[Mikey D]

Well then...where do i start. I was dx with MDS RARS Sideroblastic anemia in 1993 and was given 2-4 yrs to live with out a bone marrow transplant. At that time my hct was at 34. Platelet at 170 and white cell count normal. I have pure red cell dysplasia. I had my second opinion from one of the worlds foremost experts on this syndrome and he concurred with the dx. Many bone marrow test were taken and I (at least my Marrow) was sent around the world. My sisters and I were tested for a possible BMT and the results were not positive. So I declined the BMT and went traditional treatment. This meant procrit which had no effect. I then was entered into a phase 2 study for Amifostine in 1997-98. This to hard no effect on my counts and they started to slowly decline. I left my employment in 1999 as I was near transfusions levels and working was really tough on me and my family. That was a tough decision. After stopping work, my counts went up a bit though always under hct 30.

Fast forward to 2004 and I started on Aranesp. This worked just ok. My counts increased to 28-32 and I felt a little bit better. As time went on I needed to have an increase from 200 mcg every 2 weeks of Aranesp to 300 mcg every week and then an increase in 2010 to 500 mcg. weekly. The Doctor then stated that we could add Nupegen (sp) of the counts did not improve. My avg count had dropped to 28. Somewhere in the process i did oral chelation and my counts went up to around 33. I guess taking iron out of the equation made my Marrow work more efficiently.

I am currently running with a HCT consistently over 34 with counts over the last 3 years that have at time approached 40. Still doing the Aranesp at 500 mcg but have added Indian herbs such as Turmeric, Cumin black pepper and Boswellia in a single pill. This folks was because of a suggestion by my Hematologist to try it. He stated that people in India do not have the rate of MDS that other developed countries experience. So here i am. Still alive and kicking and feeling so much better than i was before. Long term survivor who had a horrible prognosis. I am not cured. I still have MDS and my platelet count has lowered a bit. I am here. Mike in upstate NY.
Thanks for all you do and your time. I am now 57 turning 58 in September. HCT 37 platelets 145 white cells good.