Hi Janet & Lindsay
I was dx initially in 2006 with refractory anemia with ringed sideroblasts. RARS. Been transfusion dependent since 2009. I have less than 2% Blasts. I’ve had 7 Bone Marrow Biopsies and results have been pretty much the same. The last BMB I had was done in Interventional Radiology which I highly recommend if that is available. Previous BMB’s were awful for the most part. Anyway I’ve been on Accutane, Aranesp, Revlimid, Vidaza, Reblozyl, Dacogen and now I am on Rytelo. In 2010 Revlimid worked for about 6 months then stopped. None of the others worked or the side effects made me stop.
Medicare and my supplemental are covering the infusions. I’ve had two so far, the infusion takes 5 hours. I will continue for at least 6 months. If not working after 6 months will stop. So far side effects are fatigue, not too bad. I’ve been fortunate so far, at first I thought I would only survive 5 years and here I am 18 years later. I have many antibodies in my blood so my blood bank is constantly looking for blood for me. I have terrific nurses who take care of me who have become my friends so transfusions aren’t so bad. I do have too much iron in my body for which I take Jadenu.
If you have any further questions let me know. My email is fmb6@comcast.net. Good luck to you in your MDS Journey!
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