Thread: One year of MDS
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Old Mon Jun 6, 2011, 11:18 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Clinical Trials

Hey Freedom!

Birgitta mentioned Promacta and Nplate, both of which are used to increase platelet production. I don't know how the Canadian health care system feels about those drugs, but there's a clinical trial for Promacta in MDS at the US National Institutes of Health in Maryland. The travel might be a challenge, but the treatment involves no cost otherwise.

There's another drug being investigated in high risk MDS that has shown some promise called ON 01910.Na. It has a number instead of a name because it's so new. There are several clinical trials for it, including this one.

I imagine you can find other trials for both on clinicaltrials.gov -- or on the Canadian equivalent website.

Someone mentioned "mini-transplants," also known as "reduced-intensity transplants." More and more folks in there 60s are having these, though your wife's other health issues would have to be carefully weighed.

I certainly can empathize with your mutual decision not to undertake a lot of treatments that actually reduce quality of life. But it's good to know about all the options while making that decision. And believe me, the folks on marrowforums, collectively, have looked at a LOT of options!

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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