Acute Myeloid Leukemia 5year after Melphalan stem cell.

Dear all, as we all know chemo therapy comes with risks. Always a con with a pro…

I have been in remission for Myeloma for 5 years: I had a complicated transplant back in 2018, and was taking thalidomide maintenance there after.

Recently, my white blood cell count has been lower than it should, and after 3months hitting a 0.05, we decided to do a bone marrow biopsy. The findings are shocking and it turns out, I have acute Myeloid Leukemia.

I think we have caught it early, and it’s still at the moment but can’t risk it moving fast at any time soon.

I start treatment only 12 days after diagnosis…

Firstly, I wanted to make fellow myeloma fighters and survivors know about this, so to keep an eye out to intervene fast, and secondly I wondered who has also had same diagnosis and what treatment you might have had.

My hematologist is prescribing me with the following based on my genetics. He said chemo wont work (although this seems like chemo).

7 injections a month Azacitadine & Venetoclax a 28 day tablet cycle. Both for three months so to put me in remission.

Then Allogeneic doner bone/stem transplant with conditioning chemo.

I had hoped I would never have another transplant, but I’ve been told that the aim is to cure me, and the up side would be curing me of Myeloma.

I’m feeling well in myself at age 50, and very positive and in a strange was excited to get to the other end.

My boss has asked what therapy I’ll be given as know someone in the medical industry, make sure I have all info. He mentions for my particular challenge the latest agents are as follows:
Enasidenib
Olutasidenib
Ivosidenib

I searched and only ivosidenib is showing up in searches for UK… I believe it’s in progress with NICE .. I’m wondering if they are more likely to be available privately or in states only…

It would be great to hear from someone who has been in same situation

Thank you,

Kim