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@beeegirl

Hello. I am a 51 year old female. I was diagnosed in August 2023, 50yrs old, with stage 1-MM IgA Kappa light chain, no hypermetabolic abnormalities, plasma cell percentage of 80%, no high risk features on FISH. I was put on C1D1 of Velcade, Revlimid, and Dexamethasone at the end of August. My numbers decreased significantly and I was told I was ready for a BMT (autologous). I assumed that this was what I definitely needed to do because since the very first day of dx, I was told it is the best form of treatment. After numerous tests and then more tests, I was cleared for the transplant. On the day of signing consents, I heard the word Leukemia and that this could cause it and I halted! So many questions came up in my head and I asked the main one, why would I do this to give me a possible deeper remission (not cured) and a possible longer remission, yet put myself in danger of another blood cancer that is more severe. I do not know if leukemia is more severe, but just the word leukemia freaks me out. My doctor told me that it was not a high risk but that it is a possibility and this is why they have to disclose it. I sat on this information for a while and did some gentle research and talked it over with family and sort of reluctantly decided to go ahead with the transplant. I had mine in January 2024. I had a REALLY ROUGH go of it. I had the normal side effects from the melphalon but then ended up in ICU 2 times because I somehow got sepsis. I was in the hospital 1 day shy of a month. I am at 200 days post transplant and I am still not at the energy level I was before my transplant. I do not feel better than before, either. I did not reach full remission. I was at 6-8% plasma cell before and after BMT I was at 4-5%. I am now taking 10mg Revlimid daily. If I had it to do all over again, I know that I would not do it. I would do the collection of cells and have them on standby if or when I would decide to do a BMT in the future, as a form of last resort. With all of the other meds out there now and available treatments, I would not choose the BMT. This is just my experience.

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Replies to "Hello. I am a 51 year old female. I was diagnosed in August 2023, 50yrs old,..."

Very sorry to hear what you have gone through. I was fortunate to have a doctor who said to my husband, "If she was my wife, I would not have her have the bone marrow transplant because she's responded so well to treatment and doesn't have side effects. If the treatment stops working there are so many more." That was over two years ago. Thank you for writing your experience to help others make the choice that is correct for them. A former nurse that chose the operation also takes Revlimid and was told this expensive drug is something she will have to take the rest of her life. Originally, this former nurse thought they had told her the drug would be taken for two years. I was told there are grants you can apply for, but all that takes time.