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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori
What diagnosis brought you to a BMT?
How has it impacted your life and that of your caregiver?
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@loribmt Lori you now have me smiling and laughing at your image of reading my post 😁. Thank you so much for celebrating this news with me in your positive and caring manner! You are an amazing person and MCC mentor. 💛 I will say again how much I appreciate Dr. Moustafa and his endless compassion and patience with me as I have stumbled my way (mentally and physically with the early balance issues lol) into being a CNS lymphoma survivor. Another fortunate part of this experience for me. So much to be thankful for. 🙏
I am still not sure I understand all of the complexities with CNS lymphoma and the challenges and variations in treatment, but he has helped to educate me a little more. I see him again in January after my next scans and will probably have something else to ask lol. The more I learn, the more I realize there is so much I still don’t know. 🙂 Thanks again Lori!
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2 ReactionsDoing well. I finally got my taste buds back and starting to eat a littlemore. Unfortunately Monday I was hospitalized for sever neck and mid back pain. I can't seem to catch a break.
On the bright side I became 100% my donors blood and bone marrow on September 23rd.
Thank you for checking on me. Hope your doing well.
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2 ReactionsGood morning, Mary Lou! I can sure share your joy of having those taste buds return! It seemed to take forever for me! They had disappeared months before the transplant with all the chemo treatments for my AML. Hard to forget how awful food felt in the mouth, and then no taste. Eating a piece of cheese felt like sucking on a stick of butter, everything else was like cardboard! I’m so happy you’re able to ‘savor the flavor’ again and have the mouth feels! Eating cardboard wasn’t fun! LOL
It sounds like your recovery is moving along nicely. If I counted correctly today is Day +68 and 2/3s of the way to your 100 days! Congrats with the great chimerism report!
What’s going on with your neck and back? Are you still in the hospital?
Hi everyone. Today is Day 91 post allogenic transplant for my dear husband. We have had plenty of experiences so glad to be at this point and doing ok.
He had the transplant because of being diagnosed with MDS (one year ago tomorrow). Because of his “high risk” disease and cells of “concern” at the 60 day bone marrow biopsy, his doctor has ordered six cycles of “maintenance chemo.” The first cycle really took out his new blood counts and he was feeling quite ill (also had a recurrence of c diff). Does anyone else have experience with post allo maintenance chemo?
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