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I wholeheartedly agree with all the above. My husband's platelet count has been below 15,000 for over a year and Amicar has worked great for him. He has had a couple of falls which resulted in bad bruising (blackeyes and big bruises) but he has not bled out, which I think we can thank the Amicar for. I know it doesn't work for everyone; but, thankfully, it has for him.
Don't give up, whatever you do. Ask if the doctors will switch you to Dacogen. My husband had no response from Vidaza when he had MDS diagnosed over three years ago. But when he transformed to AML last August, he decided to try Dacogen (even though the doctor only gave it a 2% chance of working) and he has remained stable. He has transfusions about once a month.
Be proactive. If I've learned nothing through this difficult time, it is you have to be your own advocate - or in my case - my husband's advocate.
Good luck and God bless.
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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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