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Old Thu May 19, 2016, 09:26 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Quote:
Originally Posted by DanL View Post
My guess would be that you would be doing a reduced intensity conditioning - maybe follow with some vidaza to help it along. I think that mausmish did this for 12 months afterwards because of her risk status. I took 6 months of vidaza after i relapsed 6 months after transplant.

I am wondering if you might want a little bit of gvhd to get a little bit of the graft versus mds effect. I know that gvhd can be a bit of a pain, but I am pretty sure that it has been responsible for continuing to fight off the disease. GVHD is definitely one of the morbidities to look out for, but relapse is usually really bad.

Dan
Dan,

As usual, your extensive research has allowed you to deduce exactly the struggle that I see going on in Dr. Horwitz's mind. My TERT mutation and short telomeres have him worried that I might have a more fragile than usual marrow, which make him lean toward reduced intensity conditioning.

On the other hand, he knows, and his former NIH colleagues are reminding him that a fully myeloablative conditioning regimen is a better guarantee of relapse-free survival.

That's why I think he will wait to see how the induction chemo goes, before making a decision.

One thing I haven't discussed with either Horwitz or NIH is whether, once we are done with induction, and waiting for my blood system to rebuild, we should add Danazol to the list of meds.

We know I have the mutation and short telomeres. We know I respond to Danazol. So, why not try to help the recovery process along with a little Danazol boost?

The counter arguments I see are that no one has ever done it and that Danazol seems to take months rather than weeks to work its magic.

Still, I am going to bring it up.

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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