[knstone]

Hi Birgitta and Neil,
Glad you are on thalidomide Birgitta, it worked very good for me-increasing all counts for 30+ months. My doctor in Cincinnati has had good success with thalidomide even thought it is not "in favor" with most doctors in the US. We think it probably saved me in mid 2009 as restarting it caused my very low blood counts to increase and allow the use of Dacogen.

Neil, I don't know anyone else on my current 3 drug combo. Doctors at the Cleveland Clinic suggested the "low dose" dacogen to me in May of 2009, they also suggested I might try Promacta (elthrombopag) for platelets at that time. While attending an AA/MDS patient conference in Cleveland at that time I met 2 other patients on the "low dose" dacogen who were under the care of Cleveland Clinic doctors. Since the thalidomide worked well for me earlier my local doctor suggested we continue with it, hence the 3 drug combo. Rather unusual but since it seems to be working we have not changed anything but the Dacogen dosage. We are trying to "fine tune" the Dacogen dosage so it might control the MDS/AML yet let the blood counts increase.

My current counts are still fairly low: Hgb mid 7's to 8's, ANC 150-350 (.15 to .35), platelets 20-35. Hgb was in the 9's when at a slightly lower dacogen dosage and we are trying to get the Hgb back to that level or higher.

MDS/AML is so different for each patient that treating it seems more like an "art" than a science at times.