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Old Fri Oct 7, 2011, 09:15 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
One more for Danazol

Hi y'all!

I've just been invited up to NIH for screening for the Danazol trial. But I have MDS instead of AA and my mutation is in TERT instead of TERC.

I look forward to comparing notes about the trial, assuming I make it through the screening.

I'm not too worried about growing a beard, since I've had one since Junior year in High School, but it would be nice if the Danazol put the hair back on the top of my head!

I've been reading some of the NIH journal articles on telomeres and wrote up what I found out so far here.

Let me know if you run across anything interesting. I see some of you have had family members tested. I was wondering if that's something I need to do. The articles make it pretty clear that the TERC and TERT mutations can run in families.

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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