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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
Quite a few of our cancer meds are used for multiple conditions. Conditions tend to overlap.
Most of us with a blood condition tend to be immune compromised. Especially if our white counts are down. If you’re on treatments, they also tend to lower our ability to fight infection.
That’s fantastic news if there’s been a donor match. Ideal doctor’s would like a 10/10 match, but 9/10 will work fine!
A sibling is also a great match so finger’s crossed your brother comes through. The medication he’d have to take is a very small price for helping his sister. It’s not that big of a deal! My donor did it for a perfect stranger! I still don’t know who this kid is but he was only 20 at the time. I know you’re not real close with your siblings but c’mon…he could save a life by doing this. Giving someone a second chance at life is a priceless gift!! 😍
Be The Match foundation is who Mayo uses to procure donors. https://bethematch.org/
You won’t be able to find out who your donor is for 1 year if from the US. Europe, I believe is 2 years.
Replies to "Quite a few of our cancer meds are used for multiple conditions. Conditions tend to overlap...."
Do you know if there are other places to procure donors...other databases they can search, even overseas? Right now, my whites are holding out. my hemoglobin is beginning to lower (9's), but bounces in the 9 and 10s, my platelets are the lowest ive ever seen now in my entire life, @ 140 range. the other things in my blood look like a complete disaster, but then i tell myself, that must be the blueprint of PMF. My spleen is at 9 cm, like last month. Its not really shrinking anymore. They have me on half the regular dose of Pacritinib (for a reason). And my transplant doctor up at The Mayo said that they have the new medicine called Momelotinib. That will help reduce the anemia portion driven by the PMF.
My family is slowly coming around (my mom and brother), but not my sister. They reacted so irrationally out of fear. And I cant blame them. really. They want to see a cure, as do I. They rather i wait for a cure and not do the transplant.
Talking about finding cures...we all know these scientists and researchers are working hard at it every single day. And, actually, I think they are close to finding one. If my disease would only hold out until they found the cure, wouldn't that be fantastic!!! Heres to extremely positive and hopeful thinking.... we can dare to dream too. 🌌🌟🌠
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One of the hardest part of this journey (transplant process), is knowing that you have two siblings that could be potential donors. I went into this decision head-on last year, not even thinking twice. Like you said before. And then, as time went on...they started realizing the realities of my survival. The transplant doctor told them it was 50/50 and add another 30 percent on that i live with disabilities afterwards. When my sister heard this, she just broke down and completely severed ties with me. She is 16 months younger and (I bet) would be my 100% match. But my brother, at least is testing. Whether or not he ends up donating is a whole different ball game. We just can't lead a horse to water. You know. Today, my local oncologist was extremely surprised when I mentioned (that the donation team told him there is a possiblity that he gets leukemia from the Filigrastem/Neupogen). When i looked up the side effects of the drug, nothing like that is even mentioned in the fine print. No matter how altruistic the "ACT" of donating blood and bone marrow is.... some people will not go thru in the end. I just have to hope the Mayo can find me some unrelated 100 percent (extremely young) match. I have to continue on my journey with all the hope, strenght and courage i can find. 💓