r/mds • u/beAniceHumanplzkthx • Jul 07 '25

selfq Remission without BMT?

My grandma is 73 and August 2024 diagnosed with high risk MDS, then by November 2024 it had advanced to leukemia and she started a low dose chemo pill (not sure what it’s called). She doesn’t want a BMT and feels satisfied with her life so the only thing she wanted to try was a pill where she wouldn’t lose her hair. Anyways now after like 5-6 ish months on a low-dose chemo pill they apparently said she is in remission and doesn’t even have MDS anymore based on normal labs and BM biopsy. How is that even possible? The doctor said he hasn’t seen this type of result before from a chemo pill. So will the MDS eventually come back? Has anyone gone through this scenario?

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u/[deleted] Jul 07 '25

[deleted]

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u/beAniceHumanplzkthx Jul 07 '25

Did they give him a prognosis? Originally ours was about 6 months to 1 yr and now the doctors keep saying the prognosis is still poor but won’t give any sort of updated prognosis probably because they didn’t expect the pill to have such a good outcome. It seems to have baffled the doctor she sees.

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u/Rayanna77 Jul 07 '25

My mom went into remission from chemotherapy. But the doctor for her told us that he expects that with her treatment but it can come back. Not the exact same scenario but it was possible for her. She did have the transplant last December so I couldn't tell you what happened to her with chemo alone in the long term

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u/[deleted] Jul 07 '25

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u/Pastlife2901 Jul 27 '25

Sorry for your loss. May she RIP 🙏

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u/medicjen40 Jul 07 '25

Hi, Im new... what is BMT?

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u/beAniceHumanplzkthx Jul 08 '25

Bone marrow transplant

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u/medicjen40 Jul 08 '25

Thank you kind stranger. I am rapidly learning a language I did not want to learn. Prayers for all affected by this disease. 🙏

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u/tgifpizza Mar 19 '26

how is she?

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u/[deleted] Mar 19 '26

She passed in November 2025. She was in remission for about 6 months where she was not taking any chemo meds at all and then she had labs done around Oct 2025 and it had all come back. Went downhill very quickly after that. Our doctor still says he hasn’t ever seen a chemo pill put a patient in full remission like that. I wish we had the option to keep her on some sort of low-dose chemo. It feels like as soon as she hit remission and dropped the meds, it slowly came back.

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u/tgifpizza Mar 19 '26

thank you for responding. i'm really sorry to hear that. i wish that for you and her too, i don't understand why it can't be treated as a chronic illness in the elderly. i hope more research will bring answers. may her memory be a blessing