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Originally Posted by beverly
Also am interested in reading experiences with CAMPATH and with telomeres. Thank you in advance! Beverly and David
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Hi Beverly and David!
I'd be happy to chat within you about campath and telomeres, if I can be of help. The blog I put together on my two clinical trials at NIH may be of use. (Link below.)
I was at NIH a week or so ago and heard they are writing a new trial for Danazol for folks with short telomeres that will start with a lower initial dose, because it appears just as effectively as the high dose I had.
Is David classified as higher risk? Might I ask his age? Does he have Trisomy 8, or other reasons to think his MDS might be autoimmune in nature?
Feel free to email me directly if you prefer, though conversations on the forum do have the advantage of leaving a trail of breadcrumbs that others can follow in the future.
Best of luck to you!
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