Hi Jamie. You’ve had a rough summer of chemo. My heart goes out to you because I know the treatment for AML isn’t easy. I also had the FLT3 (along with several more) mutation and that’s the culprit which can make this leukemia so challenging to treat. I had FLT3-ITD which bumps it to the med-high risk for relapse. I don’t know if the risk level is decreased for FLT3-TKD.
However, what I do know is that my local hematologist-oncologists who treated me for AML and my Mayo Hemo/oncol were all agreement that having the FLT3 mutation pretty makes the patient an automatic bone marrow transplant candidate. It remains the only cure for AML.
The reason being, some of the FLT3 mutated cells can have the ability to elude or circumvent chemo. They can go dormant and ‘hide out’ during chemo only to re-emerge some time later and start the cycle again. It can be up to 18-22 months later.

Midostaurin is an abrogating drug which is targeted to the FLT3 mutation and is used in conjunction with standard chemo for AML. I was on that too. But from discussions with my doctors, the chemo and midostaurin only work for so long. Even repeated chemo, at some point, will no longer be able to suppress the FLT3 mutated cells. Basically, your old immune system no longer recognizes these cancer cells as the invader, which they’d normally ‘take out’. So cancer cells are able to proliferate out of control. Receiving an entirely new immune system from a donor, through a stem cell transplant, will allow those cells to be under the watchful eye of a healthy immune system again.

After 3 rounds of chemo, I was at 0 MRD and even at that, it was a rush to find a donor and have the transplant before there was any chance for a relapse. There was only 1 more round of chemo after that and it was the pre-conditioning right before transplant. No more chemo for AML.

That was over 5 years ago and now I’m super healthy and feel as though nothing ever happened. I was 65 at the time, so yup, I’m officially a ‘woman of age’ at 70. But I’m a far cry from my chronological age and feel like I’m in my 20s. ☺️

Where I’m going with this, if it’s determined to be in your best interest for a bone marrow transplant I’d encourage you to go forward. It’s the opportunity to beat AML and enjoy a second chance at life.
There’s a bunch of us in the forum who have gone through this process and we’re here for hand holding, life line, inspiration and encouragement. So please let me know what you find out with your next BMB on Oct 14th.

Jamie, the photo in your bio is just gorgeous. Is that you and your horse?