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Can anyone share their bone marrow transplant caregiver experience?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Dec 18, 2023 | Replies (51)Comment receiving replies
The VA, to my complete surprise, really followed thru with things when my cancer/disease became severe. They gave me outsourced pain doctor and did some dental work and even gave me Physical therapy (pool). I've been put on a new anxiety drug called mertazapine, which is helping me gain weight. I do have many many more questions for you. But, my diet and sleep are excellent , again, finally. The mayo did emphasize they want me at my "fittest" pre-transplant. But I might be having some uterus issues now (fibroid). Once the mayo put me on Pacritinib, some weird things started happening. And im not quite sure if that medication is an immuno-suppressant, but its supposed to be reducing my enlarged spleen. whats come up is cysts in my breasts (that were non-cancerous), one extremely heavy monthly bleed (like the heaviest ever in my life), which ended on day 7...and now a uterine fibroid. I'm wondering if they are going to force me to get a hysterectomy prior to my BMT??? I'm 51.
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It’s excellent that the VA is following through with your pre-transplant care! Getting dental work and such out of the way is important.
The Pacritinib isn’t an anti-inflammatory drug. It’s a kinase inhibitor. It works by blocking the action of the abnormal protein that signals cancer cells to multiply. This helps stop or slow the spread of cancer cells.
Have you mentioned to your transplant doctor about the uterine fibroid and your heavy period. It’s on the Alert label to report any increased menstrual flow. I just have to let you know that ‘forcing’ you to do anything is not the standard of practice at Mayo. ☺️ I don’t know if having a hysterectomy is something that will be suggested or not but they won’t ‘force’ you to do anything.
Not sure which transplant doctor will be leading your team. But I’m familiar with all of the transplant team players and every one of them works with you, takes your input and together, you make decisions for your best outcome.
You mentioned that you’ve had quite a bit of the pre-testing already. So do your doctors feel that you’ll be able to tolerate the chemo for preconditioning and the meds to follow?