Velcade, although I've never had one from its administration and I'm six months into therapy with that stuff. Dex, as an anti-inflammatory, also reduces fever, so that is probably one of the reasons they use the two in tandem.

At any rate, my fever climbed from 99 degrees to 101.3. My poor little girl was so sad, because she knows I got the cold from her. I explained that everybody gets it, and I was glad I got it from her and not from somebody else, and that I would rather be around her and get sick than not be around her and not be sick. That made her feel a little better. I love her so much!

Anyhow, at 101 we call the 24-hour call number for Arkansas. It's around 10PM by now, but a doc from Arkansas calls back in a few minutes. He's 99% sure it's just a virus, but he wants me to take some tylenol to see if the fever will come down, and double up on my TamiFlu (which I had been doing), and take Augmentin (which I had been doing) and then get some blood cultures done as well as a respiratory viral culture.

The fever broke a couple of hours later, so I managed to avoid the hospital, but still felt awful. I felt a little better Wednesday morning and managed to get into the office of my primary care physician -- the wonderful man who found my disease early enough to put me in a good position to battle it -- yesterday afternoon. I met with his colleague since he was not around. She, like he, is an infectious disease specialist -- turns out she was incredibly helpful to speak with because she knows all about immunosuppressant treatment and the impact of that therapy, and what can be done to ameliorate it.

The first thing she said is that being on Dex once a week is the same thing as being on it constantly. My T cells are being killed by it. It actually, she thinks, has nothing to do with suppressing the IgG whatsoever -- it simply makes the system less able to fight the medicine that is used to suppress the IgG, and because of its anti-inflammatory properties is counteracts a lot of the side effects of Velcade. For example, fevers. She thought that if I were to discontinue dex, I would be much more likely to get fevers from the Velcade. She wondered if perhaps the recent increase in Velcade and the recent decrease in Dex could have resulted in the fever -- I told her that was an interesting theory but Occam's Razor* dictates that I got the fever from my daughter who had the same symptoms four days earlier.

She looked in my throat and told me I had thrush. Yuck. I remember thrush was one of the concerns in Arkansas during primary treatment -- they gave me Fluconazole to combat potential thrush. Some people, like my friend DP who maintains a blog elsewhere, were unlucky and got it -- it sounds awful. So I really didn't want any! I asked if I should go back on the Fluconazole and she recommended against that because that's hard on the liver (I remember this having an impact during therapy, though nothing serious) she recommended a mouthwash whose name escapes me. We'll try that for a couple of weeks and it should clear up, she thinks, and if not we'll go to the Fluconazole. She said that it was not yet severe, and that I will likely just need to do this quarterly while I am on the dex to keep it away.

She pointed out that TamiFlu is not effective against H1N1 if people have taken it prophylactically. So that answers that question. I'm not gonna take it any longer until I have a cold or flu that is flaring up. That will save money and be one less pill I have to take. She said that H1N1 will be back as it is making the rounds outside the US right now. She said that it's not seasonal, unlike the regular flu (regular flu season being over). I found this interesting and a little alarming, but I'm not a big "oh noes [sic] the end of the world is near!" H1N1 phobe.

She told me I should get the blood cultures done. I wanted to push for Tuesday, but she insisted they be done today, so I'm off to the infusion again this afternoon.

She also suggested that I go on prophylactic antibiotics. One she mentioned that was popular could decrease white count -- I told her that wouldn't work because the Revlimid is depressing my whites too much as it is, and she acknowledged that Myeloma docs generally don't like that particular drug. One cycle wasted on that conversation! :) She said there is another drug, however, that does not have that side-effect. She is going to call Arkansas, speak with either BB or Dr. EA, who is responsible for all supportive care, and make sure it's okay.

Meanwhile, I'm off to have blood cultures drawn this afternoon. The fever is gone, but the hacking cough remains. Ugh.

As for the IVIG, no point in getting that until I get over this. First, it won't make a difference at this point, and second, they want to be able to track my response to the IVIG, and some of that could be masked by flu-like symptoms so I want to make sure we know what's causing what.

And that, my friends, is all the news that's fit to print for the day. I still have those WBC charts to put up soon!!

*Occam's Razor. One of my favorite little ironies.

This is a critical element of logical thinking and an historical moment for reasoning in man's history. William of Occam came up with the simple maxim that the most obvious answer is the most likely one. For example, if there is smoke coming out of your house, the most likely answer is that it is on fire.

The irony, which I find hilarious but nobody else seems to laugh at, is that when this maxim was popularized, the most obvious answer to ANYTHING was "invisible gremlins did it."

"My horse just fell over dead." "Aha! Invisible gremlins did it." "However did you deduce that?" "Occam's Razor, my dear boy."

"My wife was drinking polluted water and now has the Plague." "Aha! Invisible gremlins did it!"

You see what I mean.

I can hear the peals of laughter coming in from all around cyberspace...

IVIG to the rescue?

2010-02-23T13:20:00.000-08:00

Got a call from one of the nurses at Arkansas today. I think she must have called the house first and spoken with Jill, who probably reported that I'm have a problem with these stupid flus / colds.

The nurse told me she spoke with BB who proposed I get an infusion of immunoglobulin. Basically beef up IgG with some donor cells. I'm all for it -- we'll keep my crummy, wants-to-produce-myeloma IgG suppressed and help it out with some better IgG.

I think that means more time in the chair, and side effects including headache, etc. etc. but frankly I gotta stop getting these chest colds!!

I am thankful for their proactivity in reaching out to me and recommending this course of action. Not something Dr. GD would have done on his own, I don't think. I love the aggressive bias-to-action approach that BB embodies.

Spoke too soon...

2010-02-23T08:23:00.001-08:00

Lying on the couch watching some TV last night, all of a sudden a stabbing charlie horse in the bottom of my left foot. There must be something to being in a recumbent position that triggers these things because they don't happen when I'm walking around. Anyhow, I had potatoes with my dinner, had been drinking plenty of water, and have been on the Magnesium pills, so none of that is foolproof!

I will continue to monitor this and report back.

Oh, and thanks to Sean J for the Magnesium tip!

2010-02-21T22:58:00.000-08:00

FYI, I have been trying to keep hydrated and also take magnesium for the leg cramps...and so far, so good. A couple of false alarms last night, mostly because I wasn't fully hydrated (a few glasses of wine earlier in the evening, plus coming off Dex and peeing everything out, equals not that hydrated).

But I'm pleased to say I've been taking ZMA at the suggestion of my friend Sean. This contains Zinc, Magnesium and some Vitamin B. It's frequently used by bodybuilders to increase testosterone (need this!), rebuild muscle mass (need this) and whatever else...plus the Vitamin B will help combat neuropathy and the Magnesium -- so far, anyhow -- appears to be keeping the cramps away.

I'm keeping it up -- three big-ol horsepills every night. But so far, so good!

Sorry to drop off the face of the Earth!

2010-02-21T21:16:00.000-08:00

Well, work has been very demanding for the last two weeks. It is good to be back and fully engaged, but it has been a constant stream of work from the moment I wake up to the moment I go to sleep for about two weeks now. Not so stressful as to induce illness -- I'm doing a good job of managing that. But it is certainly time consuming! So my apologies, dear readers, for not getting back on here sooner.

I think of my friend WB, who is done with induction and appears to be doing very well! I have that white blood count graph I've been meaning to post for two weeks now...forgive me, Bill, I'll get it there soon! And then I'll move on to electrolytes since you'll be going through your transplants soon and you'll want to see how that all shakes out!

Kathy Giusti of the MMRF lamented to me that she got every cold in the world when she was on Revlimid. I contrasted this with a person I met in Arkansas -- who was nice enough to buy the wife and me some lunch without knowing who we were, which was followed by a very nice conversation. That person said they never got sick any longer.

I am thinking both may be true. I am thinking that once I go off Revlimid, I might have a spiffy immune system. I also think, however, that Revlimid's purpose is to suppress the immune system and it does a damn good job because I HAVE MY THIRD CHEST COLD IN FOUR MONTHS and it's getting VERY, VERY OLD. I literally just got over the last one three weeks ago and I've got it again.

I am doubling up on Tamiflu and also taking Augmentin, which CR prescribed for me to knock out the bacterial aspects of the bronchitis. Seems to be helping. We'll see how long it takes me to get through this. On Tuesday I will get a look at my blood counts. My WBC was only 3.0 last Monday; pretty low! I wonder if it has spiked to get rid of what ails me?

More news this week, I promise. Be well everyone!

A quick response from BB on leg cramps.

2010-02-10T07:04:00.000-08:00

I emailed him last night to tell him there's an error on his website (in one place it says Myeloma is not curable!) and I mentioned in passing the leg cramps. Now mind you, GD (who I do think is probably a good doctor) sort of fumfered* a bit and initial said nothing other than "sorry, can't give you quinine." With a bit of prodding suggested potassium. Then two minutes later added Magnesium.

Bart immediately told me to take Elavil, 25mg, nightly.

I did some research. It's another tricyclic antidepressant. I have avoided taking the Cymbalta that was prescribed for something else (I think neuropathy) and found another remedy that worked. I'm not depressed. If I was on both these things, I'd be a little loopy -- but probably really happy!

I'm not sure what I'm gonna do with this -- probably try potassium, magnesium and calcium supplements. My thighs hurt a smidge right now...could be from the dex, or the velcade, or even from the Zometa (but I doubt it as the pain was there before I got the Zometa yesterday). Nothing major but enough to make me wonder what's going on.

*My new favorite word.

Thin walls at GD's office...

2010-02-09T17:07:00.000-08:00

Got my second infusion of Zometa today. Hopefully when I go back to Arkansas in May, all those bone lesions will be gone.

Velcade was upped to 2.5mg from the 2.0 that I was getting. It seems to me that this is slightly less than the 30% increase that BB wanted, however GD said it was the "maximum they could give." I explained that BB said he gave this to little old ladies, etc. GD was unmoved. Oh well. I'm sure a 25% increase will do the trick.

As most of you here suspected, the leg cramps are from the Revlimid and Velcade. I got some more last night. GD said that they sometimes prescribe quinine but that lowers platelets and mine are too low for that kinda stuff. I'm going to try potassium and magnesium supplements. I used to have magnesium tablets from way back when in the hospital in Arkansas, but I'm pretty sure I pitched them in an effort to reduce the size of the giant medicine sack that I've got under my sink. I may need to buy some more over-the-counter. As for potassium, it's back to potatoes, sounds like. We shall see what happens.

Other than all that -- and another fairly painful port access from the inept nurse -- it was pretty much business as usual. Except I heard through the wall a woman being counseled for her Myeloma. It was all I could do not to scream through the wall or try to knock it down. This woman has already been on other therapy but it hasn't done anything. So after consultation, they are going to start Velcade and Dex (what the hell was she on before? the mind boggles...could it possibly just have been prednisone?) No mention of Revlimid or Thalidomide. But after a while, with the minimal amount of Velcade and Dex, if she tolerates it (she was young, the doctor said) they will add Cytoxan.

I wanted to bang on the wall and scream.

Then I heard her say "I trust that what you're doing is the right thing" and I wanted to tear the wall down.

Oh well. None of my business.

I feel sorry for that woman. Even if one pursues a control-the-disease only approach, this mishmash of drugs isn't the best way to do that, seems like.

Two incidents of acute discomfort, or, OWWWWWWWWWW!!!!!!!!!! !#!&@**#!!!!!!! (and a Velcade schedule comment)

2010-02-03T05:33:00.000-08:00

Hello folks.

Well, sadly the old portacath pains are back, entirely as a function of poor technique on the part of this nurse at GD's place. The great and painless nurse that quit assured me that her colleagues were capable, but they are not. I was searching for a comical descriptor..."merciless witch" was one that came to mind but she is too sweet to be called that. Likewise, "vicious, needle-wielding harpy" is also probably a little over the top. "Nurse with poor technique" is accurate but not very spunky as far as names go. C'est la vie.

Anyhow, accessing the interior portacath wasn't quite as bad as the searing, awful pain that it was three months ago but it certainly hurt like heck...kind of like somebody took an awl and shoved it into my chest half an inch. This was still hurting when I went to bed eight hours later.

It was not, however, hurting at 3AM. At 3AM, I woke up with a stabbing pain in my right calf. It was the worst cramp I'd ever experienced. I'd gotten a couple of these over the past week -- they are quite rare for me, thankfully. And I hadn't thought anything of them, and probably wouldn't have thought anything of this one. Except that at 3:01AM, this became only the SECOND worst cramp I'd ever experienced because I then got a cramp in my left calf, same basic place. These were very bad, people. I got up and found I couldn't put any weight on my legs.

After a minute I shuffled over to the computer and with the help of Wikipedia, ruled out deep vein thrombosis. So that's good. Unfortunately, neuropathy can be associated with these cramps.

Cramps, of course, could be a million other things including side-effects of my meds that have nothing to do with neuropathy. I am mindful of BB's admonition not to overanalyze myself.

Having said that, it's now almost three hours later and my legs are still sore.

Jill observed that I didn't have Velcade last week, so maybe my body just wasn't very happy about it. That's a possibility.

On that topic, I realize that I didn't cover off the issue of whether or not there are any breaks in the Velcade. Here's what BJ said: Velcade interferes with the testing, so no Velcade is given while in Arkansas. This equates to a break about every four months of one week.

In that week, I noticed that my red counts crept up (from 12.9 to 13.2, although this could be noise) and my white counts crept up (they were 3.8 two weeks ago and are at 4.2 now, ignoring the temporary spike to 4.8 in response to my cold). On that note, I have a lingering productive cough (say 10 times a day versus 200 times a day before the Augmentin). Hard to finish these things off with a depressed immune system!

White Blood Count graph is next, with special consideration for my new friend WB who started induction a couple of days ago and will likely be familiarizing himself with neutropenia soon. Hopefully it will reassure him to see the ebb and return of white counts in response to therapy.

Graphs, first in a series: Monoclonal protein

2010-01-31T09:38:00.001-08:00

Sorry to take so long with these, folks, but I've had to dig around for some of the data. Once I got to Arkansas I was pretty meticulous (with the help of my lovely wife) at keeping this data organized, but pre-Arkansas and sometimes in between treatment phases I was a little less consistent.

What I hope to do with these graphs is provide some useful information for patients going through therapy, as well as interesting data for the curious. If statistics aren't your thing, skip over the stuff. I'm erring on the side of providing more information rather than less.

The first graphs are of the monoclonal protein spike, the bad protein generated in my blood by the Myeloma. Most MM patients secrete this protein in their blood; some do not, however. This protein is an "immunoglobulin" that the immune system creates in response (or in preparation) for an invader in the system that needs to be killed off. Normal protein matches these immunoglobulins against specific invaders and there is a spectrum of diversified proteins in the blood to deal with the myriad invaders. Monoclonal protein is one specific protein that is replicated out of control, and it is useless to the immune system -- worse than useless, in fact, since it crowds out the useful stuff.

It was through observing an elevated total protein number in my routine labwork that my original primary care physician suspected something was wrong. The reason the total protein was elevated was because there was all this evil protein kicking around in my blood. It was about half the protein in my blood, in fact, at diagnosis.

These are all measured in grams per decileter, by the way.

The first graph shows the total protein over time from the "pre-diagnosis" draw at my hematologist -- a couple of weeks before the bone marrow confirmed that I had myeloma -- and has the dates of my various therapy treatments superimposed.

If you "doubleclick" on the graph, it will open in a bigger window so you can see it better, by the way.

This second graph focuses more closely on the treatment phase only -- this makes the trendline easier to observe.

This last graph is done on what is called a "log scale." For those not into statistics, let me try to explain briefly...traditionally graphs are shown on a linear scale. So if you are looking at the "Y Axis" (that's the vertical axis) and observing the amount of protein over time, the distance on that axis between 0 and 1 is the same as the difference between 1 and 2. On a "log scale" the distance is expanded so that smaller amounts don't get lost on the graph. The distance between .1 and 1 is the same size as the difference between 1 and 10! And the distance between .01 and .1 is the same as the distance between .1 and 1. This is probably easier to observe visually than read about.

This graph is useful for a couple of reasons. First, you can see the smaller measures more clearly. And second, you can observe the way the protein is reduced by therapy. It is reduced logarhythmically...which means it looks like a bit of a weird curve on the linear graphs above but actually appears linear -- that is, a pretty straight line over time -- on the log scale chart. I've superimposed a line here so you can see what I mean.

I realize that this last bit is probably overkill for most, so I apologize!!!

Test results in, and the are GOOD!

2010-01-28T09:36:00.001-08:00

Hello people.

Getting ready to depart Little Rock. It was a very successful little trip!

First, my test results, furnished rapidly, in detail, and without me having to ask for them.

* Blood:
- White count up to 4.52 (in response to my cold, which is going away with the help of Augmentin, a strong oral antibiotic)
- Hemoglobin is 12.9, a little on the low side but to be expected given the Revlimid
- Platelets at 116, same comment
- RDW is up at 14.4 and the abnormal red cells I noted are due to the Velcade; they are nothing to be concerned about
- Just started tracking CD4 helper T cells which are quite low (expected given the immunosuppressants I am on, this is normal)
- Blood chemistry is all good
- Lipitor is working: Cholesterol is 180, triglycerides 141!

* Cancer markers:
- B2M is 1.3, very good!
- "M protein cannot be detected at the level of sensitivity of serum protein electrophoresis." I.E. No M-spike whatsoever!
- Immunofixation negative: "the original IgG lamba M-protein is not present." First time I've seen this in Arkansas!
- Same results in urine -- no M protein to be found anyplace!

* Bone marrow "negative for plasma cell myeloma"!
- No M component!
- Plasma cells <5%
- Normal morphology with no abnormalities
- This makes four consecutive bone marrow pulls that have all been normal!!

* MRI
- All previously described focal lesions in spine have deceased in signal intensity and size, no new lesions detected
- In the pelvis, largest focal lesion has decreased to 2cm (this was once 5cm) and other focal lesions have gone away
- No focal lesions in the shoulders any longer
- Decreased focal lesion in the left clavicle (was 1cm, now 5mm)

* Bone density is "excellent."

Sum total of all this: sustained deep remission, bones rapidly healing, precisely what they want to see!

Next steps: another course of Zometa, some testosterone (BB overruling my urologist!), Velcade inceased to 1.3mg per m2, rather than 1, but Dex decrease from 20mg to 12mg! I'll take that tradeoff!

Re: the Velcade, which GD had said "I don't think can be increased," BB said "ridiculous, I give this to little old ladies, we used to do much more than this."

Reducing the dex will help me lose weight, get better sleep, and reduce muscle wasting -- all good.

Some Q&A with BB yielded some funny moments:

* He asked me how I felt. I told him "recent bloodwork shows abormal red blood cell morphology" to which he said "so you walk down the street, grab your side and say "oh sh*t, I am experiencing abormal red blood cell morphology!??? I said 'how do you feel?'" And I had to admit, I feel good, other than the dex making me tired and hungry. He noted that the Velcade "is in the bone marrow stirring sh*t up in there, the marrow is trying to keep up, you're going to have some weird cells as a result but this will pass once you are no longer on Velcade, and it's nothing to worry about in the meantime." He suggested I stop observing myself so closely! :) Probably good advice.

* I told him I wanted to see if I could get any of my height back. He thought this would be a good idea (not just for vanity, but also to ensure spine health, avoid pinched nerves, etc.) so I will have a consult with the expert when I'm here next. He called BJ to set this up and said "Nick van Dyk is interested in extending his extremity.....(long pause)...please call a urologist." :) He then amended this, of course. :)

* We are looking for MRI complete remission as the next step. I asked him if there was anything I should be looking for as a negative indicator. He cut me off. "You will be the first to know. I'm way ahead of you. I see data updated from all my patients every Thursday and I spent hours poring through every number looking for this stuff. I'm more obsessed with your disease even than you are!"

* He gave me an unpublished article from Blood (it will be published soon) that shows the cure signature for Total Therapy 3 dating back to 2003. 55% of newly diagnosed patients. 74% of newly diagnosed low risk patients. 87.6% of newly diagnosed low-risk patients that reach CR (this is my group, thankfully). I have mentioned before that I have the Proliferation Subtype(PR) of the disease, which is an unfavorable indicator. Only 11 of 230 people with the Proliferation Subtype have low-risk disease. It is not the dominant marker for me, but it's still there. And it confers, even in a low-risk setting, a worse outcome (this is in part why he is juicing the Velcade). However, once these patients achieve complete remission, 87% remain in complete remission two years later -- and that is for all patients (including high risk). He was able to show me low-risk patients that achieved complete remission with the PR subtype -- and every since one of them remains in complete remission four years out. In other words, achieving CR overcomes the negative attributes of the PR subtype.

All in all, could not have been a better series of results.

Next steps:

* Another course of Zometa to speed along bone healing
* Velcade up to 1.3mg
* Dex down to 12mg
* Depo-testosterone administered via intramuscular injection, not a pad
* Return visit in May for another PET, full body MRI, another bone marrow, bloodwork, and probably back surgery

We then had a lovely dinner with BJ and BB's wonderful wife Kathy (the good doctor himself was not able to make it as he had dinner with a candidate -- don't know if that meant a prospective patient or a prospective doctor). The warmth and genuine concern of these people is amazing. We are so fortunate to call them friends, and so fortunate that we found this place.

This week we spent a bit of time with WB, whom I spoke with on the phone a few weeks ago at the request of BJ, and WB's lovely wife S. WB is just entering the program, was randomized to the lite arm yesterday, and begins his journey today or tomorrow with induction. I see a lot of the same questions and concerns I had a year ago in him -- and as with my new friend JH (who himself had an outstanding consult here last week, and will be monitored before entering treatment as BB felt he was in no danger at this time) I feel really good to be able to "reach back through time" and talk with people that remind me a lot of where I was at the beginning of my own journey. So WB, if you're reading this, go get em!!! And JH, you've picked the right place, for whenever you decide to proceed.

They are curing people here -- in large percentages. Make no mistake.

Be well, everyone! Graphs will start coming soon, I promise!

Return to Arkansas, part 1...or I hope God has a good sense of humor!

2010-01-26T04:32:00.001-08:00

Dateline: Little Rock.

Jill and I are in the Capitol Hotel, where we arrived on Sunday evening. It's about a year ago to the day that we came out here for testing and ultimately determined that this is where I would make my stand against Myeloma. Returning now, there's a nice almost nostalgic feeling to some of it. A few of the nurses recognize me, but many take a moment as I've got hair now. I've also put on weight, as too many have pointed out! They mean this as a complement, but I'm wary of the impact the dex continues to have on me. Nonetheless, considering how bad I looked when I had lost 40 pounds in the hospital, I'm taking their comments in the spirit they are intended: a return to health.

Yesterday they drew blood. I had arranged to have them use the portacath and so rather than go to the MIRT (the Myeloma clinic which is manned by people other than RNs, and who therefore cannot access the portacath) I scheduled the blood draw from the infusion center, which IS manned by RNs. For those who may not know, post-chemo it's hard to find a vein, and a "peripheral stick" (needle in the arm) is more of a nuisance than just accessing the port.

However, the best laid plans of mice and men (I just mistyped "best laid men of...") often go astray. They wanted to run a "clotting factor" test which would be effected by the heparin in the central line, so they had to go for the arm anyway. The first RN looked at my arm for a few minutes and couldn't find a vein. They called in support. Around this time I figured I would just demand they use the central line, which is what I found myself doing post transplant when I was just sick to death of needles. However, the support (a nurse named David) was a pro, found a vein, stuck it, and that was that.

We bumped into a new patient (BB, who I will call WB so as not to confuse him with Il Doctore) and his wife with whom I had spoken on the phone a few weeks ago. I have asked BJ, BB's faithful right-hand, to call on me as a resource to speak with potential patients and WB was one person that she thought could benefit from a conversation. I was happy to speak with him and happy to see him here, having gone through the same calculus that I did about a year ago before deciding Arkansas was the right place for me. I see a lot of me in him -- he's going through the same early-day frustrations (go from point A to point B to point C, not everybody is coordinated, lots of waiting, etc.) that I did. I marvel at how much patience this entire process has taught me!

On this note, I then met with a research nurse. Here's where things get a little confusing. I am on Velcade weekly as part of maintenance. Upon scheduling this return trip, I wanted to make sure that I would be administered Velcade on the Tuesday (today, as it happens). I had asked PinnacleCare to follow up on this. My rep at PinnacleCare spoke with a woman in scheduling here, who said that this was a planned week off from Velcade for me. That was news to me, but welcome news insofar as Velcade is responsible for that weird red blood cell morphology and my depressed white count and a little breather wouldn't be a bad idea. So long as it is on protocol -- I don't want to win a meaningless battle (red blood cell weirdness) only to lose the war (cancer returns).

The research nurse was surprised. Said there is no time off Velcade ever. Said the protocol requires weekly administration and the only time people are ever taken off it is if there is toxicity. Said she had no idea why anybody would tell me otherwise.

Okay, says I. No problem. I'm getting the portacath access tomorrow for the bone marrow. Just push some Velcade through it and we're done. Right?

Wrong. There could be contra-indications, evidently, between the conscious sedation and the Velcade, and they can't be given on the same day. I explained I'm not getting general anaesthesia -- it's a little Versed and a squirt of Propofol to keep me knocked out for ten minutes. She wasn't budging. I asked her to check. Jill pointed out that it is strange that, knowing this, they would have scheduled the bone marrow for a Tuesday. The nurse had nothing to say on that point.

Frustrating.

So we left, with the understanding that this nurse would check with BB and if it was okay, I would get my Velcade tomorrow, and if not, I would get it Wednesday. Evidently there is a +/- 1 day flexibility on this administration, which is good to know. Although I still need to get NEXT week's dose (Feb 2nd) done at Sloan Kettering in New York while there on business, which will pose a new logistical challenge and one that I am actually a little excited to undertake. One more little victory to be pulled off.

Later in the day on this point, a DIFFERENT nurse called and said there would be no Velcade because it was "too confusing" given the conscious sedation. WHAT?? I was dead asleep when they called or I'd have been more on top of it. This person said that the protocol allowed for me to skip a week. Also news.

This is the type of disorganization that might set BB off. I am confident that when I meet with him, we'll get to the bottom of it, and that worst case I'll get Velcade on Wednesday instead of today if I need it.

After the nurse consult, it was off for more tests. EKG. MRI. Bone densitometry. The last of these was the most interesting. Before talking about it, I will note that the MRI was a little briefer this time (only about an hour) and I popped an Ativan and slept through some of it. Good thing I am not claustrophobic as the last bit of it literally had my elbows and knees touching the inside of the machine, and the mask they fit over my face (think football helmet grille) was brushing my nose on one side. Tight quarters!

Anyhow, the bone densitometry was eye-opening. I saw the before and after of my vertebrae and confirmed that I have lost an inch of height. Most of this is from two vertebrae, each of which has lost about half an inch. I see the nice, square, ice-cube shaped lumbar vertebrae on the scan from a year ago, about one-and-a-half inches square, with a tiny little chip out of the upper right corner. Then there's the "after" shot where the thing is about 3/4" inch on one side tapering to about half an inch on the other and compressed all to hell.

It's a bummer. Particularly when the technician said "I can see where it was starting to go last time." You mean if they spoke better around here, they could have given me something that might have stopped it?

This really bums me out. Losing 10% of my vertebral height might seem like nothing but when I'm 5'8 to begin with, it makes a difference, and as I've remarked before all the guts are still there...they just push out more. This is mostly vanity, and my life has (hopefully) been saved so it's hard to complain, but it is discouraging to think that this could have been prevented had I taken more immediate action up-front. I'd have needed to begin treatment probably a month earlier than I did. Recall that my real sharp back pain, which was this vertebrae starting to go, happened only about a month after diagnosis, so I'm not sure how much could really have been done, but again, it's discouraging to think there wasn't enough talking going on here. I am reminded by Jill that there was a missing MRI that should have been done, as well, that would have caught this.

So let it not be said that this place is absolutely perfect.

However, it is where the irrepressible BB is saving lives, with increasing frequency. And I can't say enough about him or his people here.

I got a fair amount of work done in the afternoon and we got a bite to eat, after which we went by our old condo to say hello to the concierge. We noticed a BMW motorcycle parked in front of the restaurant there. BB's Ducati, I was reminded by Jill, doesn't start as well in the cold and it is quite cold here right now! When the concierge affirmed BB was there, we went over to say hi. He was having drinks with a colleague (another doctor in the clinic whom I had met with once) and did not see us come in.

I couldn't resist, and here's where I hope God has a good sense of humor.

Long-time readers may remember one doctor here who wears his religion and politics on his sleeve, and who allowed them to unprofessionally cross over into his clinical role with me. As BB is a scientific atheist, he has told me that he playfully mocks this other doctor (who I will call Dr. R in this entry). He has also pointed out that Dr. R is a very good man who has gone to great lengths to be helpful to BB personally, and I am sure this is the case. So this will be the last time he is the butt of a joke from my end of things (unless he crosses the line again).

Aware that BB had not seen us enter, I wrote a note for the waiter to bring to BB's table. It said "Dr. R is on the phone. He says he has seen Jesus in a potato chip. Will you take the call?"

We watched BB unfold the note and start laughing, then we went over and said hello. He's aware of the blog, which means some folks in the clinic must be reading: I LOVE YOU PEOPLE!! THANK YOU!!!!

Today there is more testing, and I'll get to the bottom of the Velcade thing sooner or later. And of course there's the hopeful news from my MRI (fewer / no lesions?) and bone marrow (no disease), etc. which I will dutifully report!

It really stinks having a cold with a suppressed immune response...

2010-01-23T05:00:00.000-08:00

I've been up all night, coughing every fifteen minutes. Not quite as bad (in fact nowhere near as bad) as when I got out of the hospital last March and was coughing every two seconds. Just enough to ensure that I can't sleep.

It's 5AM...I got about 90 minutes of sleep. Didn't take Ambien...I'm tired enough, that's not the issue. It's the coughing. I took some of that Mucinex (remember the guy that looks like Pauly from Rocky? He's partying in my lungs with his friends) and it worked Thursday night, but not last night.

I continue to remind myself that my immune system isn't fixed yet. I need 32 more months of treatment before it's pronounced ready to return to prime time. I just hope those bones heal quickly so I can dose reduce!!!

Weird blood cells...

2010-01-22T10:02:00.001-08:00

So in preparation for what's gonna be a really cool series (I hope) of graphs and charts on this blog I've been entering all my bloodwork data from Dr. GD's office. I went through PinnacleCare, my invaluable medical advocacy ally, to get these records since as I've noted before, GD's office isn't that good about getting them to me.

I saw a bunch of odd things that are probably nothing...but they do give me pause.

* A small number of atypical lymphocytes (i.e. abnormal white blood cells) in three blood draws over the last five weeks. There were none in the nine weeks before this.

* Odd red cell "morphology" over the past few weeks, including Anisocytosis (this is the technical term for the RDW figure -- meaning the variability in size is larger than one would expect) as well as Polychromsia, Pokilocytosis, Ovalocytes and Tear Drops -- I looked all these up on Wikipedia yesterday and they're all variations on abnormal red blood cells.

Are these the impact of Velcade and/or Revlimid? Probably. Are they irrelevant? Most likely. Do they make me nervous? Yes.

Anybody else have experience with these things?

All questions for BB since GD hasn't seen fit to draw my attention to them. I'm sure they are nothing but these people need to understand I want to be completely on top of things and know everything about my physiology, whether as a result of the disease or as a result of the treatment.

Meanwhile, the cold continues to make its way through my respiratory system. I'm also planning a short business trip to New York soon, which will put me there rather than in LA for a weekly Velcade administration. This will theoretically be done in the clinic of Dr. HL, who was going to be a consult of mine (dear God I almost typed "consort" my mistake!) about fourteen months ago, before I decided on BB. Yet there are logistical challenges...but I'll save that for a future report.

Have a good weekend, everybody!

When it rains, it pours. Or: The Old Grey Mare. Or: Interesting numbers on Velcade.

2010-01-20T06:17:00.001-08:00

We are getting a Old Testament-style storm in LA right now. In one sense it's good because the state needs precipitation. But it's REALLY dumping. And the ol' house is leaking. My beloved wine cellar has water all over the floor. Our den has water coming in. Our breakfast nook has a six foot by one foot strip of paint that has bubbled and is bursting. This was in an area where I paid to have the roof fixed. I'm concerned that we will have to have our dry wall torn out and replaced. We can ill afford this right now...but them's the breaks.

So the Old Grey Mare of the house ain't what she used to be. And neither is my immune system. My son got sick yesterday. Despite copious amounts of handwash, etc. I'm now sick. Readers may recall it took me three damn weeks to get over my cold last time...and that was with a healthy white count.

[ Editor's note: To be clear, while I kvetch a bit about the leaks here, my intent is to use the leaky house as a metaphor for my suboptimal immune system -- neither of them are what they used to be, hence the "Old Grey Mare" reference. Please don't think I'm being so petty as to complain about a leaky house on a blog dedicated to battling cancer, read by fellow cancer sufferers! ]

Which brings me to my next observation: yesterday's labs were good for platelets, which recovered to 148, and not so good for hemoglobin (12.0, now low) or whites (3.1, quite low). When combined with my immunglobulin (low, thank God!) it means I'm not gonna fight this illness very well.

Since I have been off revlimid for the week, and since platelets rebounded, I am beginning to believe the white and red suppression comes from Velcade (which I have stayed on). This is all part of the price to pay to eliminate the disease -- and indeed, unless one doesn't believe in maintenance therapy (and there are those that don't, though the number is less than it was even a year ago) one is likely to be on some combination of this stuff whether or not one goes for the aggressive / cure-it / Arkansas approach or a less aggressive control approach.

I'm hoping Tamiflu is enough. If not, evidently last time one of the clinicians in Arkanas (CR, for those following the blog...and the CR in this case doesn't stand for Complete Remission!) mentioned to the wife that he had something that would clear up my symptoms almost immediately. Of course this didn't occur until around day 17 of my 21 day cold. But *this* time I may give him a buzz earlier.

When I was at GD's office yesterday, once again they didn't give me lab results from a week ago. This is frustrating and I told them so. I'm building up to really letting them have it but I'll deal with that after I get back from next week's tests in Arkansas. The nurse who administers my Velcade (and she is pretty good at accessing the port, though it's more painful than the other nurse that used to do it) gave me a briefing she had gotten about a bunch of Velcade trials. She didn't understand most of it.

Anyhow, there's a trial called VISTA. It began in 2005. People treated with Melphalan and Prednisone were in one arm, people treated with these two plus Velcade were treated in another.

* 3-year overall survival was 72% for those with Velcade, 59% without.

* The median "treatment-free interval" was a whopping 16.6 months (I'm being sarcastic) with Velcade and 8.4 months without.

Translation: on Velcade and these other drugs alone, this disease kills a lot of people, and it comes back relatively quickly.

Not good enough. Hence Revlimid and Thalidomide, for one. Hence a stronger steroid, for another.

The same drugs that suppress my immune system. Hmm....

Pretty easy trade-off. Bring on the TheraFlu! :)

More phantom aches...

2010-01-13T09:32:00.000-08:00

It's thankfully fading as I type this, but I awoke this morning with a dull pain (very minor, but I am attuned to these things) in my back. The ache is still there if I really focus on it -- it's about two inches to the left of my spine. I recall there being pains there during therapy, though I don't recall if it was the lesion or the vertebropasty that caused it.

Based on my conversation with GD yesterday, it seems unlikely that this is a recurrence. I remain immunofixation negative (although another test was done yesterday). And as GD points out, with recurrence, the pain generally worsens rather than goes away.

I am hopeful this can be dismissed with an MRI. I would prefer not to need to do another PET and God knows I don't want BB digging around with a Fine Needle Aspiration of these spots, which is probably where he will go with it. But if that's what is required, then I will submit to it.

More on this and other things of note as they develop.

Another day in GD's chair...

2010-01-12T15:34:00.001-08:00

Hello folks.

Got my Velcade and a brief visit with GD today. Again, no review of my labs with me and I didn't get a copy. I will make an issue of this next time I see him -- today, he had laryngitis and between that and my rough day at the office I didn't feel like dealing with it.

I managed to see enough to note the following:

* White count is low at 3.7, but not alarmingly low.

* Hemoglobin is 12.7, again just a little low, but not alarmingly so.

* Platelets are back up to 96 after dipping to 89 last week.

I start my week off Revlimid today so these numbers should all have a chance to recover somewhat for next week. I noted to GD that I might discuss dose reduction with BB when I see him week after next, while also commenting that I know BB was considering INCREASING rather than decreasing my Velcade. I don't want to screw up the results of the therapy, since it has been successful. But I'd really like my counts a little higher if that's possible.

I also saw that RDW, that strange marker that I was so happy to see in the normal range, remains high at 14.6. Not crazy high, but high. I was going to ask GD about it...but then he didn't give me any time for questions and I know he'd probably just wave me off anyway. I'll ask BB about it instead.

We discussed my shoulder, which hasn't hurt in two weeks. GD did not think it was recurrence, since when recurrence happens the pain usually is persistent and doesn't go away, or if it does it comes back more sharply pretty quickly. He also didn't seem to think it would be from healing of the bones. The MRI should tell all -- and if it doesn't, I'm sure Bart will order a PET that I'd prefer not to need, all things being equal. We'll see what the MRI says. Hopefully the lesion is healed and that will take care of it. Then we can chalk it up to being over 40 and call it a day.

A number of people with whom I've spoken over the past weeks are headed to Arkansas for testing and potential treatment. If they are reading this, good luck and I hope to see you when I'm there!

Immunofixation negative still...but what about the shoulder?

2010-01-04T12:40:00.000-08:00

Okay, so I managed to PRY out of the people at GD's office that my test as of 12/22 was still immunofixation negative, so that's good.

So what's with the faint dull pain in the shoulder? Could this be bone healing? God I hope so! We'll see how things go.

I head back there tomorrow (GD's office) for my weekly infusion. The nice nurse Denise who has gotten good at port access and hasn't hurt me is moving on, unfortunately. So I am now in the hands of her peers. Hopefully they are good at not inflicting pain!! :)

A pain in the shoulder...

2010-01-04T03:10:00.000-08:00

Well, it's a sleepless night, not due to the dex.

I played an atypically bad round of golf on my last day off for the holidays. I made the mistake of taking a few lessons from a golf pro and he ruined about three years of work. I'm not happy. If I spent as much time, money and effort at ANYTHING as I do at golf, I would be so good at whatever activity that is by now...

More troubling, though, is the dull pain in my left shoulder. I recall that it was a sharp pain in my left shoulder that was my first sign that anything was wrong with me, back in October of 2008. There is something going on on the shoulder...nothing all that painful but there's something there, and it doesn't feel like muscle. It feels like bone.

Add to this that I'm still in limbo as to the last immunofixation test and it makes for a restless evening.

I'm (almost) certain that I'm still at zero M protein, and that I'm still in complete remission, and that whatever discomfort I feel is simply because the bone hasn't healed 100% yet. And yet it's a reminder that all is still not completely well.

I hope it goes away -- because if it doesn't, I know that I'll be in for fine needle aspirations and other PET down in Arkansas, even if it's just to prove a point that there's nothing there. The MRI might show that it's gone (in which case I don't know what I'm feeling) but if it doesn't, it won't show avidity in the lesion (i.e. are there cancer cells "doing the Watusi" as BJ once said). We need another PET for that.

Anyhow, in a few hours when they open, I will call GD's office and tell him I want my GD test results, and we'll take it from there.

In other news, I spoke this evening with a nice young woman from South Carolina whose father was recently diagnosed. I'm trying to toe the line between being an impartial advisor/resource and being an evangelist for Arkansas, but the most important thing is this is another example of the usefulness of this blog and I'm so appreciative of the opportunity to talk with newly diagnosed patients to help them navigate their choices.

Happy New Year to you all...I will get to those lab results this week as they are pretty interesting.

Happy New Year's Eve

2009-12-31T17:13:00.000-08:00

I'm dashing to prepare what has turned into a seven course meal (five courses for six people plus two additional dishes for one in our party who is allergic to shellfish). What have I gotten myself into!!! :)

So this will be quicker than I'd like.

It's been an extraordinary year. One marked by fear, despair, and pain...but also hope, faith, and love.

I have been so moved to have seen this community of support grow...I've mentioned this before but you each mean a lot to me.

I'm incredibly lucky that I had the time to research the disease, find BB, and put my trust in him.

And I look forward to a new year that begins with no disease, and ends the same way, as I march towards MRI remission and, hopefully, a formal statement of "you're cured, Nick."

I'm assembling some interesting charts on bloodwork that I'm resolving to publish here in the New Year. That's one good resolution that I think I can keep! We'll see what others pop up. But for now, it's time to eat a lot of food, drink a lot of wine, and celebrate the end of our Anno Horribilis.

Blood counts...

2009-12-29T23:46:00.001-08:00

So I had my weekly infusion appointment. The nice nurse (who is good at accessing the port without pain) informed me she is leaving the office, which is a bummer. I'm sure they have other competent people but I have a good relationship worked out with this woman: she doesn't hurt me, and I don't scream bloody murder. Hopefully that can carry over to whomever is next responsible for me.

One thing that drives me grazy about Dr. GD's office is they won't give me my damn labs. It's MY BLOOD for Pete's sake. I'm entitled to it, and I also know how to interpret it better than anybody there except the doctors. But for example, they didn't have last week's labs in my file yet, because "the doctor hasn't reviewed them." This, I feel, is bullsh*t.

What they DID have was today's bloodwork, which I wasn't crazy about. White count is 3.7, which is getting low. Hemoglobin is 13.4, which is okay but not as high as I'd like. Platelets are at 108, which isn't great since they'll be going down for another two weeks while I"m on Revlimid and they'll probably get well below 100 this time. Plus that RDW marker, which I've come to associate with Myeloma since it was screwy when I had it, is back up to 14.3 -- just a little outside the normal range, which I don't like.

I would have liked to see the immunofixation results to assuage my concerns. But they weren't available. GRRRR....

A note on hair regrowth...

2009-12-29T09:27:00.001-08:00

I realize this topic doesn't have the urgency of some past posts, but I'm in a position to post some interesting observations, at least!

* I was told by my original hematologist that hair loss would occur after the high-dose Melphalan administered during the transplants. In reality, my hair loss occured during induction (in fairness to my original oncologist, he didn't anticipate Adriamycin being included in the induction protocol) and I started REGROWING hair during the transplants, particularly on the face. Regular readers may recall my colander-helmet photo taken after the second transplant.

* I was told that it would take about two months before hair started regrowing; this was basically as expected. It took probably another month before I had a decent covering of hair, and two months before I had a full head of hair.

* I was told that hair can grow back in a different texture and different color post-transplant, but that if one's own cells were used, the variability was much less than with other cells. Interestingly, mine did grow back in a different texture (much more fine, initially) and different color (a dusty medium brown rather than dark brown). However, this changed over time, particularly the color. I'm now three months post-commencement of hair regrowth (i.e. five months from the last treatment of chemo...wow!!!!) and my hair is the same color that it was when this whole mess started. Texture, however, is another thing. It isn't as fine as it was, it's a bit richer (not yet how it used to be, but on its way). But I have a patch about two inches square that is very wavy, and I have another patch that grows forward where all around it grows backwards. This makes for hair that doesn't yield to styling. My solution thus far is to keep it quite short...however pulling off that look requires me to lose weight which, given my Dex schedule, is rather challenging. Hopefully I can accomplish something, though! I've had to abandon physical therapy due to the work schedule, but I really need to try to get back there at least once a week, both for weight loss and for maintaining muscle.

* My hair stylist points out that hair cells retain whatever chemicals are in the body for a long time, which makes perfect sense -- we've probably all heard about drug-testing that can be done on a strand of hair that retains literally years of memory. So it's going to take some time for my hair cells to get done regurgitating all the drugs that have been in my system.

So, like I said, not exactly gripping but potentially interesting for somebody about to face their own hair loss situation.

In other news, everything is pretty darn good. I slept poorly last night which is a bad thing since today is a Dex day and that means there could be shakiness ahead. I'm going to continue to follow the suggestion of taking it right before bed this evening.

I'll have a final 2009 post later this week. Hope you are all doing well!

Delayed update!

2009-12-23T09:35:00.000-08:00

Happy holidays to all of you -- I'm sorry to take so long with this but I am happy to report that I am very busy at work! :)

Quick highlights:

* I got rid of my cold on the 21st day. That's a LONG time to have a cold. Longer than I ever want to have one. I'm looking askance at my bottle of Revlimid right now...but in the grand scheme of things, I'd rather be alive with a cold than dying from cancer, so once again, not much to complain about.

* I am still in complete remission. The visit to Arkansas in four weeks will hopefully indicate improvement in the MRI as that is really the last piece before BB will be relatively confident in saying that I am cured.

* Arkansas just presented its most recent data two weeks ago at the ASH conference in New Orleans. Of those newly-diagnosed patients who reach complete remission, NINETY PERCENT remain in complete remission FIVE YEARS OUT. The plateau in the recurrence curve is reached by then. That means a "cure signature" of about 90% -- pretty remarkable. I'm on the track and will hopefully stay there.

In light of this, it occurs to me that what is most important now is not so much the data coming out of Arkansas -- but the data elsewhere. I do believe Arkansas can cure the majority of newly diagnosed Myeloma patients. The issue is now: what can be accomplished without going through all that? We don't yet fully understand just how powerful Velcade and its derivatives are. Hopefully everyone with this disease will enjoy a very, very long remission!

Happy holidays once again, and I will be posting more in a few days!

Addendum...

2009-12-11T10:35:00.000-08:00

Still need to take Ambien on Thursday nights, evidently! Got about four hours of sleep last night...not good. So next week, continuing to perfect the formula: dex before bed on Tuesday, Ambien (or Tylenol PM) on Wed and Thursday nights. Should do the trick!

Still can't shake this damn cold...two weeks today and counting. But it isn't worsening and appears to be on its way out, just taking forever!

A gold star for Tim's wife!!!!!

2009-12-10T17:12:00.000-08:00

So I took the Dex before bed on Tuesday night and slept like a rock -- for about six hours, anyhow. Then I woke up, ready for bear! Made it through Wednesday with high energy, took an Ambien before I went to bed Wednesday night (no Tylenol PM on hand), got another six hours. By far the best I've slept since I've been on Dex in maintenance.

Taking Dex before bed is a winning strategy! Thanks Tim's Wife! :)

Still fighting off this cold...will be two weeks with it tomorrow but it is on the way out. The lingering cough is a real pain, though!

Platelets were below 100 on Tuesday -- 98 to be precise. This required the nurse to check with the doctor before administering the Velcade. She asked me if Arkansas would have a problem administering the Velcade. I told them Arkansas would have a problem NOT administering the Velcade, and would give it to me if my platelets were at EIGHT, much less 98! I checked with Arkansas to see if I should eliminate all the aspirin. I'm on one a day, still. I don't know the connection between deep vein thrombosis, plateles and aspirin, but it seems to me if the aspirin is to thin the blood, the low platelets probably mean I can discontinue it. One less pill would be a good thing!

I'm getting sick and tired of being sick and tired...

2009-12-07T11:03:00.001-08:00

Day 11 of this cold, which remains in my chest and sinuses. No real change -- it doesn't get worse, but it doesn't get better. I don't have a fever, there's no sign of infection or anything like that -- but I don't have the immune system needed to clobber it.

I'm getting very tired of coughing all the time. I remember when I had just left the hospital earlier this year, I was literally coughing about 200 times a day. I remember starting to go stir crazy from it. I'm not there, but I'm probably at 75 times a day and it's very irritating.

I could tell last night that I was going to have trouble sleeping so I took an Ambien and I got a good six+ hours. I don't want to become reliant on the stuff but I had to get rest to break the cycle.

The plan, based on feedback from some of you here and some other folks as well, is to use Tylenol PM tomorrow night and see what that does. I may also, depending on whether or not the clinic approves this, take the dex at night instead of in the morning, with the hope that I will be wired on Wednesday morning and that by Wednesday night it will be hopfully on its way down. If I can get by with 1-2 nights a week of Tylenol PM, that would be great. However I don't want to screw up the cadence of administration -- the dex, Revlimid and Velcade synergies are important so I'm going to clear this concept with the clinic.

Have a good week, folks! At some point soon, I'm going to post all my blood numbers over time so that we can look at the impact the therapy has had on everything. I'm sure you will be on the edge of your seat waiting for that! :P

Note to self...zzzzzz....must....take....Ambien....

2009-12-03T14:12:00.000-08:00

Ugh.

Tuesday night four hours sleep with Ambien.

Wednesday night forgot to take Ambien, slept for 90 minutes.

Cold is lingering -- no surprise given lack of sleep.

MUST REMEMBER TO TAKE AMBIEN ON TUESDAYS *AND* WEDNESDAYS!!