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Old Fri Aug 19, 2011, 07:19 PM
Al's Wife Al's Wife is offline
Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
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, 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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Old Fri Aug 19, 2011, 08:37 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,497
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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Old Sat Aug 20, 2011, 07:47 AM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 457
That is wonderful news. Please keep us posted. Keep the faith!
God Bless,
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Old Fri Aug 26, 2011, 07:36 PM
Greg H Greg H is offline
Join Date: Sep 2010
Location: North Carolina
Posts: 660
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, 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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