[Bill F]

Hi run4peach1,

Thought I'd provide some details of my experiences with MDS as there are similarities with what your father has been experiencing, although I never had grossly elevated platelet counts. First of all I had received 42 units of packed red blood cells (prbcs) before my serum ferritin went over 1000 (1150 at that time) so I don't think it's likely that your father needs to be concerned just yet about chelation. I too had the Dacogen low-dose chemo treatment and similarly had very low counts following the first cycle; wbc 0.4 (ANC 50), hgb 7.5 and platelets 4000. These data were from a CBC 13 days after the last day of the five-day Dacogen cycle. This first cycle was at a dose of 20 mg/ square meter. Subsequent cycles were reduced to 15 mg / square meter. I fared much better with the dose reduction although my wbc and platelet counts still went fairly low, namely 0.7 and 8000 respectively. So the Dacogen hammered all my counts regularly and it was necessary to get platelets along with my prbcs. Fortunately, I only had a total of two platelet transfusions as one can become refractory rather quickly to transfused platelets. Now here's the good part, after four cycles of Dacogen, and an additional 14 units prbcs over five months, I was no longer in need of transfusions. So it's been almost two years that I've not required blood transfusions. Also note that I had the lowest response to Dacogen treatment, but hey, I had a response - many do not. The response categories are complete response, partial response, and hematological improvement with exacting criteria for same.

Hope and pray your father responds well to all treatment.