Stem Cell Replacement

A transplant is the only cure, although not without risks, especially for the aged.

I had primary CNS lymphoma & had stem cell transplant at age 58. That was 6 years ago. I am cured!

Welcome to Connect, @shellep16 As fellow member @eloise999 mentioned, an allogenic SCT (using donor cells) would be the only potential cure for ET. Most often myeloproliferative diseases such as essential thrombocythemia (ET) or polycythemia vera (PV) are treated with medications such as Hydroxyurea, Jakafi, Besremi, etc..
Since it is a complex procedure with its own potential side effects, a bone marrow transplant, from my understanding, is reserved for patients with advanced ET or PV.

Having had an allogenic transplant myself for AML, it is a rigorous process with a lengthy recovery time. But certainly worth the effort for being able to have a 2nd chance at life.
Since you were recently diagnosed with ET, has your doctor suggested alternative treatment options besides the transplant? Did they feel you were at higher risk for developing AML? What were the mutations, such as JAK2, CALR, listed for with your diagnosis?

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.

mikecaldwell---------Amazing journeys we are on. As a platelet donor for 25 years with the Red Cross i only dreamed of being a donor of more than platelets to someone. an HLA match twice at the hospital down the street called City of Hope. But what i did not know is they prefer a donor in the early 20's and preferably a male for the transplanted cells. In the last few years, the Red Cross App let us know in what city our platelets were sent to. Many times, local, many times out of state. A Shelf life if 5 days. Tested and sent out. Hundreds and hundreds and hundreds of donations. I had always thought one day I may have skin cancer like my parents. But more was revealed.
In June of 2021 i donated my last platelets as i was treated for breast cancer. With that i received two whole blood and one set of platelets. With my transplant I received for my MDS, I received a 26-year-old donors' cells from Europe. A perfect 10/10 match. So far at over 420 plus days i am 100 % donor but i still read A blood type and not his 0. (I used to donate blood but so many are A i realized platelets would be more valuable to more. Both my brothers donate platelets.) This I found out June 6th. My nurse said no worries. As long as my chimerism is 100% it will change.
BMT with our transplants teams has come a long, long way. The sharing here is most often from people who have had the SCT.

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

I just got my diagnosis. I'm only 57 and for now they are saying only a daily aspirin. They will treat when I turn 60. Since I'll still be so young, I definitely want to look into SCT. I can only think that in 2 years it will be even better!