After a snafu with BD's office, I managed to have a brief consult with him. It was quick, but it was very valuable. Here's what I learned:
1. He thinks that given my age, BB's protocol is a very good choice.
2. He is not terribly concerned with long-term leukemia as he believes the doses of cytoxin and etoposide are low and long-term leukemia is dose and schedule dependent.
3. He is not terribly concerned that the marrow will be unable to support normal blood counts as people coming out of BB's protocol have done well in this regard. Having said that, he did suggest I harvest enough stem cells for 3 transplants (and maybe I'll do 4 if possible).
4. He believes thalidomide is sufficiently different from Revlamid so as to require both agents in the BB "kitchen sink" approach.
5. He said the key to avoiding neuropathy with thalidomide is immediate dose reduction and taking a very proactive approach toward recognizing it and alerting the doctor(s) about it. Same deal with Velcade, although thalidomide neuropathy is much more serious (less painful but permanent)
6. He said that some poor risk GEP patterns have been linked to Chromosome 1 so BB and his folks are studying it, but just because I have some odd Chromosome 1 issues doesn't mean I am necessarily high risk. He noted that the lack of bad markers with 4;14, Chromosome 13 and 17b (a new one! thought I was done learning!) are all good factors, as is the fact that I have hyperdiploid.
7. He said that "we aren't quite there yet" even with all the novel agents in the pipeline, which again points me in the direction of the BB protocol.
So more or less a pretty strong statement of support for my choice of the BB method.
I'm gearing up. Cancer is gonna be sorry it knocked on my door -- I'm going to beat the crap out of it mercilessly!!!
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If there's anyone out there who knows how to
ReplyDelete"open up a can of WHOOP-ASS" on MM, it's BB.
C is in for a butt kicking. Thoughts are prayers are with you.
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