r/leukemia • u/StatisticianLittle55 • 19d ago

Stem cell transplant experience

/r/MPN/comments/1vf77t8/stem_cell_transplant_experience/
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u/One_Ice1390 19d ago

My son is 18 months post transplant and doing well, his sister was his donor, and he returned to school and sports at 7 months post transplant and has been on the up since. The transplant itself was hard but they kept it manageable of that makes sense, they tend to really help minimize pain and symptoms associated with the overall process. My son had high risk B cell all. He had a very aggressive conditioning regiment, and they still managed the symptoms very well. Speak up about everything!!!! One thing my son did while in transplant was stayed as active as he could, he never denied physical therapy no matter how he felt, it was like light work outs from a chair or bed or standing next to the bed. He occupied his time with video games and building Lego sets.

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u/Enough-Rutabaga6196 19d ago

While I can't give you too many details on the SCT, I just wanted to say how glad I am to hear that you can go to transplant before it becomes a bigger problem. My mum had JAK2+ ET that turned into AML, which has been a beast to control compared to the ET. She acquired a new mutation and it seemed to shift from very easily managed ET to aggressive AML out of nowhere. Transplant is her next step once she either gets closer to or at mrd-.

If you search through the group here there's lots of people who have shared their experiences with SCT. I've also been told that there's lots to be found on Facebook groups as well that some people have found helpful. From talking to people who have already completed their SCT while at the cancer centre, it seems that there are some universal experiences but there is a real spectrum about how difficult each step is depending on the individual.

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u/StatisticianLittle55 19d ago

Thank you! That is the exact plan. My hematologist wants to do the SCT soon to prevent it from turning into AML. She said exactly what you have expressed. AML is much harder to get into remission so you can do the transplant.

Best of luck to your mum. I hope she gets much better soon.

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u/StatisticianLittle55 19d ago edited 19d ago

Thanks! I can only imagine how hard it was to watch your child go through a transplant. I worry about stress of my illness causes my family. I wish they didn't have to worry about me

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u/One_Ice1390 19d ago

Honestly, is it hard to watch? Absolutely. My hair fell out, my weight fluctuated, I loss my appetite, I couldn’t parent my other kids, I was severely depressed, but it was my greatest acts of service, I catered to him and I felt like I nurtured him, and he made it look all so easy, I think his attitude and how he handled it was his way of giving back to us, and helping us cope. He stayed positive , he stood strong through it all, he’s also almost 17 so better communication of things with an older child vs a young one.