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DiscussionI have JAK2 ET and MPN: Anyone else have these symptoms?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (111)Comment receiving replies
Replies to "@loribmt Could you share more information about your experience with the bone marrow transplant? I was..."
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@joaniech2004 Some patients with a myeloproliferative neoplasm (MPN), such as ET, may not see much of a progression over the years. For others, there can be a change in the bone marrow such as you’re experiencing with having had ET which progressed to myelofibrosis (MF). This can leave a fibrotic scarring to the marrow, impacting its ability to produce healthy blood cells. When this happens, one of the treatment options is a bone marrow transplant.
With the transplant your currently defective bone marrow/immune system, will essentially be replaced with that of a donor. If all goes as intended, your bone marrow will be restored to a healthy state!
It’s done with a donation of blood stem cells. Blood stem cells are specialized cells that mature into either red/white blood cells or platelets. (Those cells are infused similar to a blood transfusion through an IV. They are not injected into your marrow).
Before that can happen, there is a preconditioning process where you’ll have several days of chemo to wipe your marrow clean. Then the cells are infused through the IV port, and within several days they set up housekeeping in your ‘empty’ marrow. Once engraftment happens, then the new blood cells and the marrow network develop again.
One of my close friends, whom I met almost 7 years ago while we were both having our bone marrow transplants at Mayo, had MF. She and I are both in our 70s, feeling energetic, healthy and enjoying our 2nd changes at life. We live several states apart but stay in touch frequently. Without the transplants we would both be long gone by now. So, while bone marrow transplantation can be risky and challenging, the rewards of a second chance can definitely outweigh the risks.
My personal story and that of many other members in Connect be found in this discussion:
My BMT Story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
When you and your doctor make the decision to proceed with the BMT, that is when the donor search happens. You don’t have to do it yourself, your transplant team takes care of that. Because a BMT is a complex procedure, it’s very important to have this done in a facility where there is a depth of experience such as a larger teaching/research hospital or clinic.
Do you have any specific questions? Is there a timeline your doctor has discussed with you?