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Anyone Currently Preparing For A Stem Cell Transplant Or Recently Had One?

A myMPNteam Member asked a question šŸ’­
Boston, MA
December 30, 2024
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A myMPNteam Member

No, but I have a friend who had one in 2022 after a recurrence of multiple myeloma. It was pretty difficult, but she got thru it and regained her health.

December 30, 2024
A myMPNteam Member

YES, i had a recent stem cell transplant as i had fairly serious Myelofibrosis. As you may have heard there are levels of risk depending on your blood counts and symptoms. My outlook simply carrying on with Ruxalitinib wasn't flash. I had around 15 months to live when looking at the general population with this condition. So i opted for a Stem Cell Transplant and had our son (30 years old) who donated me his Stem Cells. This is called a Haploid Stem Cell Transplant. So NOT a complete match. It's a serious procedure so you need to do your own research and make up your own mind. I went into the procedure as a fit 69 year old and have been a fortunate survivor so far. My blood counts are recovering beautifully especially my Haemoglobin. I need to watch host versus graft disease which is another risk post the transplant. Currently i am slowly being weaned off the rejection medication and reasonably early next year i will be receiving all my vaccinations again. I am eternally grateful to our son as now i have his blood making Stem Cells in me. It can be viewed as a rebirth. The science is amazing.I am very grateful to my medical team and the hospital. I lived for three months away from home as we live quite remotely in New Zealand. I hope this has helped. Any questions get in touch.

December 30, 2024
A myMPNteam Member

Thank you Wendy!

January 7
A myMPNteam Member

Hi,
My husband has PMF and we have been looking hard at stem cell.
In answer to your question, by pure coincidence I met a woman at a meeting regarding Medicare changes and she knew she had seen me before with my husband at MUSC in Charleston, SC. I felt aa if God placed her in my path as she had stem cell for acute leukemia. She shared a lot of information. Bottom line, as others said, it was rough but she is doing great now. She looked great and looked younger than 69. She was 2 years out from stem cell. She had hers at MUSC in Charleston, SC. They have been great there and both of my husband's oncologist he has seen there are on the transplant team. The one he currently sees is Dr Alexander Coltoff and PMF is in his realm of specialty. Their specialty pharmacy goes above and beyond helping get his very expensive meds. My husband is not at this point yet, but good to know this may be an option. He is 69 and diagnosed 2 years ago.
Hope all goes well for you and prayed for you. God bless!
Wendy
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January 6
A myMPNteam Member

Gaike, thank you for sharing your experience! It is a serious procedure with a long recovery. Iā€™m glad you are doing well. How long has it been since the transplant?

January 4

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