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#1
Fri Aug 19, 2011, 08:19 PM
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Sapacitabine locally
We really do have to be our own advocate or rather my husband's advocate. After going to Houston and getting everything set up to begin clinical trial of Sapacitabine, I got online and found the same trial is being offered at Emory (just one hour from our house). So they were able to transfer everything from MDAA to Emory. Thank you, Lord.
If this trial doesn't work, we may very well end up at MDAA, but for now we'll be able to stay at home. The last few weeks have really been a rollercoaster ride. Linda
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying. 
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#2
Fri Aug 19, 2011, 09:37 PM
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That'll make a big difference, Linda. How good that you checked.
Did they simply not think to tell you that you could be in the trial closer to home? If nobody is in charge of checking such things (other than the patients themselves) then that's a problem they ought to address.
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#4
Fri Aug 26, 2011, 08:36 PM
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Hey Linda!
I'm really glad that this worked out for you guys. I hope this new drug will fix Al up so much that we'll all be signing up for it! 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
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