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Hey Cindy!
Sorry to hear about Ron's situation. And please accept my apology for not knowing the details of his MDS. Is it mostly a platelet problem, or is he getting RBCs as well. The reason I ask is that there's a trial of Promacta (eltrombopag) at NIH in Bethesda for folks with platelet problems.
I take it the SCT is still on hold?
They run a bunch of MDS trials at NIH; it might be worth giving Barbara Weinstein a call (301-594-4180) or email (weinsbar@mail.nih.gov). She's the research nurse who handles MDS trials and would have a good idea of what they are running that might help with Ron's situation.
Take Care!
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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