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Old Fri Aug 12, 2011, 07:35 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Linda!

I think it's really important to understand that, with this disease, there is no right decision. And there is no wrong decision.

The only right decision is to keep fighting. And the only wrong decision is to quit.

You're fighting; that's the right decision.

I'm reading the same numbers as Dan; the Estybon response rates are higher. But MDS is such a strange disease; it could be that the variety Al happens to have would respond better to Sapacitabine. There is just no way to know. You just have to go with one, and, if it doesn't work, try the other. That's probably why the Houston docs are suggesting trying the more convenient one first.

It might be worth asking them about the expected side effects of the two drugs. The early results from Estybon say there were no hematological side effects -- that is, no reduced counts. But the Sapacitabine results do mention some neutropenia and thrombocytopenia. There's no data in the abstract about how common or severe these were. The docs in Houston should be able to tell you what they have seen in real life. With Al's platelets at 22,000, you don't want to see them dropping further if you can avoid it.

I know you've already had an heck of a fight with your insurer to authorize Anderson, so you might not be interested in other locations, but the Phase III trial of Estybon that they are doing in Houston is also being done at several locations in Florida, as well as in some other states (not in Georgia, however). You can find the list here on clinicaltrials.gov. I'm pretty sure it's the right trial.

Believe me, there's no wrong decision here, just tough decisions.

Take care and good luck!

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

Last edited by Greg H : Fri Aug 12, 2011 at 07:35 PM. Reason: Forgot to subscribe
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