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Jil,
My husband has virtually no platelets and has never had what I consider active bleeding - nosebleeds, blood in his urine, etc. I think they call it adjusting to low platelets, which some people do and some people don't. I think I've read where some people have active bleeding around 20,000 so we've been lucky that Al has been able to function on these low counts.
But he did get large blood blisters in his mouth a couple of weeks ago. When the doctor saw them, he said that that is considered bleeding. Fortunately they cleared up with a drug called Amicar that he stays on now for low platelets. It is to help your blood clot. The doctor said if he started active bleeding to give him a couple of the pills while we are waiting for 911.
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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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