Monday, July 13, 2009

Mixed news, mostly good, I suppose...

Okay. We spent a LONG time in the clinic today, but ultimately spent a good hour or so with BB and learned some important things. On balance, this was a good checkup, although I am not in CR and we have established that CR is an important goal, not just something that doesn't matter.

1. MY BONE MARROW IS NOW NORMAL. That's the bulk of the good news. There's no abnormality in the marrow any more. Plasma cells, which used to be 70%-80% of the marrow, are now 2-3%. The plasma cells that they examined have no abnormalities, unlike the previous marrow exam on May 19.

2. My M-spike is 0.5 according to the clinic here, which doesn't surprise me too much as it's always higher here than in Los Angeles. However I was at 0.4 when I left, and am now 0.5 despite bridging. BB told me very specifically not to be concerned with this fluctuation. It's a low level of M-protein, there are fluctuations from test to test, the test itself has a margin of error, etc.

3. My PET scan shows no focal lesions, and 100+ areas of involvement still. They are generally unchanged from the last scan, although some are beginning to reduce in size (e.g. one went from 1.6 cm in size to 1.5 cm in size; the largest one went from 3 cm in size to 2.8-2.9 cm in size, etc.)

4. My MRI shows essentially the same level of involvement as last time, on or around May 19th. There is involvement in about sixteen vertebrae, which explains the pain in my back. Nothing is getting any worse, on the margin things may be improving but it's very slow improvement.

5. There are no results back from the Fine Needle Aspiration yet.

6. My uric acid was mildly elevated on the 7/8 lab draw (it was 8.2). The nurse saw this and had me draw more blood today, which wasn't back yet when BB saw me. BB asked her why she bothered. She said "his uric acid was 8.2." BB said "that's because he and I had dinner last night!" For the record, I had two small crabcakes, a 10 oz filet, a small amount of rice, and two glasses of white wine.

I asked BB the questions from the other day. The salient answers are:

* There is no biological difference in attaining CR during transplant versus during consolidation versus during maintenance

* There is a definite connection between achieving CR and positive long-term prognosis. In other words, if I don't achieve CR, I have a lower likelihood of a positive long-term prognosis. This connection is not as strong as the connection between LOSING CR and long-term prognosis. If one achieve CR and then loses it, one is pretty much screwed. This is a real problem with high-risk disease. Sustaining remission in low-risk disease is easier (about 85%-90% of people are able to do so versus more like 20%-30% in high-risk disease). I have low-risk disease, for those who may not recall. I can get more specific in this area but it has to do with hard-core statistics and terms like multivariate Cox regressions, hazard rates and P-tests (the other kind of P-test that doesn't involve a jug).

* I have been in therapy for four and a half months. The MEDIAN point of time to 99% elimination of M-protein among Total Therapy 3 participants with low-risk disease is about six months. That means that at start of therapy plus six months, the 50th person out of 100 in the TT3 population eliminated 99% of M-protein. TT3 is essentially the standard (as opposed to the lite) arm of TT4, in which I am enrolled. In addition to being in the lite arm, I had a quick recovery from my transplants. Thus, I have received both transplants in this period of time, whereas more people in TT3 hadn't received their second transplant at six months. On the margin, this isn't great -- my 4.5 months would translate to something longer than 6 months adjusting for the nature of the treatment. Having said that, the median is just one number among many -- as Stephen Jay Gould said, "the median is not the message." A full understanding of this comment may or may not require knowledge of Mr. Gould but does require familiarity with Marshall McLuhan in order to get the pun. Which isn't really worth the time.

* If one has low-risk disease and one IS going to achieve CR, one will generally do so within 8-12 months from the onset of treatment.

* There is no way to tell how much of what is going on in me is from the transplants versus from consolidation treatment, so it will be too early to see what happens after one cycle of consolidation. BB will assess me after I've gone through consolidation and we will take it from there. He doesn't yet see a reason to be alarmed. He reiterated that for 95% of people there will be no difference in outcome between the lite and standard arms. Obviously, I don't want to be in that 5% but he didn't think there was any reason to be concerned at this point.

I threw in a bonus question about my back, asking how long it would take for the lesions to go away and for the fractures to heal. He said about eight and a half months, and then winked and kicked me in the foot, because that degree of precision is impossible. But it does give me an indication of when I can expect to see full alleviation of the symptoms in my back. Hopefully I can get back to some activity (i.e. golf) long before then. I need to make a mental note to ask him how much activity my back can tolerate.

Well...that's about it. The bottom line is clear: I MUST ACHIEVE COMPLETE REMISSION.

Nothing else is an option.

I still believe I will get there, but it is hard sometimes. What should be spectacularly good news about my bone marrow has been completely trumped by the presence of that M-spike.

I was just starting to come out of my funk when we were watching the show Intervention on A&E. It documents people that are addicted and efforts on the part of their family and friends to get them to stop. Tonight's episode focused on a highly-functioning alcoholic (meaning he was an alcoholic but it didn't affect his ability to do his job, live his life, etc.) and it was very difficult to get him to seek treatment. His two young children had to say they'd never see him again, etc. and they finally forced him.

He was sober for 80 days in treatment when he was diagnosed with advanced esophogeal cancer. He was dead three weeks later. The show ended with his nine year old son crying and saying at least his dad died sober.

This wasn't what I needed to see this evening.

Anyhow...tomorrow I start consolidation. Dex, Thalidomide, Velcade, and 75% of the four nasty chemo agents from induction. I'll be hooked up to that irritating pump that will administer these four agents (Cisplatin, Adriamycin, Cyclophosmomide and Etoposide) over a 24 hour period, and I'll go back in for four days to have it changed. I'll also have daily Lovinox injections to ensure that I don't get blod clots from the thalidomide and dex, and then once I become Neutropenic (hopefully the last time ever in my life) I will get those lovely Neupogen injections again. Plus I'll take supportive meds (Levaquin, Fluconazole, Acyclovir, Protonix and the two anti-constipation agents which I will CERTAINLY take to avoid what happened last time).

One more unto the breach, dear friends.

3 comments:

  1. The treatment can be overwhelming in itself ... all the best to you.

    Good luck with the new regiment.

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  2. Sounds good Nick. I have already decided you ARE in CR. Its done. You are there! Best, Lori

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