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Myelodysplastic Syndrome (MDS): Did you have stem cell transplant?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 27 8:12am | Replies (54)Comment receiving replies
Is there nobody with MDS out there? I really need to contact someone who has been treated with Vidaza (Azacitidine) What about treatment for iron overload with Deferasirox? I'm afraid to take these treatments because I only have a problem with my red blood cells, but both of these meds will reduce my white cell count as well as my platelets. I'm afraid that the meds will be worse than the illness.
Replies to "Is there nobody with MDS out there? I really need to contact someone who has been..."
I have MDS and was being treated with Azacitidine. I tolerated the medication very well, and did well until my wbc count kept dropping. The treatment is on hold, and I am getting ready for transplant in 1-2 months.
My husband was diagnosed with MDS in November 2023. He was referred for stem cell transplant which we are still waiting for. He started treatment with vidaza in December and has completed six cycles. His blood numbers were extremely low during the first four months of treatment and he was transfusion dependent for at least two months. Venetoclax was added to the treatment regime for the fifth and sixth cycles and his blood numbers have improved enough so he hasn’t needed transfusions in six weeks. It has been a very challenging time and we hope to move forward to stem cell transplant and its potential for cure very soon.
Connect
@hklass, here a few different discussions on Connect that were started on different MDS subjects:
- https://connect.mayoclinic.org/discussion/mds/
- https://connect.mayoclinic.org/discussion/myelodysplasia-and-skin-itching/
- https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/