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Old Thu Feb 3, 2011, 10:02 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Laura!

Since your Dad isn't interested in joining the forum yet, it's great that you are gathering information to help him. Fighting this disease benefits greatly from a team effort.

I'm kind of surprised, given what you've told us so far, that your Dad isn't already on Vidaza. It's become pretty much a standard frontline therapy for folks with higher-risk disease. Maybe the docs are worried that his platelets are so low already it would be problematic to give him Vidaza, since it often lowers platelets even further before it begins to work. It would be a good to understand why his docs haven't recommended it.

There's a similar drug called Dacogen that works pretty much the same way as Vidaza. And there are a number of clinical trials out there of new drugs and combinations of drugs for higher risk patients.

So there are some options; I would think your Dad's docs would be exploring them with him.

He's lucky to have a daughter working with him on this.

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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