r/leukemia • u/Capable-Frosting-779 • 1d ago

AML CNS involvement in AML relapse?

So I’m back…

My mother (69f) has AML, FLT-3 mutation. Despite her age, she was approved for a stem cell transplant as she was physically very fit. She is of East Asian descent, and as such it can be much more difficult to identify an unrelated matches donor. As it turned out, no matches donor was found, so my brother (29m) of mixed Asian/Caucasian heritage was the donor.

She got through her 100 days post transplant with pretty much flying colours, and was just starting to feel optimistic when…

She started to have numbness and pain in her legs/feet, and challenges with her mobility. She went back to the hospital on Friday, and was admitted, with CT/MRI scans performed, as well as bloods.

Her white cells are now at 45 from c. 5, so the cancer is definitely back, but the scans suggest CNS/spinal involvement. At the moment, we’re waiting around for them to do a lumbar puncture/further tests tomorrow to see what gives.

Does anyone have any experience of this kind of thing? I’ve done a cursory glance at the medical literature and it seems spinal involvement is Not A Good Thing. Should we be preparing for the worst?

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u/Capable-Frosting-779 1d ago

Thanks so much for the replies, folks. It’s really good to hear from other people that have experienced something similar. I’ll keep you all posted on what happens.

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u/pops-lukaemia 1d ago

Hi there

My dad is 64yo. Diagnosed with AML leukaemia last February. He relapsed the week before Christmas and was also told it had spread to his CNS.

He had a stem cell transplant in March this year and is nearing his treatment for the CNS involvement.

Google doesn’t help. I was the same and couldn’t find positive information for AML patients with CNS involvement. Just don’t loose hope. My dad seems to be doing well at the moment

Happy for you to message if you wanted someone to talk to.

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u/jjjj8888jjjj 1d ago

My daughter had Cns involvement with her second ALL relapse, about a year and a half after her first BMT. It was putting pressure on her brain and causing seizures. Obviously different forms of leukemia and acre but I figured I’d still say something. Ask that they measure the opening pressure for the LP, although it may have been a bigger issue in my daughter’s case. Treatment was aggressive chemo (no radiation) then CAR T.
The treatment rates for this sort of thing are obviously not good, but the data is older and new methods are being used. Personally ignoring the percentages has felt helpful.

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u/TastyAdhesiveness258 1d ago

Did they do LP and check for CNS involvement prior to the SCT? I had CNS and it just took several rounds of chemo injection into spinal column to eliminate and has not come back after +1 year. Maybe they can treat the CNS and then re-asses further treatment for overall AML.

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u/orgy_porgy 1d ago

CNS involvement is very common with FLT3, however despite the long term potential for relapse it isn't necessarily any worse prognosis wise because it can be treated. I had it and took several rounds of lumbar punctures w/ chemo for it to clear up, followed up with a BMT 2 months ago. FLT3 inhibitors long term will probably be recommended too.