Hi Alan. Thanks for your well wishes and yes, all is well. I do not need chemo, thank goodness. I have switched to an MDS specialist at M.D. Anderson and had a second BMB which confirmed my original dx and mutation. My treatment remains the same – – a blood draw every three weeks and an Aranesp injection if my Hgb drops below 10 ( with my previous doctor I got Aranesp when Hgb was below 11). My Hgb has been trending downward and is in the nine’s. They increased my Aranesp dosage so we will see if that will push me back into the 10s. My prognosis remains excellent with little likelihood that my low risk will move into a higher risk but that is because of my specific mutation. I know that you have not had the genetic testing but many cases of MDS with ring sideroblast are associated with the mutation that I have, SF3B1 so hopefully that is comforting news for you. I do not need chemo now and it is not likely that I will ever need chemo, according to my doctor. He did say that eventually I may need transfusions. I’m certainly hoping to avoid that because of my high ferritin levels So hopefully the Aranesp will continue to do the job. Long story why I was asking about Vidaza and Dacogen but the good news is that I don’t need it. Hope all is well with you!
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