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Old Fri Jul 27, 2012, 10:54 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Beth!

Sorry to hear that Earl doesn't seem to be responding to the Dacogen. I'm with the others in suggesting that you keep on it for at least six months. I think that's generally considered standard of care.

But it also makes sense to play the "what-if" game and think about what the next step might be if we get to six or seven and things still aren't looking up.

So, there's transplant, which may not be possible because of age and comorbidities, right?

There's Vidaza, which works more or less in the same way as Dacogen. Some folks who don't respond to one do respond to the other, but, if Earl's had no response to Dacogen, that might be a tough call to make.

There's Revlimid, which has best success in folks with deletion 5q. I'm guessing Earl doesn't have deletion 5q, or he'd already be on Revlimid.

There's immunosuppression, which is generally used in lower risk folks. I'm not sure about its utility in higher risk folks. But it might be worth exploring, particularly if he has Trisomy 8 or hypocellular marrow.

[What do we know about Earl's chromosomes at this point?]

Next option is clinical trials, and there are a bunch of them out there, some trying agents like Promacta, some combining various drugs with Vidaza or Dacogen to try to increase effectiveness. Finding the right trial might be the ticket; it has definitely worked for some folks around here. The key is finding one you can reasonably get to that sounds like it fits Earl's disease profile.

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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