Quote:
Originally Posted by PattiDean
Where do I find "Clinical Trials?"
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Hey Patti!
You can find the story about Don and Sally's experience with the NIH trial of Promacta
here and
here.
RAEB-T is a tough diagnosis, but it's important not to get hung up on the years (or months) or survival you find reading about MDS online. Much of what you read will be based on the experience of patients before there were any treatments for MDS other then transfusions ("supportive care.")
Vidaza was approved for MDS in 2004; Revlimid, in 2005; Dacogen, in 2006 -- so there really hasn't been enough time to develop good data on prognosis and life expectancy since these therapies were introduced.
Aside from that, the course of MDS is highly variable from individual to individual, so looking at averages isn't all that useful.
It's likely to be a rough ride, because of the side effects of the drugs and Dean's level of fatigue, but it is definitely not hopeless.
Good luck with the first treatment on Monday.
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