Relapsed/refractory AML KMT2A post transplant and post 2x DLI
I won’t go into deep details but here’s a quick rundown — my daughter (15 but was 14 at time of dognosis) was diagnosed February of 2025 since then she’s had a BMT from her brother in July 2025 10/10 perfect HLA match, relapsed day +104 post transplant, did revuforj aza and ven relapsed again February 2026, did FLAG IDA GO went aplastic got DLI February 27 and March 18 marrow showed no disease and 100% chimerism, April 8th marrow 1.4% and 95% chimerism she then got another DLI April 14, April 29 marrow 79% and 84% chimerism .. I switched her hospital and care team to MSK they did a marrow and CSF her CSF was not checked since November 2025 I’m not sure why but this time it was checked and it came back 73% she’s had so many neurological issues that I’ve been telling her previous hospital and team which I was brushed off constantly it’s even documented that I requested her CSF to be checked but they didn’t see it relevant and said her symptoms were anxiety and stress — now that she’s seen basically all the chemos they have to offer she will be entering the trial of Revumenib and mezigdomide next week at MSK her peripheral blood is also showing 61% — I’ve been reading about it and it sounds promising but I’m nervous because it’s literally brand new and just in the safety piece of the trial .. has anyone heard of this trial? Are you apart of it? The goal is to get her to a second transplant with me as her haplo donor