Connect
← Return to Can anyone share their bone marrow transplant caregiver experience?
Discussion
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
I'm waiting for a bone marrow transplant. Also waiting to see if one of my siblings is some sort of match. I'm so grateful this discussion is here because the first several months of transplant screening at the Mayo was extremely intense, both for me and my family members. So far, there is no donor match for me. The information here on caregiving is great. I would like to point this discussion to some of my family members and my caregivers. While I still need to read more about bone marrow transplants, I'm extremely uneasy, still, about whether or not to go thru with it.
I lived 25 years with Essential Thrombocythemia and it morphed into PMF last year, very aggressive with the worse kind of genetic markers. actually. While Im extremely thankful to have the very very BEST in care up at the Mayo (Outstanding hematologists and transplant doctors), going into transplant is no easy decision. I've been screened and re-screened and interviewed until their entire team felt like I was going to be a good candidate. It was absolutely exhausting. Now theyve drug tested me and threw me into some "surprise" psychiatrist visits. Sometimes I feel like they have really pulled the rug out from under me, but no, the disease did that. I have some great days when I can tell myself....this disease will not define me. The things they need to get done are extremely important...yet I feel (when i take these pre-transplant trips up there), that they are taking me out of my comfort zone, not able to sleep well away from home, then throw some random testing and psychiatrist meetings (of whom I do not have any personal history with)...so its like throwing me into the lions den. And I absolutely feel that they have no compassion for what "out-of-towners" go thru. AT this particular point, I'm considering putting off the transplant, but want to wait to see what kind of bone marrow donor they may be able to find. I've had nothing but raves and great words expressed from these doctors about how well I' m doing while on my special treatment drug (in pre-transplant waiting). ....this is just a great story unravelling.
Replies to "I'm waiting for a bone marrow transplant. Also waiting to see if one of my siblings..."
Connect
Hello @cupofsunshine…that name just brings a smile to my face. I agree with @becsbuddy, you gave yourself a really great name for the forum.
You’ve had quite a journey with ET for the past 25 years. Unfortunately now it’s progressed to a more serious type of a chronic leukemia called Myelofibrosis which affects the blood-forming tissue in the bone marrow. Your condition has morphed into an aggressive form which will also require an aggressive treatment plan to keep you healthy.
One of the only potential cures for this condition is a bone marrow transplant which will replace your diseased bone marrow using healthy blood stem cells from a donor. It is infused just like a blood transfusion and in my case took 20 minutes. Pretty anticlimactic considering all drama leading up to it.
I can tell you from experience that a Allogenic bone marrow transplant is a 2nd chance for a healthy life. I had acute myeloid leukemia with 3 mutations which made it very difficult to treat and any remission would be fleeting. So my only choice for longevity was a bone marrow transplant…I jumped in with both feet and never looked back!
I’ll admit it’s not walk on the beach. There are some rough days the first month but probably nothing worse than you’ve already gone through. There’s a slow but steady recovery period and it doesn’t come without risks. In my experience, the reward of being healthy again was well worth the potential risks and initial discomfort from the chemo and the transplant.
Mayo Rochester is my home away from home and my transplant team has become my second family. My doctors are some of the best in the world (I think they ARE the best) and the teams are second to none. I understand the difficulty of logistics when you don’t live near the clinic. I live about 5 hours from Rochester. But the care I received there and continue to receive 4 years later, make it worth the travel to get the very best care.
I can assure you, the staff does care about “out of towners” but to get the best care, you may need to make personal sacrifices. To help make the transition back home easier, your Mayo team will work with your local hematologist oncologist office for some followups and lab draws to save trips.
I can assure you, you’re not being singled out with all the testing. All transplant patients go through rigorous testing before we go into the transplant. The doctors need to make sure we’re physically and psychologically capable of being able to handle the rigorous chemo, medications, and reactions that can happen during and after the transplant.
I know when you read all the info about potential risks it’s daunting. Everyone is different and we don’t all experience the same side effects so it’s best to avoid all the bone marrow literature and just take it day by day.
Your transplant doctor will review any potential donors from the Be The Match foundation. It’s a global registry for stem cells so that will increase your chances of finding a viable donor. The closer the match is to your HLA markers will help to reduce any negative reactions from the new cells. Your doctor will chose accordingly.
Your team will be monitoring you closely and daily. They are prepared for any contingency. My doctor told me to let them do the worrying and I did.
I’m 4 years post transplant and feel as though nothing ever happened. My donor was a 20 year old male from the US at the time and I was 65. I joke about it, but I really do feel as though I’m 20 inside. My energy level feels limitless and I’m coming up on 70. I have an only a very slight case of GVHD with my tongue but it’s managed. I would not be alive today without this gracious gift from an anonymous donor and I expect to have a normal life span at this point.
Obviously this has to be personal choice for you. But I’d encourage you to consider going through the transplant…it will give you hope for the future.
What questions do you have for me?