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Stem Cell Replacement

Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (9)

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@mikecaldwell

I was diagnosed with ET when I was 50. My platelet level was successfully controlled with anagrelide for 7-8 years. After it started being less effective, my hem/onc doctor switched me to Jakafi, which was not common to use for ET at the time, but it successfully controlled my platelet count for 10 years. I also took aspirin daily. At no time during my ET diagnosis was I told that that I needed to consider a SCT. Then 2 years ago, at age 68, my ET converted into secondary ET myelofibrosis (“MF”). My main issue with MF was severe anemia and dropping hemoglobin levels. I had to start getting regular transfusions to keep my hemoglobin above 7.0. When I went to MD Anderson for a second opinion, my doctor there told me that if you have ET as long as I had, it was pretty certain that it would eventually convert to MF. MDA recommended that I consider these options in order: a clinical trial, pacritinib or momelotinib drugs and SCT. I first tried the recommended clinical trial, but closer to home at Vanderbilt, It was not successful for me so I then tried pacritinib with no success. I then switched to momelotinib with some success. But, a BMB determined that the fibrosis in my bone marrow was increasing and I was told by my local hem/onc that I needed to consider a SCT or risk a likely conversion to AML, which would make a SCT even riskier given my age at the time, 69. I had no comorbidities and was in good physical shape, so I had an allogeneic SCT in October 2024. My donor was an unrelated 28 YO male from Germany. After 4 weeks in the hospital (I elected to do this in my hometown of Memphis vs. MDA or Vanderbilt), I have recovered at home with no infections and my most recent BMB shows me to be in remission. Recent blood tests show I continue to have 100% engraftment with donor cells. I do have some Graft vs Host Disease issues, but they are manageable so far. I feel most fortunate in my journey. This is likely more information than wanted, but that has been my experience that started with ET 20 years ago.

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Replies to "I was diagnosed with ET when I was 50. My platelet level was successfully controlled with..."

I'm so glad for you! Does insurance cover SCT or did you have to pay out of pocket?