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How did you make the final decision to begin HU protocol for ET?

Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)
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@erikaerika

That was a typo. I was diagnosed with ET... I couldn't edit after I had posted.

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Replies to "That was a typo. I was diagnosed with ET... I couldn't edit after I had posted."
eileen11108 | @eileen11108 | Jan 21, 2023

Erikaerika,
I just looked at NIH.gov and as of 2020 the median survival age of people with ET age 40 or under was 35 years. So some live longer than that.

Have you had a bone marrow biopsy and do you have a mutation such as JAK2?

You could consider getting a second opinion with an MPN specialist who handles a higher caseload of rare diseases like, ET, PV and Myelofibrosis.

Best wishes to you, Eileen

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