Hi GaryV
Like you I have not accepted any treatment except supportive therapy since dx May 2006. I have felt OK (no spleen enlargement) but during spring 2010 I needed blood transfusions (2 units) every week and my dysfuctional platelets were about 20.
My doctor persuaded me to try low dose Thalidomide and Prednisone for my fibrotic bone marrow June 2010. I was surprised and grateful when my platelets after 4 weeks started to increase (last count 76) and my HGB after 12 weeks increased so I have not had any transfusions for 8 weeks. No adverse effects when I take 4 caps Thalidomide รก 50 mg/week and Prednisone 5 mg/day.
Vidaza has showed better treatment results than Dacogen. In this study 67 % of the low risk patients were blood transfusion independent and 73 % platelet transfusion independent:
http://www.eventure-online.com/event...ongressId=3446
In this study they look at response rate:
Previous LD AraC treatment, bone marrow blasts > 15% and abnormal karyotype independently predicted lower response rates.
Complex karyotype predicted shorter responses.
Low Performance status, intermediate and poor risk cytogenetics, presence of circulating blasts and RBC transfusion dependency ≥ 4 units/8 weeks independently predicted poorer overall survival.
http://www.ncbi.nlm.nih.gov/pubmed/20940414
You could try treatment perhaps with Vidaza - like Karen - that is the first line drug in MDS.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent (142 units of packed red blood cells), Desferal and Exjade for iron overload, Neupogen 3 injections/week for low WBCs, Thalidomide and Prednisone for bone marrow fibrosis, asymptomatic