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Anyone have bone marrow transplant for aplastic anemia?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 17, 2022 | Replies (13)Comment receiving replies
I am curious as well about the transplant. My husband has MDS (Myelodysplastic syndrome) another bone marrow cancer. He has had the chemo and then hospitalized for 3 wks for infection for which they never found the source. He is in remission so the chemo did it’s job but the hospitalization did a number on his body both physically and mentally. They have given us three options for the next step. #1 two doses of the heavy chemo followed by transplant #2 5 doses of gentle chemo followed by 14 days of pills and repeat every 4-6 wks or #3 pills indefinitely. He is so afraid of hospitalization again that he doesn’t want to have transplant (the only cure per say) because it would require at least a month in hospital afterwards. Need responses of peoples transplant experiences. This is a man that worked out 4-5 x per week prior diagnosis and treatment. Oh for the MGUS people he was told he must have had it for at least 5 years before the MDS diagnosis. His white count had been low for years but all of a sudden just bottomed out and then biopsy done.
Replies to "I am curious as well about the transplant. My husband has MDS (Myelodysplastic syndrome) another bone..."
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Hi @jrwilli1, if it’s any incentive at all for your husband to follow through with a bone marrow transplant, I met a wonderful woman when I was having my transplant. She had MDS and is now fully recovered after her stem cell transplant. We both went through this journey at the same time and became fast friends along with our husbands. She and I, more than three years later are still good friends and write each other frequently. Without that life saving procedure, neither she nor I would be alive to tell our stories.
I am sorry to hear that your husband had horrible experience in the hospital with that unexplained infection. Those infections can happen with the snap of a finger because of his weakened immune system. And especially after chemo. We hit a point called, nadir, where all of our blood counts drop critically low. Our defenses are at zero at that time and we can get unexplained infections and fevers. Neutropenic fevers, and we end up in the hospital on antibiotics until the crisis passes. That may have been what happened to your husband. I went through that crash several times before my transplant.
After transplant, I gained ground steadily and now I’m healthy, active and living a very normal life. No more chemo, no more infections, no more medications! (Except vitamins D3 and calcium). He would need to be on meds for at least a year following the transplant but that is a really small trade off for a second chance at life!
Depending on the factors of his disease sometimes a patient can use their own stem cells which requires a less lengthy recovery and no rejection. My stem cells came from an anonymous donor who matched my biomarkers. That gave me an entirely new immune system. I’m not sure which treatment your husband would have either an allogenic transplant with donor cells or autologous meaning his own cells.
I really encourage your husband to give this another thought. It isn’t an easy journey but it is worth the life we receive on the other side of transplant. I have several links I’d like you to read and share with your husband.
Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
And this recent blog piece about being a mentor to another young woman going through her BMT.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I know there’s a tough decision ahead for him to make and there is a time commitment with the procedure. I had to remain near Mayo for 100 days. But not actually in the hospital for that length of time. If it’s his own cells, then the stay is shorter. Are you near a large hospital where the transplant would take place? Would he be willing to travel to one of the Mayo Campuses for his transplant?