Hi Art, I started out with MDS in 2021 and was told it had progressed to AML about ten months later. I had to have quite a few blood transfusions while I had MDS. Initially, I was treated with IV Decitabine, then with subcutaneous shots of Vidaza. After I progressed to AML, I was given a Picc Line and IV Decitabine was resumed, along with a targeted oral medication, Venetoclax. That put me into remission for about a year and a half with maintenance chemo and targeted medication every six weeks.
I don’t recall needing transfusions while in remission. If I did, they were few and very far between.
Prior to my transfusions week before last, I had a blood transfusion five weeks earlier and four weeks before that.
Now, it seems, my blood counts are just not coming up the way the should. I’ve been in treatment a long time and my bone marrow is compromised.
Do you know which mutated genes you have? When do you see your oncologist again? Do you have a bone marrow biopsy scheduled?
Thinking of you and wishing you welll.🍀

2 platelets and 1 blood today

As my disease - AML - progresses, I’m finding that I’m needing a lot of Transfusions. Both this week and last week, I needed blood and platelet transfusions. Despite that, my blood counts remain low.

MDS is a rare form of Blood Cancer. It stands for Myelodysplastic Syndrome. a group of cancers that affect blood cells.

I have been diagnosed with hypogammaimunoglobenemia 3 and half years ago and then CLL 3 years ago, what is MDS?