Revlimid
Hey Bergit!
Like Dan, I figure there's a transplant out there for me at some point, but I'm also trying to hold that off for a while.
I spoke with my local Hematologist last week about options if the IST doesn't work for me and we talked a bit about Revlimid. He's very familiar with the drug because it's used for multiple myeloma, and said it was generally well tolerated by his patients -- that is, the side effects aren't too bad, in his experience. It only works for about quarter of non-5q folks overall, as I understand it. But it seems to work a bit better in folks who have mostly red cell problems.
I might be likely to try it if the IST doesn't work and my transfusion interval becomes intolerable. Even though my doc has had good success with Vidaza, I wouldn't do that unless I progressed to high-risk and was ready for transplant. My transplant doc (assuming I stay with the same one) likes to use Vidaza pre-transplant to try to get rid of the cytogenetic abnormalities before starting the chemo.
She also discouraged me from doing ATG, because it's used in the SCT process. That's one of the reasons I was interested in the Campath trial. While a number of studies have found hypocellular marrow to be an indicator for a response to IST, NIH's research has not. They find the key factors are age (under 60 years) and the presence of the HLA-DR15 allele. So it might be worth a shot if you have DR15, despite the hypercellular marrow. Mine is normocellular.
I'm currently a non-responder to Campath, so I'm certainly not a cheerleader for it. But one of the other things that makes it attractive compared to ATG is that ATG works best when followed up with cyclosporine, and that drug brings with it a lot of issues. Campath knocks down the T-Cells longer and more completely than ATG, making it possible to avoid cyclosporine. On the other hand, the trial I am in can offer cyclosporine to folks who have responded and then relapsed.
Catch you later!
Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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