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Patti,
You know we were told that since Al did not respond to Vidaza, he would not respond to Dacogen and they gave it less than 2% chance of working. But we figured 2% was better than 0%. Fortunately, the Dacogen has kept him stable for the last year and actually his numbers have been up the last month and he did not have to have a transfusion last month. He has needed monthly transfusions for the last year.
So if you decide not to do the clinical trial, you might consider trying Vidaza. And even though we've had 3 or 4 doctors tell us if you don't respond to one, you won't respond to the other, my husband and others on and off this forum are living proof that some people do respond to one and not the other.
I mean, if the doctors say there are no more options, why not try the Vidaza or perhaps Dacogen with another drug. I know they are doing some of that "out of the box" (Kirby's term - God rest his soul) thinking at some of the hospitals, where they will put you on two different drugs.
Good luck and God bless. We are praying for y'all.
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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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