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.

The subcutaneous were for 3.5 years until this reaction occurred and now gotta figure it out with the doctors

I had become subcutaneous site infusions for lack of immunity and now I am going to infusion centers after this reaction and hospitalization.