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.

Now...to 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.

Basically:

* 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.