Wednesday, June 24, 2009

A visit with Dr. SH, or "stepping outside BB's world for a moment."

In addition to having my blood drawn yesterday, I spoke with Dr. SH, the hematologist / oncologist in Beverly Hills who diagnosed me back in November.

First, I have definitely hit a plateau. The M-spike on my draw last Friday (the 9th) was .32, to go along with .29 the time before and .27 the time before that. SH said these figures are "too low to be of consequence" and that they were all within the margin of error and that it would be impossible to interpret them as rising from this data, so I'm going to assume I am at 0.3 and that is that for this round of treatment.

It does piss me off that I went through a second transplant and only went from 0.7 to 0.3. I expected more. Still, I have a round of consolidation therapy, and then three years of velcade, revlimid and dex. Considering VRD is what most doctors give to people to get them into remission BEFORE a transplant, I'm sure it will get me there. I need to ask BB about the biology behind the difference of the two paths:

Path 1: VRD to achieve remission, then a single transplant to consolidate the gains, ends in no traces of the disease with maintenance therapy.

Path 2: VTD-PACE to reduce cancer, then two transplants, then consolidation therapy, then some amount of VRD to get to remission extending into maintenance therapy, ends in no traces of the disease with maintenance therapy.

I guess what I'm saying is, does the manner in which remission achieved impact biology and if so, how and why? I've always rationalized that I would rather achieve remission early through the powerful "kitchen sink" stuff that BB throws at me, and then have the traditional maintenance as "icing on the cake" so to speak. But it seems I'm not going to get there. It seems increasingly likely that I will need VRD to achieve complete remission (I still refuse to accept the notion that I might not achieve it at all) and if that's the case, why would it not have been better to use VRD pre-transplant followed by double-transplant? In other words, why isn't induction longer under Total Therapy? This is a series of questions that likely has a very long and clinical answer, but I am eager for it. I'll have to ask BB when I see him on the 13th of July. SH's comments. Bear in mind, he does not approve of BB's protocol. He thinks it is overkill (both from a chemo standpoint and from a testing standpoint) and that the quality of life caused by the treatment is a real problem. Now, I've made it through pretty damn well, but SH was still saying things like "you have to consider the possibility of leukemia from all this chemo later in life." BB has 15 years of data and said that he's not seen a single episode of late-term leukemia from total therapy, so I'm not worried about that.


* I have achieved very good partial response. Without seeing one of the bone marrows, it's impossible for SH to say, but I am "probably in remission." We discussed the nature of remission. In some patients with Chronic Myelogenous Leukemia, they might live to be 85 and die of something else, but there could be leukemic cells in their marrow. Are they in remission (prior to their death, of course)? If not, does it matter? It becomes an intellectual exercise, SH says. I told SH I would feel better about the intellectual exercise if the preponderance of the medical community no longer felt that Myeloma killed people within five years. SH conceded my point.

* In SH's opinion, all the testing is overkill. He almost did a spit take (but he wasn't drinking anything) when I told him I'd had six bone marrows. There is no need for this testing at this point, in his opinion. Watch the M-spike. If it starts going up, I'm no longer in remission. From my standpoint, that's not good enough. I think there is value in the data and it could explain why the M-spike has plateaued. I do think on the margin BB does more testing than is probably necessary, and I may yet veto the FNA with this in mind.

SH is a "control the disease" kind of guy. When I told him that I was won over by BB's data, he said "okay, so you're a believer, then." I was mildly put off by that, actually, but I do see his point: until a double-blind study is done, all that we know is that there is a subset of patients for whom total therapy works very well, and we don't know if they'd have done just as well with a much less toxic regime.

I've been through this logic before: the risk of late-term leukemia is very low, and I'm through 75%+ of the main brunt of treatment with almost no side effects (toes are still tingling a smidge so I'm not going back on the thalidomide until my alpha liopic acid shows up in the mail). I don't care if I could have been cured with something less toxic so long as I am cured.

Anyhow, the bottom line is this: I still have the disease. I am hopeful that the next round of chemo will clobber it some more, and if that doesn't get me into remission, then surely at some point the VRD in maintenance will. If I get a satisfactory answer from BB on the big question I outline above, I may even feel good about it. Right now, I'm still rather upset that I don't seem to be improving any further.

At some point, I will need to draw the line on my treatment and return to life. I had hoped that this would be AFTER I no longer have any trace of the disease. It is looking increasingly as though that won't be an option.


  1. Boy, do we ever understand your frustration!!! We have followed the same protocol as you here in Denver under a doctor who trained and actually co-authored some of the many studies on MM with BB. Jon had his 2 transplants 2 years ago, and M Spike still hovers around 0.2. We have been as low as <0.1, but it seems to bounce a bit. He still gets regular Velcade, Revlimid and Dex, although the Velcade is only every 3rd month now. We may just be in that group that never quite reach total CR. Our doctor points out one kind of comforting fact: the slower it is to die, the slower it returns.....
    We also had some different opinions about treatment, but Jon is young and hearty so we felt a tough fight was in him and would yield the best resutls... You just have to believe, take a stand and go for it!!! We will ALL beat this and dance and drink somewhere in time to celebrate!

  2. My insurance would not even cover the expense that BB's protocol requires. So that was not an option for me. It would be interesting to compare costs. I did it the old fashion way, 9 months of therapy and then auto transplant. Achieved stringent complete response. I am just about to the one year chemo/steriods for 12 mos. has been awesome...but the odds are still that the beast will be back. I know the stats that if your achieve sCR and it comes back soon, outcome is actually worse long term. Just hoping I am buying enough time until they find a cure. So AGREE with you in that you have to put cancer aside...and go on living...or you waste the day. I really look forward to your updates...they are so real!

  3. Keep fighting and most importantly, keep living! You WILL get there. We continue to keep you, Jill and the kiddies in our thoughts and hearts! BTW, was quite impressed with your culinary skills! I love to cook as well, but I can't come close to competing with your talent...we'll have to get together soon when we're in CA for a home cooked meal! I picked up a great cookbook recently from a favorite restaurant in Maui that has some awesome ideas in it! Big hugs and smiles coming your way...Love, Julie & Mike

  4. Nick,

    I think you've done amazingly well considering all that you've been through. I have no doubt you'll get that M-spike down to zero! You always succeed in everything you do.
    Nice helmet, by the way. It's a good look for you!

  5. Nick,
    Please don't lose sight of the tremendous progress you have made against this supposed "incurable" disease. As someone who has gone through both the "manage the disease" and "drive it into oblivion" approaches, all I can say is there is no definitive answer to how to treat MM. I think the Arkansas approach causes us, as patients, to focus unduly on every lab report as if it was a clear indicator of where the disease is headed. You and I both know that just isn't so. I remain quite confident the VRD will send you into remission. It worked quite well for me about a year ago as part of the manage disease approach--taking my IGGs from 5000 to 1600 in about 2 1/2 months, after which my doc took me off it. So three years should obliterate that cancer. Keep the faith my friend.

  6. Let me know if the ALA helps with your PN! I often describe treatment of MM as Let's Make a Deal! Door #1, Door #2, Door #3! Makes you crazy. You know BB has backed off a bit on the CR in the last couple of years and concedes that a PR is statistically as good? Of course it doesn't mean that you don't get disappointed if you don't get the brass ring! But stay focused on what the brass ring really is OK? Its kind of like when we ladies have babies and we want it without drugs. Some of us make it some of us don't and some of us have to have C-sections. We beat ourselves up until we realize that the important and only important thing is that we have a healthy baby and Mom at the end of the day. How we get there is irrelevant. So I say, WELL DONE NICK! You have done good! Long Live the PR!

    Lori Puente