Thursday, December 31, 2009

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.

Tuesday, December 29, 2009

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!!!!) 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!

Wednesday, December 23, 2009

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!

Friday, December 11, 2009


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!

Thursday, December 10, 2009

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!

Monday, December 7, 2009

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

Thursday, December 3, 2009

Note to self...zzzzzz....must....take....Ambien....


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.


Tuesday, December 1, 2009

My dreams of being Barry Bonds are over...


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.


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!

Monday, November 30, 2009

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!

Saturday, November 28, 2009

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...

Tuesday, November 24, 2009

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.

Monday, November 23, 2009

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!!

Tuesday, November 17, 2009

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:


This, obviously, is


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,


Sunday, November 15, 2009

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 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 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.

Friday, November 13, 2009

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. :)

Saturday, November 7, 2009

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

Have a good weekend everybody.

Wednesday, November 4, 2009

Clarifications on the previous post

I received a comment with some good questions about the previous post from the husband of a patient battling MM, and wanted to elaborate a bit on the points I made. Please bear in mind, I am a patient, albeit an educated one, but I am not a hematoloogist or medicial clinician, so take these comments as any more definitive than an interesting jumping off point for discussing them with qualified professionals to help you form your opinion.

So, to the questions:

Question one: [In comment number one from the previous entry] you are comparing a low risk myeloma patient group receiving TT3 with the total myeloma patient group. Are there any clinical trials with low risk myeloma patient groups receiving some of the other treatment programs to compare with?

Answer: I was talking discussing this with my wife this morning (without realizing you had asked) under the heading of "why isn't everybody doing this yet." I am sure the data is out there, and eventually BB or others will probably show it to prove more definitively that his program works. He has gene array information from the people that get tested there initially and choose to go would be a matter of tracking these people to see how they fare from other treatment, and then separating those out into low versus high risk groups. Right now, on a blended basis, BB believes he can cure 74% of newly-diagnosed patients with the current protocols. The highest official figure I have heard from anybody else (with the possible exception of BB's former colleague in Utah) is 0%. That's good enough for me. Until I hear another doctor, with data to support his contention, that he can cure, say, 30% of his patients that are newly diagnosed, there's not really anything to compare to. Other people don't believe BB is able to really achieve these results. Total Therapy's results have really only been around for 2-3 years. Eventually, one hopes they will catch on.

Question two: I am not sure what number 2 is saying. I think it means the average health of the general population is pretty poor which is not surprising. You are saying that the low risk myeloma patients that have TT3 treatment will outlive the average population, amazing. I think this says more about the health of our general population than this myeloma treatment method.

Answer: I don't disagree with you that people should take better care of their health. Bear in mind, MM patients in BB's clinic are not told to stop drinking any alcohol, become a vegan, or anything like that. He counsels people to remain in good physical shape, as any physician would, because obesity is a problem for EVERYTHING.

However, since it originally took much longer for previous regimes of Total Therapy to surpass the general population, it's not really a function of otherwise healthy people not taking care of themselves. I mean that might explain some of it, but the fact that successive treatment of Total Therapy 2 or 3 demonstrate improvements while the same general population is there seems to indicate that general population health doesn't matter.

Here's the graph:

The horizontal line at 1.0 is the expected survival of the general population. You can see in Total Therapy 1, lower survival until 15 years or so. But somebody who went through Total Therapy 1 and lived for 15 years actually had a higher chance of being alive than somebody who didn't have myeloma. This is a long-term view, to be sure. But look at Total Therapy 3 -- if you make it five years (and recall, 90% of low-risk TT3 patients are in complete remission after five years at this point) you are in line with the general population, and based on the experience of both TT1 and TT2 should be superior (although the data doesn't exist yet as TT3 is only five years old).

Question 3: In number 3 I am not sure how 5 years of statistics can prove something beyond 5 years. If you live 7 years beyond start of treatment and die of another cause is that a cure? But, you would need more than 5 years of statistics. I assume the 5 years may be the collection period and it includes patients with more than 5 years of data. Do you know what percentage would be for one of the other popular treatment methods with low risk myeloma patients?

I'll answer in several parts. Without going into too much detail, if you have a trend of information for five years and it correlates with other variables, you can perform a statistical analysis called a regression that allows you to extrapolate additional information over time. Taking a very, very simple example, if you knew that 2 years ago your mortgage payment was $1,000 a month, and a year ago it was $950 a month, and this year it is $900 a month, you could accurately predict that in two years it would be $800 a month. Obviously, the Myeloma data is much more complicated than this, but the same statistical tools work with it.

If you live 7 years beyond treatment and die of another cause, in BB's data, you are counted as a fatality. Thus, to be a survivor, you have to have survived everything. That makes these statistics all the more impressive.

Total Therapy 3 was initiated five years ago, and thus there are only five years of data. There are much longer data sets for Total Therapy 1 and 2 -- the survival curves show a similar plateau after a number of years -- i.e. if you survive that long, you're probably cure. Unfortunately, in Total Therapy 1 and 2, the cure rates weren't high enough. But Total Therapy 3 -- which added Velcade, Revlimid and some other changes in therapy cadence -- has been remarkable.

This graph shows both low and high risk myeloma patients. The gold standard chart is event-free survival, which shows that after five years out, close to 80% of all TT3 folks are still alive. Compare with, over time, the survival rates of TT1 (around 25% at five years, TT2 without thalidomide (around 40%), TT2 with thalidomide (around 60%), etc. You can see the shape of the curves are relatively predictable. They key is where that plateau forms -- plateau meaning that beyond that point, if you haven't had recurrent myeloma, it won't be coming back. BB currently believes this is around 72 months from starting treatment.

For low risk disease, the data is even better.

As for the percentage survival rate for other types of therapy, nobody keeps statistics because nobody else believes the disease is curable. I was flat out told by my first hematologist, who did ultimately suggest I check out Arkansas, that he did not believe transplant even prolonged life, much less cured the disease. He is still an advocate of a transplant only because that means you can go off all therapy -- until it comes back. So they don't bother tracking this. I only know this: while the data looks back five years, so doesn't reflect the full benefit of Velcade, the American Cancer Society published last year that five year survival is 34%. Some of those people get poor care, but some also get Total Therapy. So to interpolate from that, overall survival from other methods has to be a hell of a lot lower than Total Therapy. New drugs, such as Carfilzomib and Pomalidomide, may change the game when they come out in a few years but nobody is talking about them like a cure.

Question: In number 4 are you saying the average age at diagnosis of low risk myeloma patients receiving TT3 are 71 years old. I thought it was the young and healthy myeloma patient recommended for this treatment method.

This data comes from different places. I recall hearing that the median (not to say the average) age at diagnosis of Myeloma overall was 71, however I suspect this is coming down into the 60s as more and more young people are getting the disease. BB will transplant people older than 71 and has been doing this for some time. It is another area of disagreement between him and other doctors. Here, I tend to be political correct and shy away from strongly suggesting that an older person dive into this program because (a) they might be sick from something else, (b) the treatment is not a lot of fun, and (c) there is an increased treatment-related mortality from treatment as age advances -- perhaps 3% or so. This is not trivial, but compare that against 70% mortality from the disease itself over a five year timeframe and it starts to come into focus. It's an individual choice, of course. In the case of your wife, I would probably at least get a second opinion from a myeloma specialist (if not BB himself) to discuss transplant. The woman I first consulted about Total Therapy was a patient, now cured, who was in her late 50s when she received treatment and was transplanted despite the fact that she had lupus. So he is more aggressive in transplantation than are most places.

I hope these answers are useful to you, and to your wife, as you navigate your own way through your battle. There is more hope than ever for Myeloma patients, whether it is through the Arkansas approach or through the variety of new and effective drugs that have come on the market in the last five years, and which are continuing to be developed. I hope that you have many long healthy and happy years ahead of you both.

Tuesday, November 3, 2009

Quick blood results, and HURRAY FOR TOTAL THERAPY!

Very quick update, as I've been busy with a wonderful visit from my brother Pete who was kind enough to visit me in Arkansas during far more dire times. It's great to spend time with him while healthy!

At any rate: quick and uneventful visit to the doctor's today. Counts are good! White count is 5.1, hemoglobin 13.9, platelets 140. Solid in all respects, and in the event of the WBC and platelets, a tick up. Hemoglobin can be reduced due to water retention from the dex, which I took this morning, so I'm not concerned about that too much.

No news on protein or other stuff...probably not for another two weeks.

Now...I know we have had a bit of back-and-forth on Total Therapy on this and other blogs recently. I want to restate my beliefs very clearly:

1. For newly-diagnosed patients that have not undergone other treatment, and who are young and healthy enough to withstand it (i.e. 40 and healthy = a good candidate, 78 and sick = not a good candidate), this program is the right choice. Clearly, as I'm about to explain.

2. 15% or so of patients have high-risk disease which is not as responsive to Total Therapy as the other 85%; and some people are allergic to one of the three long-term agents (Velcade, Revlimid and Dex) that are used over a period of years as part of the TT protocol, so it is not for everybody -- just for newly-diagnosed young patients that are low-risk.

3. For folks that have been treated elsewhere, or who have high-risk disease, there is still hope from new treatments and new research. Total Therapy is not the answer for everybody.

Now..having said that, let me just cite a few statistics from the recent briefing I received from Arkansas.

1. NINETY PERCENT of low-risk patients in Total Therapy 3 REMAIN IN COMPLETE REMISSION AT FIVE YEARS. Compare this with American Cancer Society statistics stating that five year survival is 34%.

2. After five years post-diagnosis, the likelihood that a random person in Total Therapy 3 is still alive is HIGHER THAN THE AVERAGE FOR A US CITIZEN OF THE SAME AGE.

3. Statistics being built over five years indicate that SEVENTY FOUR PERCENT OF LOW-RISK PATIENTS UNDER TOTAL THERAPY THREE WILL BE CURED OF THE DISEASE. Compare with other programs that still claim it is incurable!!!

4. The median survival rate of patients under Total Therapy 3 is projected (based on statistics) to be FIFTEEN YEARS. The median age at diagnosis is 71. Do the math: people are being cured and dying of something else!

5. Ultimately, these and other data allow Arkansas to publish the following statemenst: "Cure is anticipated for the majority of genomically defined low-risk myeloma." And: "The newly diagnosed multiple myeloma patient can expect to live more than 10 years." Where else in the world would this statement be true?

I reiterate: I will beat this disease. Any others out there reading this, if you are newly-diagnosed, without drug-resistant disease, and in good health: go to Arkansas. Go there. Get Total Therapy. Keep a positive attitude. And be thankful that you were diagnosed early enough, and in a position, to receive this type of treatment. We are unlucky to have this diagnosis, but we still only represent about a third of patients seen there. I've met, and become friends with, a great many good people who were not so lucky...some of whom are no longer with us, some of whom are resilient and upbeat in the face of their disease. BB is a scientific I will save my prayers for those that aren't able to receive the full benefit of BB's program. The rest of you: get there!

Wednesday, October 28, 2009

Side effects and how to fight them, and what's Michael York doing in my blood wearing a jumpsuit!!!

I had written that I was becoming concerned about some of the side effects of maintenance, particularly as pertain exhaustion and overall well-being. I'm pleased to report that there appears to be an ebb and a flow to the severity of this. I felt pretty good yesterday and I'm sure today and tomorrow will be rough unless I can get more sleep, but at this point (knock on wood) I feel like it is pretty much manageable.

* Dexamethasone Side Effects (20mg every Tuesday)

- Dex voice, usually comes on Tuesday afternoon and lasts through Wednesday, no real cure although Pantoprazole probably doesn't hurt

- Sleeplessness. Hits Tuesday night and runs at least through Wednesday night. Have been treating with use of Ambien. Usually slightly more effective on the second night than on the first. May need to treat with two glasses of red wine followed by Ambien, and make sure not to drink anything with caffeine on these days (I had three yesterday which probably didn't help the situation).

- Hunger. Sometimes, noticeable, other times not a big deal. It's almost like it locks in a constant level of hunger in your subconscious based on where your brain was at the time the dex kicks in (by my estimate yesterday, about 90 minutes after taking it). In the past, I have been starving at times -- like no matter how much I ate, my stomach was telling me I had no food in it. My brain was also not sending out "you're full, no need to eat messages." But yesterday, I was late taking the Dex (I usually do it first thing) and I had a Zone Bar (200 cals) and a couple of low-cal, high-fiber tortillas (this is a more lyrical way of saying I chewed on a thin disc made of sawdust -- the nutritional content outstrips the flavor). But this was very filling, and I took the Dex just before the two tortillas. I ate a light lunch and a light dinner, and I don't feel starving. My stomach, at least, feels sated. I could certainly eat more, but I don't have the constant ravenous feeling. So advice: consider taking Dex early in the day but definitely take with food. I notice that this is compliant with the dosing information as well. My brain is still playing tricks on me, and failing to send out the "you are full" signal that we usually get, but my stomach still feels somewhat full, so it's preventing me from eating everything in sight. This is a good trick to know.

- Weight gain. Not quite the same thing as hunger. I've noticed that I drink three liters of liquid a day and pee no more than half of this back out. This fluid retention was a real pain when I was on the high-dose pulses of Dex. I noticed it at bit last week on the Dex but I am hopeful that it will be manageable. I think I only gained about five points (not the twenty that I did in Little Rock on that last dose!) but it took almost a full week to be rid of it, and here I am back on the Dex now. I will keep tabs on this.

- Heartburn. I did not take Pantoprazole yesterday, but I did not get heartburn. I will take some this morning as a preventative. It may be that if you take it every other time, that's enough. For sure, my doc would tell me to take it every time (and probably every day) but the fewer pills I really need (and these are optional supportive care, not therapy) the better, is the way I look at it.

- Muscle atrophy. I notice it, still, but the two-times-a-week grueling physical therapy appears to be more than keeping it at bay, at this point. I see muscle definition improving throughout my body, which is a welcome relief. Even if I have to go to one day a week once work resumes, it should be enough to counteract the dex.

* Revlimid Side Effects (15mg / day, days 1-21 of 28 day cycle)

- Platelet suppression. Before maintenance my platelets were over 150. Last week they were 120. After a week off, they are back at 130. I don't know if they will continue to climb or if Revlimid will hit them immediately. It could be that 120 will be the "new normal" for the next three years, and that's not enough to have any real impact on me. If it gets below 100, then we have to start taking corrective action as it may interfere with Velcade administration (so said the nurse yesterday). So I'll continue to monitor this closely.

- Red blood count suppression. Before maintenance my Hemoglobin had climbed back to 14.7, fully healthy! In subsequent weeks it was 14.3 and then 13.5. I think (from memory) last week was 13.3. I then had my time off Revlimid, and yesterday's count was 14.7. So happily this one seems to bounce back fully during the week off. I will be pleased if it is able to do this regularly as having a good red blood count is essential to feeling good.

- White blood count suppression. I didn't think this was going to be an issue, as before maintenance I was either 5.3 or 5.5. Yesterday's blood count was 3.9. There remain a high percentage of young cells so it could be the system is still climbing, albeit in fits and starts and not helped by the Revlimid or Velcade, but 3.9 is starting to be disconcerting, especially during flu season. WASH YOUR HANDS, EVERYBODY!!! Below 3.0 and they will not want to provide Velcade, so let's hope this is a bottoming out. I REALLY DO NOT WANT MORE OF THAT DAMN NEUPOGEN!

- Mojo suppression. I've written about this before but I'll be more blunt now. There is an almost total loss of desire. The presence of two young kids and all the other things that are stacked against robust physical activity in a marriage after 16 years don't help either, but a major part of this has to be the meds. I'll be going to a Urologist at some point to see about the testosterone, which my dear friend Dr. Bill informs me can just as easily be delivered through a topical ointment (good enough for Barry Bonds, good enough for me) as an injection. Plus if I use enough of it, I'll get big muscles! We just have to make sure not to use too much or it can cause prostate cancer, which I've only recently been de-worried about. For those wondering, this is not a "purple pill" issue. It's more than there's no point carrying around a baseball bat if the concept of baseball is completely uninteresting to you.

- CONSTIPATION, when used with the Dex. I think this takes a while to build up. I didn't notice it until the third cycle of Dex last time. Then I started taking one Senna in the evenings for a few days, and when that didn't seem to be quite enough I added in a Docusan on two days. This was probably just a HAIR too much. No major disasters. But I think the key is to take Senna at the first sign of trouble (i.e. any day without a good, normal BM) and then do two a day on the Senna and one dose only of the Docusan. That should be enough. I'm continuing to fine-tune this approach and the reality is everyone's body is probably different so your mileage may vary.

- Deep vein thrombosis, when used with the Dex. I have had no issues but I highlight this because it is one of the dangerous side effects. I am taking one 81mg baby aspirin a day (down from two, given my relatively low platelet count) and I anticipate no problems. Of course, anticipating problems would keep all the excitement out of it! :)

* Velcade (1.97 m/m2, by infusion, each Tuesday)

- Count Suppression. No, this is not Dracula's totalitarian cousin. But it's covered above. Not sure how much of it is from Velcade versus Revlimid. BB had said that Revlimid it the major culprit, but since Velcade tells cells that they are ready to die, it has to get rid of some healthy cells as part of the collateral damage, and that probably means middle aged cells are dying a little early. It's like Logan's Run in my blood! Carousel! Carousel! Run, Logan!!!! (major 70s reference there -- and now you get the strange second half of this blog entry's title...or if not, imdb is just a mouse click away).

- Neuropathy. I had noticed the other day a tiny tingling in my feet, which was gone yesterday and today. Maybe I was imagining it, maybe it is so mild that it only lasts a day or two. Hard to say. Word on the street (this is where I get most of my clinical pharmaceutical information)** is that Velcade-induced neuropathy goes away when the treatment is stopped, unlike Thalidomide-induced neuropathy. I read from other people's blogs that Revlimid can indeed cause neuropathy as well; hopefully I will be lucky as it is certainly less of a problem from Rev than it is from Thal and I made it through six courses of Thal without problem. I am taking MetaNx every night when I am on Revlimid, and take a break from it when I stop for a week.

I had intended to write more, but this is already a monster post, so I'll follow up in a day or two with some other tidbits.

No news on the protein situation, though -- they only run those numbers once a month out here which is a little frustrating. I want to see that immunofixation test go back negative!!

Anyhow, thanks, as always, for your interest and support!!!

**This is sarcasm. I really only speak with members of the drug culture about particle physics.

Sunday, October 25, 2009

Where'd my energy go? And notes on a very nice lunch...

I'm pooped.

Two weeks ago, I felt great. My hemoglobin was 14.5 and didn't seem to be affected by the Revlimid, I was full of energy and felt like every day I was getting stronger.

The last four days or so, though, I've been very, very tired. Not quite like I was when I was recuperating from the transplants, but very tired. Nodding off on the couch sort of tired.

I don't know if this is a reaction from the maintenance therapy, or if I'm simply coming down with something that hasn't manifested fully yet. Frankly neither of those is a particularly appealing outcome. I'll get more bloodwork done on Tuesday and should have an idea if there is a clinical explanation like low red blood count. Hopefully it will have recovered because I start the second course of Revlimid that evening and whatever the blood has done to recover over the last seven days will have to be enough to sustain me for the next three weeks.

I am reminded that Kathy Giusti of the MMRF told me, when I first spoke with her shortly after my diagnosis, that "Revlimid is a very easy pill." Having said this, I sense that she was pleased to be off it when I had breakfast with her a few weeks ago.

Speaking of meals, I wanted to write a bit about a very nice lunch I had on Thursday with Les Bider, CEO of PinnacleCare.

Regular readers know that PinnacleCare ( is a healthcare advocacy service that basically allows you to delegate a significant portion of your care -- everything from research to appointments to medical records to prescriptions -- and free up your time to focus on getting (or staying) healthy. I'm probably understating the range of their services, but in my instance they have been very helpful from a practical standpoint, and also immensely supportive. I think i wrote here about the care package they sent me in the hospital, including handwritten notes from employees with relatives that had beaten blood cancer, a spiffy T-shirt that read "Cancer Sucks" and which I wore with pride in the transplant clinic, and candy that appears to have been consumed by my caregiver while I was in my Dilaudid coma. :)

Anyhow, Les was in Los Angeles for a few days and invited me to lunch to talk about my situation, my experience with his company, and the fact that we have probably almost crossed professional paths half a dozen times in the past ten years (his background prior to PinnacleCare is in media and private equity). We had a very nice conversation and I look forward to continuing our dialogue. I think it's a pretty remarkable thing for a company's CEO to take time out to meet with customers, let alone to have a good knowledge of that particular customer's health situation. PinnacleCare is not inexpensive, but I have found them very helpful and while I hope nobody reading this is facing a health situation like mine was a year ago, if any of you are, you should look into this company -- they can add more energy and resources to your fight and they are truly kind people.

Okay...I'm gonna try to get some rest now. I've been up since 2AM and it's 5:30AM now. Hard to say why I can't sleep at night but am exhausted during the day...haven't had Dex in six days so that can't be it....


Friday, October 23, 2009

Sad comments from a new friend, and more reflections on control versus eradicate

I received an email yesterday and I wanted to share some of it as it affected me rather profoundly. I've edited it as appropriate to preserve the Myeloma content and not the rest of it.

I am so sorry to hear of what you have undergone in the past year. My dad has battled Multiple Myeloma for almost 5 years now. Unfortunately, he passed away this past Tuesday morning after being infected with the flu, which bridged over into pneumonia. He was only 51 years old. I’m 25. Your experiences sound very similar from all that I have read.

My dad always made it a point to stay out of public areas during the flu season. This year, as his health waned, we decided it would be good for him to get out of the house. But I guess something got past his immune system. As you know, quality of life is a complex topic. Should you stay in and not take any chances, yet not fully living? Or should you go out and live your life to the fullest, yet still taking health risks?

Here’s what I found: when my dad’s numbers were good, he was able to live a relatively normal life. We went out to eat. We went to concerts. We even made a CD together. He and I are both musicians and I’m so happy we were able to do what we was the only time my dad was truly pain-free. I told my dad your story about a month ago. I told him about the stem-cell transplants and such. He never underwent the procedure, but when I told him that it had seemed to work for you he said to me, “I’ll do anything it takes. I want to survive.”

One more thing, Dr. JB [Nick's note: the same JB that I've written about here as the anti-transplant guy] is one of the leading doctors in Myeloma and Bone Cancer Research...He was very comforting to my dad and if you need any more doctors’ support, he may be of great comfort to you as well.

I was so sad to hear of this young man's story, and his father's story. And I am moved to comment, perhaps more strongly than I have before, on the different approaches to battling this disease.

I have been corresponding of late with a terrific man, Pat Killingsworth, who has taken a different approach to his Myeloma in terms of treatment, but who has the same approach in terms of sharing his experiences in the hopes of helping others. His blog can be found at, for those who are interested.

Now as I said...Pat's approach is quite different than mine. He described it to me as "stick and to fight another day" and put off serious treatment such as a stem cell transplant until such time as his current remission (created from radiation and thal/dex, I believe) lapses. Pat's approach is very cautious, where mine has been to charge ahead full steam. In full disclosure, I remember when I was getting a blood transfusion a few months ago I happened upon Pat's blog that day -- before I knew him -- and it coincidentally had all the dangers of blood transfusions listed! :) I remember writing that one can go crazy from thinking through all the many things that COULD happen from these other treatments. But at the time, the one certainty was that I was severely anemic and felt terrible, and getting a unit or two of blood would make a big difference.

Pat notes in his review of Total Therapy on his blog from a couple of weeks ago that Myeloma treatment is guesswork -- I'm not sure I agree 100% with that, but I know where he is coming from. But I DO know that in many, many cases, the decision to "live with the disease" is tantamount to the decision to "die from the disease."

JB, he of the anti-transplant bent, obviously treated the man whose son wrote to me. A man who at age 46 was diagnosed, who never underwent a transplant, and who five years later is dead. From the flu. A man who was, if I may infer from the letter, unable to live life to the fullest except in snatches here or there when his numbers were good.

JD -- the man with whom I had dinner the other night -- if you are reading this, please carefully consider that letter. Consider what happens if you don't take the aggressive approach. Is Total Therapy right for everybody? No. 15-20% of newly diagnosed people do not respond well to it. If you have been treated before, you won't benefit as much from it. If you are old and have other illnesses or are in poor health, it can be overwhelming.

But for a young, otherwise healthy, newly diagnosed patient, I truly believe: you stand the best chance of being cured from it and resuming a normal life than from any other treatment alternative available at this time.

Take the fight to Myeloma. Kill it before it kills you.

Thursday, October 22, 2009

Side effects and other updates, plus the joy of giving back

Howdy folks. Time for an update.

I went in for my weekly Velcade on Tuesday, and then back to the same office to visit with Dr. GD yesterday.

The Velcade infusion went smoothly -- I've gotten it down, knock on wood, with this portacath now. I use something called Emla cream, which is a topical solution squeezed out of a tube that is basically Lidocaine. I smear this goop on pretty thick and then cover it with good ol' fashioned saran wrap, like the kind I used to use in Little Rock while showering. I do this about 90 minutes before I arrive at the doctor's office. Then when they get me in the infusion chair, they remove this and spray a very cold ice spray on it to further numb it. This is something they cannot do in a hospital, I am told, as the icy solution used to be flammable and even though it no longer is, most hospitals still have protocol against using it.

I've had the ice spray without the Emla cream before and I can tell you, it's bloody cold and it stings! The Emla cream makes this unnoticeable. So I know that it's working.

By the time I've been flash-frozen, inserting the needle consists of a tiny amount of pressure for an instant, and no pain or discomfort beyond that. Similarly, removal of the IV is very simple as well.

So at this point in time, I am glad I got the portacath. There is the ugly scar and a bump under the chest but it's not the end of the world and I don't think I need to have it relocated to the other side or removed. I've had the painful one accessed twice and the less painful one accessed three times, and they have all been without event. Next Tuesday is the painful one again, and if it can be done as easy as last time, I will pronounce things a-ok.

I was anxious to see labs with some protein information in them to see if the immunofixation test is negative, but alas all they had for me was CBC (complete blood count) from the previous week. Of note, WBC was holding at 5 and change, HGB was at 14.3, down a tick from 14.5 but still good, and platelets were 127. Low, but not as low as I might have feared. That bruise on my left arm is still there -- I think it is simply from one part of physical therapy, where I prop my body up on alternative forearms and use that to support my entire weight by lifting my hips up off the ground. This applies pressure to the forearm and is the only thing I can think of that would have caused the bruising.

At any rate, I went to GD yesterday armed (har har) with this and other questions. And I did get the results of this weeks CBD, which showed a dip in WBC, HGB and platelets to 4.9, 13.3 and 123 respectively. Boooo....especially HGB as I was enjoying not being anemic. Anyhow, highlights of the conversation with GD:

1., The reading from the immunofixation test is of no consequence, evidently. He was very dismissive of it, and said it was absolutely nothing to think about. We will watch it, he says, and see if it increases but as of now, it's nothing. Now...this is not something I wanted to hear. It is another half-answer and it doesn't satisfy me. I have resolved that I will need to speak with BB about it in January once we have a bit more data. But what I want to know are very specific answers to very specific questions, with supporting information. Maybe I just need to "train Dr. GD" (to use the words of our friend and fellow traveler LP) -- I am not the typical patient satisfied with a glib response. I want to know things like:

a. Does this mean I never achieved true complete remission, or is this noise within the test acceptable in the complete remission category? And if the latter is true, is there a more stringent complete remission that I should hope to achieve?

b. More to the point, does the presence of a faint monoclonal band even indicate myeloma, or in the context of the oligoclonal bands observed elsewhere in the spectrum is it a sign of either treatment or normal protein functionality?

c. How long can I expect the numbers to bounce around before we lock down into a permanent negative state, assuming we want and expect to see that as a sign of favorable response to treatment?

d. At what point should I become concerned -- NOT when the protein comes up, but if, for example, we find faint monoclonal bands each month for six months, etc.

e. What percent of the general population would have this feature in their blood -- clearly it would exist without so much as a diagnosis of MGUS since there is such a microscopic amount of m-protein that it wouldn't show up under SPEP, let alone less stringest tests like the original total protein analysis that my primary care Dr. PZ caught about a year ago to this day. And is there a chance (and if so, what chance) that I've always had this, and if so what does that mean vis-a-vis my Myeloma? Are they unrelated or is it back to a dormant state, etc.

2. I was excited to have briefly dipped below the 13 stone threshold, down to 12 stone 13 and a half! On my way! And yet I've noticed that post-my Dex on Tuesday, I've gained about five pounds back (three as of the doctor's visit). Most of this, if not all, is water weight as I've been drinking lots of water and haven't peed much. Mild constpiation may also be an issue -- I've got lunch today with the CEO of PinnacleCare followed by golf and I don't particularly want to "prime the pump" for an unexpected bathroom visit so I'll probably wait until this evening to dose up but I'm not going to let it go past tonight.

3. The weight gain from the Dex is also influencing, to a degree, my blood pressure, which was a lovely 116/71 (thank you, Revlimid!) on Tuesday but 133/83 on Wednesday. I asked the doctor if he concurred that this, the weight gain, and the drop in hemoglobin from 14.3 to 13.5 were as a result of water retention from the dex and he believed it was. Hurray for Nick the amateur hematologist! Now if only I could pee....

4. Dex causes insomnia even after it is done being taken. I took Ambien on Dex day and again last night. Both times I was able to manage only about six hours, which means I wake up groggy. Still, this is better than not sleeping. I will take one more Ambien tonight. I don't like taking three a week of them but they are supposed to be non-addictive. We shall see. (ed. note: Well, I just saw, courtesy of a Google Search for "is Ambien addictive?" Turns out it is. Maybe two nights a week is all I shall use it for...I'm yawning as I type at 5:45AM, so hopefully tonight I'll be out like a light).

5. Dex causes esophageal problems (e.g. "Dex voice") for a couple of days at least. I took Pantoprazole on the morning of the Dex and again yesterday and have had no heartburn. I am not going to take it today, and see what happens. I want to be on as few of these supportive care drugs as possible.

6. I finished my first 21-day cycle of Revlimid without any side effects to speak of, really. I sometimes notice a tiny bit of tingling in my feet but it's really nothing to speak of...barely noticeable and absent most of the time. It's probably got nothing to do with anything. But I do take MetaNx once a day and I may double up just to be safe. Any neuropathy I get at this point is probably from the Velcade and would be reversible, and I don't really have anything to be worried about at this point. Certainly nothing anywhere near the feeling I would have of my foot being asleep, certainly. The Revlimid did, though, as expected, bring down blood counts. I was surprised the HGB held up as well as it has. Hopefully the 7 days off will allow these counts to go back up before they get hit again for the next cycle.

7. Like its cousin Thalidomide, Revlimid does completely eliminate the desire to "multiply" (in the sense of Genesis Chapter 1). Now that my PSA tests came back very, very low (meaning there is no risk of prostate cancer) I am free to receive the BB-suggested shots of testosterone. Who knows if this will have any effect but it can't hurt my physical therapy as well as my mojo, as I was referred to a urologist by Dr. GD for the shots.

8. GD did not think the bruising on my arm was from platelets and that the platelets, while barely in the normal range, are acceptable. I had called Arkansas to suggest going from 2 aspirin a day down to 1, and they agreed. GD concurred with this. So for now, I reduce the Aspirin intake a bit and watch. I do think the bruising on my arm is from the platelets -- it's not like I banged my arm anyplace. But we'll see.

9. BB had ordered every week complete blood panels, CRP, liver numbers, protein SPEP and immunofixation, etc. GD flat out refused, saying it was too much. He would do it every other week. This seemed acceptable to me, although I must admit I was a bit irritated that he wouldn't simply follow BB's orders.

This is a good segue to another discussion I had with LP, she of the "training the doctor" quote above. LP's husband D was diagnosed and previously treated for some time before going to Arkansas to go through Total Therapy 6 (the code for double-transplant candidates who had previous been treated elsewhere). D is doing great, and they have returned home to enter maintenance. The doctor they selected, like my own SH, is I'm sure a good hematologist but he doesn't believe in maintenance and he was dismissive of BB's protocol. My suggestion to LP, which is where I came out as well, is to find another doctor. You have chosen a therapy not at random: it's the one that you believe will give you the best chance of beating the disease. I am obviously big on learning as much as I can, and I like to control what I can, but at some point you have to trust the doctor and a sense of trust is critical -- as faithful readers have seen in my own blog -- to making it through those inevitable times when the numbers aren't what you want to see. You have to have faith in the protocol and in the doctor in order to keep your positive attitude. So if the maintenance physician is muttering under his breath or shaking his head reading the followup instructions from BB (and even SF, a fan of BB's, said the instructions were "a bit on the imperious side") it's not going to be conducive to the strongest psychological approach.

GD's irritation with BB's weekly run of tests -- and his incomplete answers about my immunofixation situation -- was enough to rub me the wrong way, actually, but as he is generally with the program I'll stick with him.

So anyhow, that was my free advice for LP. I was also fortunate enough to meet with a newly diagnosed patient, who wants to keep himself private so we'll call him JD, after his profession. He's my age and in Los Angeles. I spoke with him for perhaps half an hour on Tuesday night, and last night we met over dinner for two hours.

He said he'd found my blog and had been reading it and found it helpful -- take THAT, Brother Ted! :) Anyhow, meeting this gentleman in essentially my own situation (he is in stage 1, has not begun treatment yet, is evaluating his options, etc.) about one year removed is a remarkable thing and it gives me the rarified feeling of almost looking back through time and trying to help myself. I've taken a keen interest in JD's well-being and I plan on being a resource to him for anything he needs at this time. Diagnosis is frightening, and his questions were very well informed -- in part from my blog, which is in itself quite rewarding as my goal all along has been to help people that are going through diagnosis and treatment by giving the non-white-washed version of everything.

JD has a lower M-protein than I did on diagnosis (he is 3.3 versus my 4.1) and importantly his bone marrow is only 20-25% plasma cells where mine was 70% or so. My initial advice was for him to do research, live his life, take his planned vacation, spend time with his young son, figure out what he wants to do...and then go for it. He's considering treatment locally and I suggested that he meet with SF out of City of Hope, but I am not shy about suggesting BB as the place to go.

Bart's data shows, as of earlier this year in a presentation to ASCO, a 74% cure rate for low-risk patients in Total Therapy 3. And that includes patients that have not achieved complete remission (recall that achieving complete remission increases the likelihood of sustained event-free survival by about 25%). Combining these statistics seems to suggest -- and I'm not being totally scientific here as they come from two different data sets but they are nonetheless related -- but it seems to suggest that the cure rate for people achieving complete remission EXCEEDS 90%.

This in a world where nobody else will even suggest that the disease is curable.

For a young, healthy man like JD, Arkansas is the place to go. It's a sixth month inconvenience. It is an unpleasant experience. But it will most likely save his life.

And in the meantime, I am here for anything he needs. I was so thankful for the opportunity to speak with him and I look forward to being a resource to him and others going forward.

And with that, I bid you kind folks adieu for another few days.

Saturday, October 17, 2009

Ouch: A catalog of aches and pains, sympathetic and otherwise

Happy Sunday, folks.

A quick run-down of a few things.

* I'm starting to see some side effects from the Revlimid. I'd been noting platelets counts were falling, but yesterday the wife noticed I had a large bruise on my arm -- nine inches long by a couple of inches wide. Not pitch-black, but definitely discolored. I have three more days of Revlimid this cycle and I'll then have a week for the counts to try to recover, but I will speak with GD about this to make sure things aren't hinky. One possibility would be to discontinue or reduce the dosage of aspirin -- it doesn't look like my blood needs to be any thinner.

* I am in a massive amount of the good kind of muscle pain after a strenuous physical therapy session on Thursday. Two days later and it still hurts. I'm pleasantly surprised by the response of my muscles to only a few sessions -- I'm already seeing the return of some definition. Strength and stamina will hopefully follow hand-in-hand but it's nice to see tangible evidence that I'm battling the dex-induced atropthy.

* In correspondence with our friend and fellow patient PB and his darling wife C, who are going through an anti-myeloma program in Michigan that sounds similar in concept to Arkansas if not in the specific regimen, I was sorry to see that the ol' constipation issue isn't just in reaction to the cocktail prescribed in Little Rock. P went to the ER same as I did. It's a sad coincidence that Revlimid had a pretty nasty impact on me in this area, too. Fortunately, I noticed it in time and started taking Senna and Docusate. The problem has now resolved, but it is another reminder: these immunomodulatory drugs do cause things to stop working in the GI department. For those going through this therapy, keep close tabs on this so it doesn't get out of control!

On the subject of others suffering from this disease, I also want to note that I heard yesterday from MH, a gentleman from the greater Los Angeles area who went to Little Rock with his wife so that she could be treated for Myeloma. This is a very sad story, but it's germane. While there is a lot of hope for this disease -- whether through Total Therapy's goal of eradicating it, or through new drugs which may hold promise for those choosing to control rather than eliminate the disease -- this is still a killer.

MH's wife was treated initially by Dr. JB, a prominent Myeloma specialist who is opposed to transplants. He represents the opposite end of the spectrum from BB, and the two are not exactly pals. JB treated MH's wife for approximately six months, and her condition worsened. She did not respond to the therapies. MH asked questions and was dissatisfied with JB's answers. When his wife took ill, she went into the care of Dr. RV, another prominent Myeloma specialist out here. I believe RV did one transplant almost immediately, since the poor lady was in very bad health. MH credits this procedure with saving her life at the time. However a few months later, her Myeloma was back, and RV referred her to BB since the Myeloma was advanced and BB's shop is often the place of last resort.

To make a long and very tragic story short, MH's lovely wife was so ill by the time she arrived in Little Rock that even an injection of Lovenox caused tumors to appear instantaneously at the site of the injections. There was nothing that could be done. MH's wife succumbed to Myeloma just a few weeks after her arrival in Little Rock.

Speaking with MH yesterday reminded me once again how fortunate I am that I was diagnosed early, that I had time to research the disease, and that my therapy has gone according to plan. There are many others for whom this disease is an even worse diagnosis, and while I am a big believer in Total Therapy there are those (about 20%) who do not respond to any treatment whatsoever, whether transplant-related or novel-drug related. My thoughts and prayers are with MH and his wife, and with the patients and families whose disease is in a more dangerous stage than my own.