Hey Cheri!
This disease is consistently perplexing and discouraging,which is why it's so great to have this forum with folks like you in it -- so we can all learn from each other.
I'm sure other folks are going to chime in who know more than I do, but I had a couple of thoughts looking at your questions:
Quote:
Originally Posted by cheri
I have heard conflicting reports about which is harder to treat...de novo or secondary....the latest is that we think the MDS was there, had just switched to AML when discovered....( I had blood work due to recurring vertigo issues and major bruising was evident)
Induction Chemo put AML into remission, but underlying MDS resurfaced. I am not a candidate for BMT/SCT....Last BMB Jan 2011 indicated no AML had resurfaced...
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Everything I have read indicates that secondary MDS is tougher to treat, but I'm not sure that you have secondary MDS. That's generally used to describe MDS that crops up a few years after chemo or radiation therapy for some other condition. Since AML and MDS are kind of linked, I don't think your bout of AML is really "some other condition." It sounds like it's all kind of the same bone marrow failure, just sometimes better and sometimes worse, with different names applied to it. (On the other hand, if you had radiation or chemo from something else a few years ago and I am forgetting it, maybe you do have secondary MDS. I recall that you have been through the wringer.)
Quote:
Originally Posted by cheri
After 8 months of Vidaza, no appreciable results...(or did it keep AML at bay?)I can't resume because my counts are too low lately.....
. . .
I am anxious because my Dr seems confused as well and wants to do another BMB tomorrow...my last one was in January. I know that is the right thing before moving forward, but where to next? I don't have 5q- (or didn't last time--could that change?)
. . .
I don't have a copy of my lst BMB results...Dr just said I was low risk....should I get a copy of this one in the hopes that at least YOU all can help me decipher it?
So where to next? Revlimid? If I can get it at all? Other testing? (Got my copper tested, no results yet).... Dacogen? |
The BMB is definitely a good idea, because that will tell you the blast count and rule out progression to AML. I try to get a copy of everything, and we can certainly help you interpret your BMB results. It's definitely possible for new chromosomal abnormalities to crop up.
Some folks have responded to Dacogen after Vidaza didn't work, though, if you can't take Vidaza right now because of your counts, Dacogen may not be an option either. There are drugs being tested in combination with Vidaza, as well as some new drugs in the pipeline, like Estybon.
I think your thought that you need a consult with one of the top MDS docs -- like Dr. List -- is an excellent idea. There are folks much closer to you than Florida, however. There's Azra Raza and Lewis Silverman in NYC, the folks at Johns Hopkins, and the folks at NIH in MD. Neil often points folks to
this list of the MDS Centers of Excellence. I see a couple of docs in Philly on there. I'm not familiar with them, but others may have experience with Dr. Besa or Dr. Luger.
If I were in your shoes, I'd book an appointment with one of these experts. Since Vidaza doesn't seem to be working, and a BMB is out, a clinical trial may be your best bet, and the experts are going to have more knowledge of what's out there. The folks at NIH have been great about working with my local doc, and he was happy to draw on their expertise.
Take care!
Greg