← Return to High Risk Myelodysplastic Syndrome: What to Expect?

Discussion
Comment receiving replies
Profile picture for janetlen @janetlen

@ray666 MDS is incurable. When I was taking Revlimid, my HGB went into high normal readings. Other values were low, but some think that is partial remission. It isn't. The drugs/transfusions prolong our lives. It is Palliative care. Yes I will be on some combo the rest of my life unless I have a Bone Marrow Transplant which is true for all of us. With BMT there are other issues. It sounds like your partner will have infusions, which is different than the oral chemo. Revlimid was initially 3 weeks on with 1 week off; dosage and duration changed over time due to effect ont PLT and Neut.

Jump to this post


Replies to "@ray666 MDS is incurable. When I was taking Revlimid, my HGB went into high normal readings...."

Hi, Janet

I've had to learn not to be rattled by that word "incurable." I have chronic idiopathic axonal polyneuropathy, which is also incurable. What my partner is wrestling with right now is finding an acceptable balance point between what therapies are critical if she wishes to preserve her life and how much of her life will she be able to retain once she has settled upon a therapeutic path.

Thank you for your comments! They are deeply appreciated.

Best wishes,
Ray