Revlimid wasn't going to touch this. Revlimid a Thalidomide type of treatment was ordered and ready to go but the oncologist changed her mind. Vidazza was tried for three months from December to March and then a bone marrow biopsy was done. This biopsy showed that the Vidazza was not making a difference. No other treatments available. A bone marrow transplant would involve a one month in hospital stay to destroy everything in the bone marrow before implanting the donor marrow. Because in MDS the bone marrow would still be dysfunctional it would return to it's old habits and fail. Also generally bone marrow transplants are not given to older people over 60 because it doesn't last very long. In Leukemia the bone marrow would be able to replenish the blood cells without this permanent dysfunctionality of MDS so a bone marrow transplant would work better in this case.
You are right in saying there are so many sub groups of MDS with so many variations.
Life expextancy prediction is definitely a stab in the dark. I told my wife to relax and live each day to the max.
I think the low platelets are the big concern because a small bleed anywhere in the body could become a major problem without really detecting it right away. The two transfusions of platelets per week are keeping her stable at an average of 11. As long as it stays that way we are still in the ball game. I think that platelet transfusions can go on for a long time. She also has a port which makes it so much easier and also the hospital is only 6 blocks up the road and they are just fantastic in accomodating us.
The following web site explains MDS in a very good way:
http://www.cancer.gov/cancertopics/p...lastic/Patient