Connect
← Return to My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Discussion
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Oct 2 3:09pm | Replies (781)Comment receiving replies
I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high counts and splenomegaly for 8 years but now I have extremely low white count. ( neutrophils are 0.2)
I can’t stop the Jakavi and there is no treatment to increase my white count. The only option offered is a BMT.
I do not have leukemia.
My brother is an identical stem cell match!
I have had a liver transplant due to complications of myelofibrosis 10 years ago.
I have no other conditions that would complicate the procedure but of course I’m concerned. Has anyone else had a bone marrow transplant for myelofibrosis and what has your experience been. Has anyone achieved a cure with BMT?!
Replies to "I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high..."
Hi @dawnmarieyoung I just wanted to follow-up with you to see if you caught my reply to your question about BMT for Myelofibrosis. Here’s the link in case you missed it: https://connect.mayoclinic.org/comment/1356747/
Have there been any more discussions with your doctor regarding the transplant? Any target date planned?
Connect
Hi Dawn. Welcome to Connect. You’ve popped into a great conversation with those of us who have gone through the bone marrow transplantation (BMT/SCT) for various blood cancers and conditions. For many of us it is the only potential cure for our diseases.
I had my transplant 6 years ago for AML (acute myeloid leukemia) at 65. I’m in full remission, 71, considered cured, healthy and expected to have a normal life span. At the same time I had my transplant, I met another woman at Mayo who was also having hers for Myelofibrosis (MF).
We became fast friends and still text each other pretty frequently. Her MF had progressed to the point where treatments were no longer effective. She was offered the BMT and didn’t look back. She too, is now in her 70s, fully active, energetic and fully enjoying her 2nd chance at life…cured.
It’s great your brother is a perfect match! So that’s one little box you can check off. I’ll be upfront and let you know that this BMT process isn’t easy. There will be a couple of weeks, initially, where you may feel fairly fatigued, possibly nauseated and wanting to nap most of the time. But that time passes quickly. Your transplant team will do their utmost to keep you comfortable and well cared for.
The stem cells are given just like a blood transfusion via a port, taking usually less than 30 minutes. Pretty anticlimactic after all the buildup. ☺️ (There’s no actual surgery involved except for a port installation.) It can take about 2 or more weeks for the newly infused cells to engraft into the bone marrow. When that happens and they start churning out new blood cells, you should notice a slow, but steady return of energy and stamina. Recovery takes time but when you consider the alternative of treatments no longer working, it’s worth the effort.
Each transplant center may have their own protocol for how the BMT is done. Mayo-Rochester, I was an outpatient where I had the transplant in the hospital but convalesced off site, near the clinic. There are other hospitals that require a 6 week stay and then recover nearby in a hotel or transition facility. Do you know what your clinic will expect? Do you have a full time caregiver on board?