Thursday, July 2, 2009

A number of updates...

Hello folks.

It's high time for an update, for a number of reasons...not the least of which is that the image of a poor possessed Linda Blair violently throwing up isn't the most welcoming thing to see on a webpage, so the addition of new material should cause it to scroll down a bit and not be quite as immediately off-putting.

First, I want to say a thing or two about me feeling sorry for myself. :)

The fact is, I *do* feel sorry for myself for reasons which we'll get to in a moment. But I also feel guilty about feeling sorry for myself. I know that I got a bum deal getting this disease, but I also know that many others -- including some that follow this blog -- have had this disease longer and/or in a more challenging manifestation than I do. So in feeling sorry for myself, I want to acknowledge that others have it even worse than I do. I haven't lost sight of that.

Nonetheless, my primary goal in this blog is to be accurate and honest -- I want those who haven't yet gone through what I've gone through to have my unvarnished feelings because if this blog is to be of service to anybody, honest and transparency are paramount. And the honest truth is, I am angry that I'm not in remission, and I'm very, very concerned.

I spent a couple of hours yesterday listening to my diagnosis conversation with SH, and to my first consult with BB (before my bone marrow had been done) and my second consult with him (after it had been done). Two comments they made contributed to my current feelings.

* SH noted that depending on the study, the simple combination of thalidomide and dex, which is what he would have put me on for induction, has achieved COMPLETE remission in 70% to 90% of the cases! It's funny now to hear him explain all these terms and medicines which were so foreign at the time, yet which are now second nature. Revlimid, Prednisone, Dex, Melphalan...they were all nonsense words at the time. But the point is...even WITHOUT Velcade I stood a 70% to 90% chance of COMPLETE remission, not this crappy "very good partial response" in which I find myself mired.

* BB noted that those who achieve CR in Total Therapy have a better long-term prognosis than those who do not.

I am pissed off that I am not in complete remission, and I believe that it could be because I randomized into the Lite protocol which has only one cycle of induction rather than two. I am concerned that I am going to be the proof point that the Lite protocol isn't as good as the standard protocol. And now it's too damn late to do anything about it. Other than perhaps ask for two rounds of consolidation...if that's not too late to make a difference.

I shared some of my feelings with Bonnie, BB's assistant. I asked her if I was going to rely on VRD (Velcade, Revlimid, and Dex) in maintenance to get me into CR, shouldn't I have been on this to get into remission, and THEN had the transplants...since this is what most doctors would do. She said that "[there is] not a need ever to have a remission before doing transplants. That isn’t logical scientifically. Have [BB] give you the words. If mvdtpace didn’t get you in the CR club than throwing VRD et al on the wound would not have been a better approach."

Well...maybe. Except that M-VDT-PACE, which I had, could have been repeated (as it is in the standard branch). A longer induction period would surely have gotten me closer to complete remission than was the case. One period of induction was enough to bring my M-protein down from around 8 to around 4. The first transplant took it from 4 to 0.7. What if a second cycle of induction, which would have been the norm in the Standard arm, had been administered and I went into the transplant with an M-spike of 2? For that matter, what if I'd had the more concentrated high-dose Melphalan?

What if? What if? What if?

So now, I'm concerned that I will not reach CR -- or that if I do, it will be as a result of maintenance therapy, and that I won't have received enough poison to keep the disease away.

Which brings me to my next semi-depressing observation. What should have been a hopeful presentation by Dr. KA (remember him?) to the Multiple Myeloma Research Foundation was instead depressing. KA showed a slide of a typical patient whose M-spike rapidly goes to zero, and then a new means of measuring myeloma activity which takes much longer to go away. Getting the M-spike to zero was discarded like it was a given. And here I am, unable to get there...much less achieve the more stringent definition of complete remission based on the new way of measuring the disease (which is more accurate than the immunofixation test).

KA did speak about several new types of drugs coming out, most of which I've written about here. Carfilzomib (next generation Velcade) has been shown to succeed where Velcade has failed. Similarly, Pomalidomide (next generation Revlimid) has been shown to succeed where Revlimid has failed. Heat shock proteins and HDAC inhibitors are two other classes of drugs that hold a lot of promise.

But I wasn't supposed to need any of that crap. I didn't come to Arkansas to get TREATED. I came to Arkansas to be CURED.

And that cure is looking more and more elusive.

I don't really know where to take it from here. I suppose there is still some chance that the M-spike could continue to fall, although I've now had four readings: 0.27, 0.29, 0.32 and 0.30. It's hard to be more consistent than that. I'm sure the consolidation treatment will take it down further. Whether or not it goes to zero from consolidation I'm not sure. If it does, then great, I suppose. If not, perhaps I'll get a second cycle of consolidation? Which I'm sure BB might try to resist since that would remove me and my precious data from his study. I would need to go "off protocol." But if that's what it takes, then I will insist on it.

I'm going to try to talk with Dr. SF about all of this before I return to BB's shop next week. I'm going to have a very frank and difficult conversation with BB, and I want to be armed with everything (i.e. the success rate of several cycles of VTD in induction, for example) before doing so. I also want to make sure my logic isn't flawed.

But I don't think it is.

Anyhow...more news as it becomes available. To those of you in the US, have a great 4th of July!


  1. Nick - I can completely get your frustration at being locked into some category (guinea pig?) to serve some researcher's objectives. It is worthwhile to get angry enough to fight for your own health - clinical trials be damned - and you have every right to withdraw from any process which you do not either feel or have proof is working its best for you. Or to push the research team to move you into another category so you can get what you feel certain may work for you.
    I have ranted enough and I don't want you to take this as anything but encouragement to demand the best for yourself.

  2. I think you do us all a great service by being so honest. Your numbers are still great, don't lose sight of that. I stuggle with all the information about what to eat and what 'extras' to take, somedays I just say the crap with it all, I am going to enjoy life and let the chips fall where they I read I need to give up meat and take this pill and that pill....
    I am going to chew on this while I have a steak off the grill tonight...this damn cancer is not going to control my days. So is that foolish?

  3. I am so sorry. I was following you so closely thinking that this might just be the cure that could help my son (age 50) with Multiple Myeloma. He is being treated at Mayo Clinic in Rochester Mn. He has received partial remission after being on Revelmid, Dex and Valcade and right now is not taking anything but we know that will not last forever. He has to back to Mayo every three months for a check up. He has had his stem cells harvested and frozen for use when and if needed. Your numbers are very good really--even better than his but they still feel he can be off all drugs until they start to go up. Are you going to give your body a rest or are you going to go right on to the regiment With your numbers so low, maybe you should stay off of things for awhile but that is up to your Doctor. I am just as disappointed as you are but I still think you are going to do just fine Marilyn

  4. I have no inspirational or encouraging words for you, Nick, but just wanted to let you know we are with you in spirit and feel very deeply your disappointment.

  5. Nick,
    You're so right to feel every bit of anger and frustration. And I don't think ANYONE here has ever felt that your feelings and/or depressed moments are you being ungrateful for having the "successes" that you've had so far in your fight.
    Your questions all sound extremely valid and your logic clear.
    We're fighting for you over here. Big.

  6. I feel the same way you do. Grateful, guilty, disappointed sometimes. I wanted a CR in the worst way, but I've been pretty stable and my single SCT was almost 2 years ago. Stable can last a long time!

  7. Ah yes.The guilt over complaining when others have it worse. I know the feeling and I'm gonna tell ya right now, quit it. You have every right to be pissed, disappointed with the whole damn MM mess, etc. There are always folks who have it worse and it is right to feel compassion for them but you have to give yourself a break. You are allowed to be human.
    Our best friend's cousin just died recently. She was around 40. Had 4 children aged 3 to 8.
    She was diagnosed with pancreatic cancer that was so advanced, they told her they would kill her even faster giving her chemo and she was gone in a few weeks. I certainly know that her situation is worse than ours. However, ours still sucks and we are living a nightmare most can't even imagine. I realized over 2 years ago that I am not asked to bare the grief of others. I have enough on my plate dealing with my own and
    that of my husband and kid. That's not to say that all this doesn't tear me up. It does. It affects me for a long time but you have to throw the guilt out the window, my friend. It has no place here and no good comes from it. You are entitled to think of yourself right now and
    it's the right thing to do. When it all becomes too much, you close ranks and it's just about you, Jill and the kids. That's all you need to worry about.
    Signed, a chronic over-empathizer who always worried about everyone else but is learning to simplify now. ;o)