MRD neg after C1 consolidation (AML INV16 FLT3-TKD) Anyone avoid BMT?

Posted by boomer333 @boomer333, Sep 18 7:45pm

My 30 yo daughter was diagnosed in May 2026. Did 7+3 with Mylotarg & Midostaurin. Became MRD negative after Cycle 1 consolidation and is finishing final Cycle 4 in two weeks. She and docs are trying hard to avoid BMT (GVHD, infertility, etc...). Hard to find stats specific to her younger age, CBFB mutations and targeted meds rolled together. Anyone have anything similar and was able to go w/o BMT for many years/decades and remain in remission?

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Lori, Volunteer Mentor | @loribmt | Sep 19 9:54am

@boomer333 I’m sure there’s a million things going through your mind with what comes next for your daughter after her treatment for AML. She’s responded encouragingly to treatment with the continuing negative MRD results so that’s half the hurdle!

The thing with AML, from my own experience especially with the FLT3 mutation (and a couple others) there can be a higher risk of relapse. Even with the targeted drug, Midostaurin, that FLT3 mutation can have the ability where some cells go dormant, eluding the chemo. It may then reemerge months later when ‘the coast is clear’ and start replicating again. All it takes is one lingering mutated cell. From what I learned, if there is relapse, it can be more of a challenge to clear and the best window for BMT is following the first period of remission. So it may be a bit of a gamble to wait. It can depend on the risk profile of your daughter’s cancer.

At this time, the bone marrow transplant still remains the only potential cure for AML. (Just had this discussion with my transplant doctor last week). I had my transplant a little over 7 years ago and it has been very successful.

However, I was 65 at the time and reproduction issues weren’t on the radar. With having any type of cancer treatments if there is a concern for infertility, often younger women will have their eggs harvested for the future. But again, there isn’t very much statistical information available for younger adults having had this transplant and bearing children.

In an article on Pub Med
https://pmc.ncbi.nlm.nih.gov/articles/PMC1479532/
“Becoming pregnant after stem cell transplantation depends on such factors as cumulative doses of chemotherapy and radiation and mother’s age at time of transplant. There is increased risk of prematurity, low birth weight, and spontaneous abortion. Pregnancy should be managed as high risk.”

Your other concern about graft vs host disease (GVHD) is certainly valid. However, newer protocols over the past several years have included medications given at the time of transplant to help mitigate more serious GVHD events. We transplant patients do need to experience some GVHD. It is that mechanism which helps to discover and attack any rogue cancer cells. As in the case of your daughter and myself, our old immune system no longer recognized the FLT3 mutation as cancerous. That allows it to multiply rapidly, unchecked. With the new immune system, gift by the donors stem cells, allows a ‘fresh eye’ so to speak and the FLT3 cells are again recognized as invaders and snuffed out.

I’d like to introduce you to a friend of mine. I was fortunate enough to mentor Sky and her mom through Sky’s BMT journey. This was a recent article published by Mayo of Sky has regained her future. It offers hope to other young AML patients! https://newsnetwork.mayoclinic.org/discussion/life-beyond-leukemia-how-innovation-and-compassion-helped-sky-reclaim-her-future/

Is your daughter at a larger cancer center? Would she have to relocate for the BMT?

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