Starting 17th year with ET. What's ahead?

Lynnvb, did you ever figure out what mutation was driving your ET?

Yes I said it was Calr in the first sentence

Hi,
I think you are correct in that. I had NGS.

I am not sure about NGS. I don't that that was tested as I had the testing done many years ago. Maybe they were not doing it then.
I see my hem onc on Thursday. I will ask him.

Thanks for the response. Glad to hear you are doing well!

I have to work to keep weight off because congenital back/heart trouble restricts activity. The cardiologist says not to expect to feel better after the mitral valve repair, just not to get worse. So I don't have a lot of impetus to get that fixed asap. However, my Medicare plan is being "revised" in 2026, so may have repair this year so as not to have insurance surprises.

After my husband's heart attack we both benefited from his new diet, especially in cholesterol levels. I also lost a bit of weight. Sadly the Season of Too Many Cookies and Binge Viewing is upon us, so back to some heightened vigilance about diet and exercise. One of these years it will sink in that the aftermath of holiday sugar and starch isn't worth the momentary pleasure.

My oncologist has been encouraging but vague about ET patients' long-term prognosis, especially CALR, and the long-term effects of HU on co-morbidities.

I get blood checks every three months, but only see her yearly. She suggested every 6 months, but I hate driving in the city and got her to agree to yearly visits if I was assiduous abt blood checks and calling in with any problems.

As things go, I feel well enough to do the things I enjoy except for riding a bike outdoors. Used to be able to go miles and miles out past the cornfields here and see wildlife. Last time I tried I got too dizzy.

Thanks for you thoughts. Good to connect with another long-timer.

Yikes, this was long-winded. Sorry!

My concern, moving into 17 years after ET started driving up my platelets, is that the phase of feeling "great" or even "pretty good for my age" feels like it's coming to a close.

I have co-morbidities, which have symptoms similar to ET (increasing fatigue, dizziness), and that makes teasing out and treating the root cause tough.

And, at 70, I get very discouraged hearing about how great others older than me are doing. My parents lived into their 80s (even my dad with ET). I have better health habits than my patents (no smoking, no alcohol abuse, no bad diet, more activity). But I feel like my quality of life is dwindling no matter how hard I try to maintain and "be positive."

So I would like to hear from folks about coping with this next phase. Right now, diving into books and knitting projects helps. But people kinda wear me out these days, especially if they want to socialize outside my peak window between 1 and 5 pm.

@nohrt4me: I was diagnosed with ET when I was 50 with JAK2. 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 did I have fatigue issues. Then 2 years ago, at age 68, my ET converted into secondary ET myelofibrosis (“MF”). My main issues with MF were severe anemia from dropping hemoglobin levels and shortness of breath. 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, which my coal hem/onc agreed. MDA recommended that I consider these options in order: (1) a clinical trial, (2) pacritinib or momelotinib oral drugs and (3) a SCT. I first tried a MDA 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 raising my hemoglobin levels and stretching out the periods I needed transfusions. 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 and a 12/12 match. After 4 weeks in the hospital (I elected to do this in my hometown of Memphis vs. MDA or Vanderbilt), I have been recovering 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. Good luck to you!