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.