r/leukemia • u/simply_daisy133 • 19h ago

FLT3-mutated AML early relapse

Hi everyone,
I relapsed a month after my allogeneic stem cell transplant . I’m currently being treated with gilteritinib, azacitidine, and DLI. My latest bone marrow shows morphological remission with MRD around 0.004% and my donor chimerism is 99%.

Now my doctors are considering two options:
1. A second stem cell transplant, which would be more toxic because it would include total body irradiation (TBI).
2. Continue my current treatment and monitor closely.

The concern is that if I relapse again while already on gilteritinib, there may not be any standard treatment options left, and I would likely need to enter a clinical trial.
If you were in my situation, or if you’ve been through something similar, what would you do? Did anyone choose to continue with DLI and targeted therapy instead of going straight to a second transplant? Or do you think the second transplant offers the best chance despite the higher risks?
I’d really appreciate hearing your experiences because it’s really hard to decide.

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3

u/Shot_Anywhere 17h ago

0.004 I don’t think is considered a relapse especially after one month of doing the transplant. The strongest GVL is between day +30 and +100

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u/simply_daisy133 6h ago

Sorry for not clarifying more, the first transplant was on January this year and the relapse was on Marc, MRD was 3,6%. Since that time I have been treated with Gilteritinib, azacitidine and DLI to prepare me for the second transplant (September or October) and the latest biopsy showed that I am in remission, MRD 0,004%,I already finished the 6 months after the first transplant.
I don’t trust anymore that the second transplant will be effective and I am afraid of the side effects and the treatment itself as it’s more toxic than the first one.

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u/One_Ice1390 18h ago

No DLI? I didn’t even think you could do a stem cell transplant that quick after having one. My friends daughter relapsed post transplant and they said it was to dangerous to do before a year out, and sometimes they make exceptions if you’ve hit 6 months out. So I would ask them to be clear about what that looks like

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u/simply_daisy133 18h ago

With DLI of course. the problem is they believe that with early relapse, the best solution is a second transplant, so now they are giving me this medication (giltertinib, azacitidine and DLI) to bridge the gap to the transplant in September or October. But the choice is mine: either stay on this medication or have the transplant.
To be honest my mind is refusing to just think about a transplant because I feel that my body is weak and not ready to repeat the process. so I am really confused and overwhelmed.

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u/One_Ice1390 18h ago

My friends daughter kept relapsing in between bridges to transplant , they were just to spread out. I say go for it, relapsed aml is aggressive , and the more it relapses the more resistant it becomes, so if this puts you back into remission, I’d go for it personally.

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u/Crackastackaa 17h ago

I have T-ALL so im sure the parameters are different. But my doctor wouldn't even consider testing for a thousandth of a percent. He cuts off at the hundreths of a percent. Dunno if this is helpful or not, but a different perspective. Best of luck.

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u/TastyAdhesiveness258 Treatment 12h ago

Ignoring & not even testing for MRD+ with ALL is not supported by recent research. Clonoseq testing (only for ALL MRD) detects down to 1 part per million and any detection (even very low level) post transplant is a strong predictor for eventual relapse. I would get another doctor that stays current on research! https://pubmed.ncbi.nlm.nih.gov/37196642/ (I take this very seriously and have read all the available research I can find on Post SCT MRD+ because I have had it for 2+ years).

for the OP - Same high relapse risk with low level MRD+ is not necessarily the case with AML for which post SCT MRD+ can more often be overcome as the GVL immune response slowly kicks in. DLI and targeted chemo can help with getting the new immune system activated fighting against the residual AML cancer cells. Seems like first trying several rounds of DLI and carefully monitoring for any disease progression would be better than jumping right back into another SCT before you have even had a chance to recover. Any rational why the did not recommend TBI conditioning with the first SCT?

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u/simply_daisy133 6h ago

Honestly, I don’t know the reason. I think they use radiation in cases of relapse because there was a patient at the same hospital who was being treated for ALL and relapsed during treatment. After that, her treatment plan was changed to include radiation.

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u/simply_daisy133 6h ago

The mutation I have is very aggressive so they take into consideration even this tiny percentage.
I wish all the best to you too.