Wednesday, January 21, 2009

BD's consult

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!!!

Side effect run down, and some thanks

Not in that order.

I want to thank those who are following my blog and those who are taking the time to post comments and/or email me. I've been contacted by people from all over the world, some of whom have myeloma, some of whom have relatives with it, some of whom are dealing with other cancers or have relatives that are. Every one of these people, and of course our family and friends following this blog, is special to me -- they have been quick to share, encourage, and support and it does make a difference. Thank you all very much.

I have more good days than bad, but I'm trying to be pretty unvarnished here so if I complain now and then, please understand I'm just being true to what I'm feeling.

Now then.

The side-effect derby. I'm trying to get this all nailed so I can speak with BB about them individually. I'm also only including the side-effects I'm most concerned about (i.e. nausea and hairloss are not that big a deal, but going deaf is).

Velcade - peripheral neuropathy, seems to be dose-dependent and typically goes away

Thalidomide - very long-term and/or permanent peripheral neuropathy that takes years to heal if ever

Dex - cataracts, but that's not the end of the world

Cisplatin - hearing loss and kidney failure (wheeeeee!!!!)

Doxyrubicin - very bad cardio effects, particularly once cumulative dose rises above 550 mg/m2

Cytoxin - late-term acute leukemia (wheeeee--uuuugh I'm dead)

Etoposide - late-term acute leukemia

Revlimid - excess toejam and bellybutton lint

Okay, so I'm doing my best to keep the humor up. Revlimid has no such side effect that I'm aware of. 5% chance of peripheral neuropathy seems pretty manageable.

I will post more after my consult with BD, which I'm anticipating to be a barrel of laughs. : \