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Old Fri Aug 12, 2011, 02:30 PM
Al's Wife Al's Wife is offline
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Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Need help - Sapacitabine or Estybon or help

Our news this week was not the result we were hoping for. After fighting with our medicare advantage insurance company for two months and trying to seek other treatment options (finally filing a complaint with Medicare), we were approved for treatment at M. D. Anderson Cancer Center. Al had his bone marrow on Monday and it showed 10% blasts, platelets 22,000, and a progression from RCMD-1 to high risk. They are now talking to us about stem cell transplant not too far down the road. To say we are devastated is putting it mildly. We had hoped that with him not requiring any transfusions so far and his numbers being stable, we were in a good place. But now things seem to be moving rapidly, and in the wrong direction.
We were given three options at M. D. Anderson for now. Because we would have to stay in Houston pretty much the whole time if we choose the Estybon (it is IV), the doctors recommended he go on Sapacitabine, which is in pill form and we could come back home after the first month, and just go back every few weeks after that, I think.
But I want him to have what is BEST, even if it means moving to Houston. Does anyone have any knowledge of how successful either of these trials have been? I've tried reading online and can't seem to grasp the findings so far.
As I said above, his platelets are the main problem right now. He has complex cytogenetics, however. The doctors have told us that his other blood lines will go down - the wbc and rbc. However right now they are holding close to normal.
If anyone has ANY knowledge or opinion about the best drug for him, I would really appreciate your input.
We considered (and were approved) to go to NIH for the Promacta trial but when his blasts increased it disqualified him for that trial.
Thanks for your help.
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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