IVIG to the rescue?

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...

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!

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!

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.

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...

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)

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

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!

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!

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...

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...

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.

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...

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...

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?

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...

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

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...

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...

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!

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...

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!!!!!

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...

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....

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!!

My dreams of being Barry Bonds are over...

Damn.

Got the news from the pee-pee doctor today. My testosterone is around 400. The end of normal is 250. I'm squarely in the normal range. All the other markers he tested for are likewise normal. I don't have any hormonal issues. Evidently there is no muscle-saving benefit from juicing me once my testosterone is already normal (I don't think I agree with this, given the success of certain baseball players, but whatever) and he is trepidatious about side effects, so he doesn't want to do anything.

Hmm.

Well...I could go anywhere with a host of jokes but at this point I'll keep my mouth shut.

Other bloodwork came back fine today. White count is up, mid 7s, in response to the cold I've got. Nice to see my marrow can still make the good guys. All other counts basically normal, with the continued situation of having more young white blood cells than old ones. That will be the case until I'm off Velcade.

Rotten Dex day. Throat is killing me. Wide awake...hoping the Ambien will work tonight!

Quick update...still here...

Several of you have been so kind as to let me know that you were interested in my progress, since even a chest cold can be a pretty spooky thing given a rebuilt immune system.

I'm not over it, but it hasn't worsened, really. I am on double Tamiflu for the next week or so, but otherwise steady as she goes. I spent most of the weekend doing nothing, just trying to get some rest. So basically, not a whole lot different that would be the case with a normal cold.

In the past, when I felt a cold coming on, I would take Airborne (which has been debunked, but hey, I'm all for placebo effect as long as it works...for colds, anynow, not for cancer!) and then if needed, I would take the usual over-the-counter stuff. TheraFlu and, if a cough was involved, Mucinex (the one with the TV commercials featuring the green blob in the wife-beater looking like Paulie from the Rocky movies).




I wouldn't want to spend all weekend in the company of either of them. But I digress...

Anyhow, at some point I will ask BB if I should just resume taking all the normal cold stuff when I get a cold. For now, I actually want to know exactly what symptoms I have and how they change over time. It's valuable information. That Tamiflu is also 100x stronger than anything over-the-counter, so it's a better option anyhow, although it doesn't contain anything for the symptoms, only for the root cause.

This also brings up another issue that is worth highlighting as pertains insurance. My company is pretty stingy on the Tamiflu as it doesn't accept the notion of using it prophylactically. They will only approve a certain amount for am immunocompromised person during a community outbreak. In the case of our current environment, H1N1 constitutes a community outbreak so I am allowed a batch of pills. However I now need to double-up. In short, I have to dig into my prophylactic stash to treat active illness. I am hoping that the insurance folks will grant another refill to acknowledge this situation -- I've placed the call and we'll see how that works out.

I'm back to the doctor tomorrow for the weekly roundup. If they are keeping to their new cadence, this will be the week that they run the more extensive tests. IgG will certainly be up in response to the cold. Should be interesting. Hopefully I will also have info from the mojo doctor as well!

Taking the new immune system out for a spin...

Hello everyone! I hope that those of you in the States had a great Thanksgiving, and those of you everywhere are enjoying your weekend.

I, obviously, have much to be thankful for. Jill and I spend each Thanksgiving with two other families with whom we are very close and whom we are so fortunate to be friends with. This is, I think, our fifteenth year doing it. We've gotten better at cooking (the turkey is downright perfect now) and there are a lot more kids now than when we started!

I honestly don't recall too much about last year's Thanksgiving, but I suspect it was a little toned down. I suspect I was thankful, in a literal sense, that I had been diagnosed as early as I had, but there probably wasn't a lot of joy in the room. This year was a different story. I'm thankful -- with a renewed sense of awareness -- for my health. I'm thankful I was diagnosed early, that I had time for research, that my particular disease was highly responsive to therapy, that I made it through aggressive therapy more or less unscathed, and that I'm in complete remission. I'm thankful for my family and friends, for their support and love. And I am thankful to each of you that has followed my ups and downs and shared in my journey. I don't think you realize how important you have been to my fight. This blog has provided a quiet sense of purpose throughout and a means of focusing on something other than the mechanics of yet another trip to the infusion center. Thank you all, again, very much!

So...I have not had a cold since I recovered from the hospital spell back in March with the attendant pneumonia. A couple of false starts headed off by Tamiflu, but nothing that turned into anything more than a sore throat for a few hours, quickly remedied by the antiviral meds.

That ended yesterday.

I started noticing some chest congestion last night, and it is in full force now. Normally, I wouldn't give it a second thought. But I am on Immune System 3.0 here (actually probably several other revisions along the way) and thus there's a level of import associated with my response to this cold that I normally wouldn't encounter with any old case of the sniffles. How quickly will my intentionally-suppressed immune system mount a recovery? And as my immunoglobulin factory kicks in, will the monoclonal protein start being replicated again?

I can almost feel the Revlimid getting in the way of my immune system...and I can almost feel monoclonal IgG cackling and rubbing its hands together. If push comes to shove, I know the first is really happening, and the second isn't. And there's another shot of Velcade coming up in three days to make sure that's the case.

Will report back as things develop. We'll see how long it takes me to get rid of this...the wife was hit with it for about a week. I remember Kathy Giusti of the MMRF telling me that he rebuilt immune system resulted in her getting every cold that passed through her office. But others have told me that they very rarely get sick any longer. Like other aspects of this disease, it sounds like everybody's experience is different! It should be interesting, if a little nerve-wracking, to see how this plays out...

Blood counts good!

I love the honesty of this blog as I think it is one of its most valuable attributes, as I have said in the past.

And I have been willing to be very self-effacing, as needed, to retain this honesty. Like in the last post!

However, there's nothing saying I can't top off the blog with non-embarrassing posts to space it out. So here goes today's update. :)

After a week of recovery from Revlimid, I start cycle three tonight.

All the counts look good, with the exception of the mix of white blood cells. I have a lot of young cells, and not a lot of mature cells. This isn't a problem at all from a functionality standpoint. It's simply an abnormality that is easily explained by Velcade. What I described as the Logan's Run effect.

White count is at 6.6. Don't know how much of this is a response to the colds in my house, versus a normal recovery, but it is squarely in the normal range. I also have to say, TamiFlu may very well be the cure for the common cold. I've had three sore throats in the past two months. When that happens, I double up on TamiFlu one day, and return to daily doses the next day. In each case, by the next morning, the sore throat is gone.

Anyhow, white count is good. Platelets are at 136. Not robust, but in a decent range. They will probably continue to go up over the next few days, although the Revlimid will begin to depress them again. Not a problem -- they seem to bop around in the 100 to 150 range.

Hemoglobin is a very normal 14.8! Again, it will probably start to edge down as the Revlimid kicks in, but it never really falls below 13 and change, so I'm in normal mode. N.B., to those other MM travelers that follow along, when I talk about red blood counts I always use Hemoglobin (as opposed to actual red cell counts, hematocrit or other measures) since this is what Arkansas tracks to determine the need for a unit of blood (below 10 and BB is thinking about it, below 9 and you are on your back with a bag or two being put into you).

Then there's that kooky RDW figure...the one that measures variability in red blood cell width. This was always high during cancer therapy, and even a bit afterwards (it is also a hallmark of anemia). But it has been consistently healthy, now at 12.7, and pretty steady for the past two months. Good stuff!

All looks good. Happy Thanksgiving, friends!!

P.S. I promised I wouldn't politicize this blog, but the impending healthcare legislation is SO HORRIBLE that I have to urge you all to oppose it. It will not work as it is stated, it will definitively decrease the quality of care in this country, and for those of us with Myeloma (or those who are diagnosed from here on out) it may very well result in BB's protocol not being covered. There are good people that follow this blog in the UK, New Zealand, and elsewhere who are not allowed to receive Velcade because they are notionally responding (or could respond) to other therapy...even if that means partial response / stable disease. Medicare doesn't cover Velcade. BB's clinic covers people that are not covered by the government...and does so because the current system allows them to make enough money to do so.

We can address things like coverage for children under 18, and mandating that coverage cannot be denied for pre-existing conditions, without completely destroying the system that provides us with the best access to the best quality care in the world. There's a reason the vast majority of Myeloma research is done in the US!

Plus, consider this: when Medicare was launched, the government estimated 1990 costs would be $10 billion. Actually 1990 costs? TWO HUNDRED AND NINETY BILLION. If I was off by a factor of 29 in a critical estimate, I'd be fired. No such redress occurs in government.

Okay...soapbox mode off. I won't bring it up again! :) I am more than happy to discuss / debate this with any of you in a friendly fashion. However I would ask that if you want to do so, you do it via email to artisannvandyk at earthlink dot net, rather than in responses here, as I really don't want to turn this blog into a political forum...I just felt the need to vent on this issue since I've been thinking about it and since the five people in the doctor's office getting infused with me today were all opposed to it and scared to death about its implications for them.

Dr. Evil stole my mojo, continued

Hello folks! PG-13 rated post here.

I had a visit today with Dr. SS, a urologist, about the testosterone situation. Without belaboring things too much, I can report that I successfully avoided another digital rectal exam, and that I've now seen ultrasounds of my privates. Interesting.

Long story short:

* Lack of mojo is not good. How can I put this delicately...the factory is still making widgets, and if none of the widgets ever get packed up and shipped out of the warehouse, the warehouse can get clogged up pretty bad. Not good! Shipments need to occur with greater frequency.

* Dex is a culprit, as is Revlimid. Basically a double-whammy. I have a textbook case of lost mojo, in the words of Dr. SS.

* I have normal blood flow, good kidneys, bladder, etc. so there's nothing physiologically wrong with anything.

* I have a battery of blood tests tomorrow to check for different things, and assuming they are normal, I will be treated probably with a testosterone patch, rather than injections. Basically, Barry Bonds here I come. This should help with mojo, and also help arrest the muscle wasting effects of Dex as well.

More news as events merit. Happy Thanksgiving to you all!!

Good news from today's doctor visit, returning to work, and other stories

Hello folks!

First of all, thank you for the emails, comments and other communiques about my return to work. Day two is over now, and it's been great so far. Of course, frankly, if I wasn't basking in abundant good will from my other "cast members" (as we call them) on my first day back after being out sick for eight months, it would be a pretty bad harbinger. So I expected yesterday to be a really good day -- and it was. :) But I am very excited to be intellectually engaged in something other than hematology, and it feels great to be plugged back in. I got a nice note from our CEO, and everybody else has been warm and fantastic.

I had my infusion appointment and visit with Dr. GD today. I like GD a lot, and I appreciate that he is following BB's instructions to the letter, essentially, minus a little push back on lab frequency. But he is short, not to say taciturn. I feel rushed with him, and there is little effort to answer questions or provide labs, etc. Arkansas is much better about this. Fortunately, I know what to look for. He would have just said "everything looks good, you're doing great" and sped out of the room. But thankfully I was able to briefly flip through and see the all important note:

IMMUNIFIXATION TEST: NORMAL PROFILE. NO MONOCLONAL PROTEIN DETECTED.

This, obviously, is

AWESOME!!!!!!!

And just how awesome? Well, as the kids are saying, let me "drop some knowledge on you".

Here's the latest published data from Arkansas. The "tag line" at the top of the page speaks for itself.



Consider that nobody else believes it's even curable...and yet cure is now anticipated for the majority of low-risk patients!!!

Look at that red line. Over 90% of patients that achieve complete remission remain in complete remission more than four years out. I told this to to GD today and he shook his head and muttered "that's amazing" under his breath. Before he basically ran out of the room to see another patient, that is. :)

I am in complete remission. Not all low-risk patients achieve it, as you may recall. But about 60% do, and I'm in that group, which means I now have the highest degree of likelihood of long-term remission. And as we know, long-term remission equals cure in the Arkansas protocol.

I am sitting pretty on that red line, and I'm gonna stick with Velcade, Revlimid and Dex for as long as I need to. One thing I'll consider is that Revlimid is used out here by Dr. RV, one of the folks with whom I would have consulted early on but for the fact that I had already decided what to do, for as long as the patient can tolerate it. I might ask BB what he currently thinks is best for people. He uses more Velcade now than he used to do...and the results in that chart reflect less Velcade than what I will be on. So if anything, I hope to do even better. I am also mindful that I have the nasty subtype of the disease, which gives me a little less confidence than would otherwise be the case. I will ask BB if he wants to increase the Velcade by 30%, as he once mentioned, with this in mind. We want to see those bones heal up, too.

But basically, I'm optimistic that I'm cured. And I'm so thankful, again, for the early diagnosis, and the time to do research, which led me to BB and the belief that for the newly diagnosed, low-risk patient, there is simply no better alternative.

Now, as to the less important data from the doctor's meeting. It looks like platelets bounce around between 110 and 150 depending on where I am in the Revlimid cycle. White count bounces around between 4.0 and 6.0, which is a little low but that's okay. Red blood count bounces around between 13.5 and 14.5, which is again slightly on the low side but still good. All my blood chemistry is normal, except for phosphorus, which is a hair low. I asked the nurse if I should eat a road flare. She said probably not.

Every time I speak of how well I'm doing, I think about my friends with the disease -- both those I've met in Arkansas and elsewhere, and those I've met from around the world through this blog -- that have not fared as well. For these people, I once again offer my prayers and profound respect, and also the hope that regardless of where we all are in our treatment, there has never been more hope for Myeloma patients than there now is. Carfilzomib, Pomalidomide, and new trials offer exciting new therapies that have been shown to be effective where other treatments have failed, and which have fewer side effects than current therapy. Do not lose hope, people. Do not give in to this disease. I know it is easier said than done. But I also know that steeling yourself to be relentlessly positive in the face of this disease is the best ingredient you can bring to your treatment.

Love to you all,

Nick

Reflections on the past year

It was a wonderful week in northern California, visiting family and friends and eating a lot of good food and getting those last few lazy days in before I return to work...in less than 12 hours! :O

I was thinking of what to post to mark the one-year point, other than my brief observation on the actual date. I was speaking with a company that is organizing a patient outreach program for Takeda Oncology (formerly Millenium Pharmaceuticals), the manufacturer of Velcade. I was going to be part of this program but the schedule just didn't work out. I did, however, prepare a speech that I would have used were I asked to speak to patient, clinicians, etc. about Myeloma. And it occurs to me that this little speech covers a lot of ground in the same way that a full reflection on the last year would...in terms of what I've learned, for example.

So without further ado, here it is:



My name is Nick, and I like to think that I used to have Multiple Myeloma.

As I stand here now, I feel pretty darn good. Of course I still take three types of anti-cancer medicine, plus supportive medicine for the side-effects of the cancer therapy, and there’s the issue of this port I’ve had surgically installed in the left side of my chest that is used to draw blood and administer IV medication every week. So I can’t say things are completely back to normal. But the chief inconvenience of Multiple Myeloma – death – is a lot more inconvenient than what I have to deal with. So who am I to complain, right?

Like most, I’ve known people through my life that have died from cancer, including my father. Along with everybody else born relatively early in the last century, he wasn’t aware of the dangers of smoking until he’d been a cigarette smoker for twenty years or more. He quit cigarettes about twenty years before he was diagnosed with cancer – even though he clung to these cheap and smelly Dutch cigars that he used to somehow enjoy. Nonetheless, when he was diagnosed, and when he died a few months later, I still associated his disease with a lifestyle choice. I’ve never been a smoker. I drink in moderation. I use sunscreen. I eat reasonably well, although I’m not one of those people that obsesses about the anti-cancer properties (or lack thereof) of every item in the grocery store. I figured I was making the right decisions.

Eventually, I came to know people that were diagnosed despite leading healthy lifestyles. George Carlin once joked that he was going to write a book called “eat right, exercise, and die anyway.” Prophetic words, I suppose. But even after meeting people who had surprise cancer diagnoses affect them, I still didn’t think it would be something that would happen to me. Of course we never do, right?

When I was diagnosed, I was a 40-year old executive with The Walt Disney Company, with a wife and two young children. I kept myself very busy at work, and with some hobbies including golfing (poorly, I should say) and performing in a band in my not-so-copious spare time. In retrospect, the stress of managing my job while trying to tour the country with this band is what I think tweaked my immune system and resulted in this disease. But I was feeling good – things were clicking along pretty well in my career and being sick – seriously sick – was the farthest thing from my mind.

I didn’t really have any symptoms that I recognized as such. One acronym that some in the medical community use is CRAB – elevated calcium, renal failure, anemia and bone problems. I certainly wasn’t aware that I had these things, if indeed I had them. The only thing I noticed was one day while golfing, my shoulder hurt. Enough so that I had to stop playing. I assumed that I had either pulled a muscle or that I was just starting to feel the impact of turning 40. I thought a trip to a masseuse or at worst an orthopedist and some physical therapy would be enough.

I should add that while my father didn’t pass along his predilection for nasty smelling Dutch cigars to me, he did pass along rotten genetics for cholesterol. For which, as it turns out, I’m extremely thankful. I’d run out of my medicine, a type of drug called a statin which I’d been taking for three years or so. Cholesterol is secreted and processed by the liver, and statins interfere with that chemical process. This is great for the heart, but can be bad for the liver – it’s a little like crop rotation for one’s organs! So as part of the care protocol with statins, I needed to get a blood test to check liver numbers every once in a while to ensure my liver isn’t too irritated. But I HATE having my blood drawn. So I avoided this appointment as long as I could. If you’d told me, frankly, that I’d be getting a disease that would necessitate daily blood draws for eight months, I’d probably have jumped out a tall window.

Anyhow, my primary care doctor told me there was no renewal of my statin prescription without blood work – I hadn’t done any in eighteen months. So I came in, had the blood drawn, and that was that. Or so I thought.

My primary care physician is an awesome doctor – totally overqualified to do a simple blood draw as he’s really an infectious disease specialist these days. And this is one of those things that people that carp about healthcare costs always say can be done by any old lab cheaper than by a doctor. Well fortunately, I went to an overqualified expensive doctor instead of a lab technician. And he noticed that my total protein was too high. He called me back in for another test – at the time he didn’t tell me what he suspected because he is VERY much an anti-alarmist. But when the protein came back high a second time, he told me it was probably one of two things. He said it could be a condition called MGUS, or it could be something, which he thought was very unlikely by the way, called Multiple Myeloma. He explained, very calmly, that this was a “malignancy of the blood.” That’s a little like saying a severed limb is a malignancy of the skin. But anyhow…

Long story short, he referred me to a hematologist, who told me how unlikely it was that it was Multiple Myeloma since I had no other symptoms, and who went on to say that Myeloma was no big deal. I have a very close friend who is a doctor, and in contrast to my primary care physician, my friend was panicked for me. He said people die of Myeloma within five years. I now know this is not the full story – the full story has a lot more hope. But I mentioned this five-year window to my hematologist and he laughed it off.

That was, until two days later, when my bone marrow biopsy came back with 70% plasma cells – meaning the disease was well advanced and it wouldn’t be long before I had other symptoms. All of a sudden, my hematologist was a lot less cavalier about the prognosis for a Myeloma patient than he’d been two days before, when he acted like my friend was crazy.

I’m thankful that this hematologist was very honest with me – he told me that there are a variety of treatment approaches, and he explained that I should seek the opinions of people across the spectrum, including people whose concept of treatment different pretty starkly from his own. He told me that because I was young, it meant my system wasn’t particularly good at fighting off this disease. He expected it would advance quickly, but he thought I might have six months before I needed to begin treatment. This gave me time to research the situation.

And to keep my sanity, I threw myself into researching it. I was going to manage my medical condition to the extent possible, and “fool” myself into thinking this was just like any other project. I learned everything I could about my disease – enough where I could probably pass myself off as a hematologist at a Myeloma conference. I found the prominent doctors from each school of thought, had four in-person consults, two other detailed phone consults, and had more scheduled when I decided that I’d learned what I needed to learn.

What I learned, ultimately, is something that few doctors really want to come out and say cleary. But I’ll synthesize it for you: at the fifty thousand foot level, the first choice you and your medical team need to make is whether or not you want to control the disease, or attempt to eradicate it. Your choice depends on a number of things, including your age at diagnosis and your general health. People are living longer and longer with this condition, and while we aren’t at the level of treating it like a chronic disease, it’s no longer the imminent death sentence it once was. If one is in one’s late 70s when one is diagnosed, there’s a reasonable chance of living long enough to die of something other than Myeloma. But at 40 years old, I wasn’t prepared to go that route.

At any rate, I did learn that it’s almost impossible to find two physicians that agree on precisely how to treat the disease. The only thing that they agree upon, almost universally, is to avoid looking at the Internet for Myeloma information. It’s all extremely bleak, because it is backward-looking in large part. Now I couldn’t completely force myself to avoid it, but I did take it with a grain of salt. I used the Internet to help me create a “decision tree” of treatment alternatives, and I used the first couple of consults to learn about the disease, and the rest of them to help hone my decision tree.

Ultimately, my decision was to go for the most aggressive treatment possible with the intent of eradicating the disease. Many people feel it’s not possible to do that. My doctor disagrees – violently, actually – with those who say it can’t be done. I’m told there are raucous exchanges, as these things go, at hematology conferences on this topic. And knowing my doctor as I do, I’m sure he gives as good as he gets.

I started treatment none too soon. I went from Stage I disease at diagnosis to the point where I had four broken vertebrae in my back, early stage renal failure, high calcium numbers and early signs of anemia. The CRAB showed up, all right, and it was beating me up pretty bad!

I spent about six months in active therapy, which included four courses of chemotherapy with multiple agents, two consecutive stem cell transplants, and additional therapy along the way. I achieved what my doctor calls “very profound complete remission” in the last month of this primary therapy. Of course the trick is staying in remission – and for that I’m on this three-drug cocktail for the next three years, with the goal of making my system so unfriendly for Myeloma that the last of the little buggers gives up the ghost.

So right now, I’m exactly where I hoped to be. I achieved the best outcome from therapy that can be measured at this point, and the side effects of treatment weren’t really that big a deal. I mean I suppose I could complain about the exhaustion, the hair loss, and whathaveyou but part of what I brought to this battle was a “damn the torpedoes, full speed ahead” positivity. Every time I did something that hurt or made me feel sick, I envisioned that it was killing a hell of a lot more cancer cells than it was healthy ones. I could take it better than the cancer could. So every injection was a “take that, cancer!” moment. I didn’t stress about every little thing that could go wrong, every little side effect, etc. I had exhaustively researched the potential serious impacts of the medications I would be receiving – and I questioned my doctor (and others) very directly about these potential problems. But once those questions were answered, I didn’t really look back. And I never really wavered in this approach, other than a brief period of concern when I hadn’t achieved complete remission after my second transplant. But again, it was part of the program – I was still seeing the impact of the first transplant long after my second transplant was done.

Now, my life is fundamentally the same as it was before I got sick, with the exception of these weekly doctor’s visits and the pills I need to take. But again, I don’t dwell on that. It’s simply something that has to be done. I didn’t ask for this diagnosis, and I’ve had to make some concessions to the disease, but treating these things as anything other than matter-of-fact things that just have to be dealt with, in my opinion, yields too much to the cancer. I got sick. Very sick. I chose a path to get better, and that path involves some things that healthy people don’t have to do. Oh well. It is what it is. I’m not going to let it dictate my life.

Consequently, I don’t feel like I’m living with Multiple Myeloma. I’m living without it, and taking steps to hopefully keep it away forever.

And here, I must note, that I’m one of the lucky ones. There are 15% of patients who don’t respond well to any kind of current therapy, and there are more who are allergic to one or more of the medications that I am on to be in maintenance. There are others who didn’t have the good fortune to be diagnosed as I did – most people learn they have this disease when they go to the ER with a sudden broken bone. And the on-staff hematologist probably starts them on whatever protocol they believe is the right thing to do, even though they may not even be a Myeloma specialist. And if they’re not lucky, these patients are treated sub-optimally.

There are a few things from my experience, though, that I think can serve just about anybody facing this diagnosis. So if I can leave you with a few key learnings from my own situation, I’d summarize them as follows.

1. This is an individual disease. There are many subtypes, and everybody’s physiology is different depending on the disease. Just as everybody’s situation is different depending on how and when they are diagnosed, what stage of their life they are in, how healthy they may be, and ultimately whether they want to attempt to control the disease or kill it. There is a right answer for me, but the right answer for you may be different. Recognize that you are your own best advocate, and take ownership of your disease. Advice is great, but ultimately the choice is yours.

2. Learn everything you can. Now we’re all wired differently, and not everybody necessarily has my tolerance for data or my control issues that manifested in me wanting to know every last detail. But I urge you to learn as much as you can, about the disease, about the treatment alternatives, about your doctor and his or her approach, etc.

3. Once you’re educated, pick a doctor – who MUST specialize in Myeloma -- and develop a personal relationship with him or her. Myeloma specialists are busy, and in demand. It’s also not unheard of for some to have healthy egos – and frankly, the accomplished ones deserve it. You want access to these doctors, and you want them to be emotionally invested in your well-being, to the extent possible. Some doctor’s personalities are challenging, and some are more receptive to the notion of developing a richer relationship with a patient than others. But in my case, for example, I consider my doctor and his wife to be family friends now.

4. Once you’ve picked your doctor, TRUST your doctor. As I said, there’s no one right answer. But you’ll drive yourself crazy if you second-guess everything. Do your research up-front, make your decision, and stick with the program. This is easy to say and hard to do – I faltered, but I only did it once, and now I realize I was a little silly to do so.

5. Lastly, and most importantly, be patient, be persistent, and be positive. Treatment is lengthy and all the procedures, tests, blood work, lab visits and especially waiting around can be very, very trying at times. But at the same time, the only thing you can really do as a patient in terms of influencing outcome is to be resolutely positive. Don’t let anything get in the way of your focus on battling this disease. You are bringing all your energy to it. Waiting in a doctor’s office, or enduring yet another two-hour MRI with all that banging (I’ve done seven of these so far), is just something that you have to do. Again, you didn’t ask for this diagnosis, but you’ll get farther if you just accept that your treatment is something you will simply do. Put your mind to it and don’t let the little demons of doubt get in the way. Do not yield to the disease. Your energy is critical to your well-being and as I said, it’s the most important thing you can bring to the fight. Get suited up – it’s time to get in the game with everything you’ve got.

So that’s it, really: learn as much as you can, take control of your disease, pick your team with care and make sure you are a person and not just a statistic to them, invest them with your trust and confidence, and be positive. Regardless of your treatment choice, these things will make a difference for the better in how you get through your diagnosis and therapy.

There is more hope than ever before for the newly diagnosed Myeloma patient. Huge strides have been made in the past five years, and new therapies continue to be developed. Being cured, it is said, really means growing old and dying of something else. That kind takes the “cool factor” out of it. But it’s the best outcome, nonetheless. And I hope that each of you find a way to reach it.

Happy anniversary!

Today is the one year anniversary of my diagnosis.

It's hard to believe so much has happened...diagnosis, second opinion, third opinion, research, fourth opinion, three more phone calls, finding patients who had gone through BB's protocol, conversations with them, tests tests and more tests...and of course six months of intensive treatment leading to complete remission...

Along the way, many new friends made, and of course this blog which has been so fulfilling for me for a number of reasons...

Throughout it all, the support of my family and friends, including all of you who are reading this.

It's a testament to the success of my treatment that I'm about to go out to dinner with friends this evening rather than dwell on this anniversary...I had wanted to put together a lengthy post but there will be time for that tomorrow. I did want to mark the event, though, and I'll come back and put together some slightly more coherent thoughts on it soon.

All that said, hope you are enjoying your weekends!



Nick, one year from diagnosis, with hair restored. :)

Migraines, nose hair and a new standard for complete remission?

Hello folks. Been a few days so I thought I'd post an update.

I went yesterday to get my hair cut, for the first time since March when my head got shaved in the hospital. Actually, for those who don't recall (or maybe I didn't post it), back in March, I had it cropped pretty short. I was in the hospital because of the abdominal issues and broken back, and BB came by the room during rounds. He said to Jill "you better get this guy's head shaved before he looks like a homeless person" and pulled a clump of my hair out! :) All part of his charm. :)

Anyhow, I'm glad to be back among the haired. The hair is a little lighter than it was before -- it almost has a "dusty" quality to it that I'm not crazy about. It's also more fine -- not as thick as it was before. But in the grand scheme, these are tiny little things. My hair guy made a good point -- it's not just that the cells were killed by the chemo, it's that the hair contains whatever drugs were pumped into me (albeit in microscopic qualities). That's why they can test drug use in hair for seven years or whatever it might be. So it's going to take a while for the hair to get back to where it was. That's fine -- it's not too far off.

One of the nice things about where I get my hair cut is they give you an amazing scalp massage while washing your hair before the cut. However yesterday I had an over-exuberant washer and really did a number on my neck. At the time, I thought it was a "good hurt" that would relax the muscles but I have a mind-splitting migraine that I got last night. At first, I noticed my vision was blurring -- almost tunnel-vision-like -- and I was worried that it was Velcade killing eye cells or something dire! Then I got the headache and realized the two are probably related. Here's hoping it goes away soon -- I very, very rarely get headaches like this. Maybe three or four times in my life. So I'll be monitoring it closely.

Concomitantly with hair on my head, those little facial hairs we don't think about -- eyelashes, nose-hair, etc. -- have come back. I never completely lost my eyelashes, but they did thin. I did lose my nose hair. One might think this isn't worthy of commemorating on a blog, but let me tell you, you don't realize how much sneezing you do when you don't have anything to keep dust out of your nose. I'm not talking about tumbleweeds growing in your nostrils -- I'm talking about very fine, small hairs that you don't really see (unless you are staring through a magnifying glass at your friend's nosehairs, which introduces a new set of questions). Suffice to say, I'm not sneezing as much and that's good. I had lost the ability to stifle a sneeze, actually, and I was wondering how that was going to play out in a big meeting if I all of a sudden let a huge sneeze rip out of nowhere. Thankfully, this seems to be a non-issue now.

Now, to the medical stuff.

Thanks to our friend LP, whose husband is being treated by BB now after having been treated elsewhere initially (and who is doing very well, by the way), I watched a few old presentations by BB and other doctors at various international conferences on Myeloma. It is funny to watch the clash of styles -- BB is evidently notorious based on how gingerly the other doctors tiptoed around, but he was very gracious in his comments in these clips.

At any rate, this is a couple of years old but one of the points BB made is that complete remission under immunofixation is the first step, but that the bone marrow microenvironment probably houses the myeloma stem cells that don't secrete protein but which are still there, whether dormant or active. It is for this reason that BB wants to see my bone lesions heal -- if they are gone, that's one less place for the Myeloma to hang out, waiting to return. Velcade is very good at destroying Myeloma cells in the bone marrow microenvironment, so I'm glad I'm on that. But the bones do take time to heal -- months or even years. Hopefully, it's the former in my case. We'll get a snapshot in a couple of months. But this is what BB calls "MRI CR" which means no osteolytic lesions in addition to immunofixation negative status. This is now what we're shooting for.

Meanwhile, going out of town for a few days next week to enjoy the last few days before (drumroll) I RETURN TO WORK a week from Monday. Hard to believe so much has happened in under a year -- it was right around one year ago today that my primary care doctor called to tell me that I had an unusual protein in my blood....wow...

Have a good weekend everybody.