[Sharon Sima]

My husband gets platelet infusions, his platelet count goes from about 10K to 6K, we consulted with a doc from Yale who runs clinical trials in MDS, of which my husband was not interested in doing, we also sought out another opinion from a very knowledgeable doc in MDS, their opinion was monitor and transfuse platelets when he gets below 10, my husbands doctor is pushing this off label med recommended by Mayo, off hand i cant remember the name of it, he doesn’t feel vidaza would be helpful, I do not feel this off label med with all its side effects would be the way to go, i’m not thrilled with his doctor, wasn’t from the beginning, we would use one of the other doctors we have seen but they are not close by and don’t have privileges at our local hospital, and when he was being monitored every week, now its every two weeks, and he doesn’t want to travel for treatment, he’s 76 and pretty well set in his ways, i have a medical background, and oversee his treatments, i feel he is doing fine, with the exception of low platelet counts, no side effects, quality of life is good for a person his age, he also has COPD and history of MI, but overall he is doing well, the rest of his labs are good, i feel leave well enough alone, but it was interesting to hear about the success of Vidaza in your case, I may ask for a second opinion with another doc in the practice where his doc is, i just wish i could feel comfortable with his doc, but with all the reading of past posts i have done, people have done well with platelet counts as low as 1K and one person stated his platelet count was 0, its a confusing disease and takes a lot of research for the right treatment, if his quality of life was poor, i would say go for it, but i hate the thought of opening Pandora’s box with side effects, i monitor him closely for bleeding and infections, a brain bleed would be harder to detect, but i am sure the symptoms would raise a red flag for me,
i really appreciate your time Dianna, and helpful info, if his platelet counts were anywhere near yours we would be doing back flips:)
have a good evening

[Author]

Posts