Hi everyone,
I have been reading forum posts in the background, trying to build some reassurance that all will be fine.
I was diagnosed initially with Myelodysplastic syndrome ('MDS') 18% blasts. Admitted to NUH to begin Flag-Ida.
When the NGS results came back it confirmed I had Acute myeloid leukaemia ('AML') 20% blasts with the NRAS and KMT2A -PTD mutations.
I completed my first round of Flag-Ida on 12th August and blood results recovered really well. Unfortunately I have been told that I am not in remission. The blasts reduced to around 8-10%.
Whilst I appreciate this is A reduction, it’s not what we were hoping for. My mutation is known to be resistant to treatment.
I’m 39 and otherwise healthy. They will be altering the chemo for the 2nd cycle but now I’m concerned it won’t work and I won’t get to Stem cell transplant.
Any experience out there would be welcome.
Hi @Sjbtaylor and a warm welcome to the forum.
You’ll find people on the forum who really understand the realities of living with blood cancer.
I’m sorry to read about your diagnosis and that Flag-ida didn’t deliver the blast count reduction you and your team had hoped for.
I was diagnosed with Myelofibrosis which progressed to Acute myeloid leukaemia ('AML') aged 59 in October 2023.
Like you when blast count was over 20% I was admitted and had Flag-ida.
For me it barely moved the dial so the hoped for Stem Cell Transplant in spring 2024 was off the table.
I was then put on maintenance treatment Venetoclax and Azacitidine which eventually got me to a point where I was offered a Stem Cell Transplant again. Thankfully anonymous donor still able and willing to donate cells.
I had my Stem Cell Transplant April 2025 and doing well 17 months on.
So message is try to remain positive as there may well be other ways they can get you to a point where Stem Cell Transplant is an option.
Take care