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Living with ET

Blood Cancers & Disorders | Last Active: Jun 7 7:41am | Replies (27)

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@ tinak123

I am 70 YO, and was diagnosed with ET when I was 50. I was later found to be JAK2+. My then-hem/onc wanted me or start HU and baby aspirin, but I was hesitant about taking HU. So, I started out on anagrelide, which lowered my platelet counts to the normal range for about 8 years. When it stopped being effective, I was then put on Jakafi for about 10 years before I converted to myelofibrosis and had a successful allogeneic stem cell transplant last year. I am not sure about HU or anagralide, but Jakafi does increase your risk for skin cancers. During my time with ET, I was asymptomatic and enjoyed a very active lifestyle. I did develop several squamous cell carcinomas that were successfully removed with Mohs surgery.

After I converted to myelofibrosis, the anemia did start having a big effect on my activity as I started having shortness of breath from the anemia. When I got a second opinion on my myelofibrosis diagnosis and possible treatment options at MD Anderson, the MPN specialist doctor did tell me that the longer one has ET the greater the odds are that it will convert to myelofibrosis as mine had, but he did not give a timeline. When I discussed this with my local hem/onc, he concurred.

All of that said, hopefully you have a good hem/onc that has MPN experience and can guide you on your treatment options. Staying active and keeping a positive attitude is most beneficial IMHO. Good luck!

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Replies to "@ tinak123 I am 70 YO, and was diagnosed with ET when I was 50. I..."

@mikecaldwell
Can you tell me what drug is HU? I have not heard of that one.