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Living with MDS

Blood Cancers & Disorders | Last Active: 6 days ago | Replies (81)

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@tjakusz

I was very fortunate. I was diagnosed with MDS in 2019 and only needed one transfusion up diagnosis. For the next 3 1/2 years, I needed occasional arensp injections to raise HGB which worked great. All my other counts were normal Then last June, I got covid and it all changed. My WBC count skyrocketed and never returned to normal. A bone marrow biopsy showed I had flipped to AML and have been in treatment since. Hoping for bone marrow transplant soon. I wish you well!!!!

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Replies to "I was very fortunate. I was diagnosed with MDS in 2019 and only needed one transfusion..."

Welcome to Connect, @tjakusz I’m sorry to hear you developed AML. There are several of us in the blood cancer support group who have had AML, received bone marrow transplants and we’re doing great.
I just celebrated my 4th rebirth day the end of June, @alive is in her 7th year post transplant, @edg1123 at 3 years and @kt2013 with a milestone of 10 years! So there is hope beyond all the hoopla your going through with the AML treatments, reaching and keeping a level of remission until Transplant.

So if you have any questions at all don’t hesitate to pop into our discussions or ask us anything! We’re here to offer support! ☺️

~Acute myeloid leukemia (AML): What can I expect?
https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/
~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
What treatments are you going through for the AML? Do you have any pesky mutations?