After getting knocked about a bit, I think I have found my sea-legs a bit and am going about the process of speaking to people that have specifically studied this MYC gene and may have thoughts on how to target it with specific maintenance drugs. Of course my hope and expectation is to still handle all of this through UAMS but it can't hurt to be informed and I feel like BB is operating from the gut versus from a pool of data so it also can't hurt for me to understand how other's guts would lead them.
It may be challenging to do so. Consider the fact, for example, that I remain in complete remission. I can't send anybody slides of bone marrow because it won't show any myeloma cells. I can't send anybody blood because it will be normal. Nobody else really uses MRIs the way UAMS does; if I sent them an MRI it would show a few small inactive lesions and some heterogenous marrow which is to be expected from myeloablative therapy.
I think there are probably a limited number of doctors who would even consider ANY kind of maintenance for somebody in my condition, having concluded three years of VRD and retained remission that whole time.
Nonetheless, I've begun looking at which doctors have looked at the MYC gene -- either with respect to Myeloma or even with respect to other blood cancers. The people whom I'm hoping to speak with include:
- KA at Dana Farber. He's done work on MYC and he's a leader with novel agents. Ironically, friend and fellow blogger GP was incredibly kind and sent a brief summary of my situation to KA's partner, PR. He responded immediately by saying I should be speaking to somebody else outside Dana Farber. : \ Oh well, I'm still intending to do my phone consult with KA next Tuesday. But this leads us to...
- RF at Mayo Scottsdale. He evidently has done extensive research on MYC and is considered the leading expert on this gene (or at least one of them). He's done presentations with BB on treatment of high risk MM before so they at least know each other. I've sent an email to him asking to set up a consult, but haven't heard anything as yet.
- BD at Cedars Sinai. A luminary researcher, he's done work on MYC and probably understands this disease as well as just about anybody. I have a call into him to schedule a phone consult, although I could also drop by since he's local.
- SF at City of Hope. He's got a tremendous amount of experience across different types of blood cancers and has done work on MYC. He also understands BB's protcol. And he's a great person. And close to home. So that checks a lot of boxes.
We'll see if I can speak with at least two of these people -- I'm particularly keen on speaking with RF. Then we'll have some idea of what to throw into the mix along with Velcade if the gene array indicates that I still have this MYC gene running amok.
If I don't, then this is all much ado about no-- well, much ado about very little. I'll still need to stay on Velcade until the lesions resolve even if I don't have the gene problems. But that will be a bump in the road versus a majorly disconcert event.
Fingers crossed for good results on Friday. BJ sent me a little text, since we had trouble getting cells from one of the bone marrow sites, that the results are "going to be good...or it wouldn't be this hard" (to collect the cels, I hope). I presume that at least means that if I had myeloma cells the marrow would be more substantive. This is part of what we hope for, but really we want:
* No myeloma cells
* No myelodysplasia
* No over-expression of MYC
If we're good on all those fronts, then we return to our maintenance program with Velcade alone, most likely, and watch and wait for those little spine pits to resolve.
I shall keep you posted.
I must also say I am particularly touched, as always, by the emails, calls, texts and posts offering support, prayers, positive thoughts and intentions, and even humorous and insightful historical commentary on the evolution of certain conventions in grammar! :)
Wednesday, September 19, 2012
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