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A myMPNteam Member asked a question 💭
Illinois City, IL

After 22 years, I transformed from ET to PV in 2023, and now suspect I am in process of transforming to MF. I have never had this test, but understand the allele burden speaks to level of risk. Thanks in advance.

May 19, 2025
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Answer Summary

Members shared mixed experiences regarding JAK2 allele burden testing, with many discovering the test only through the community despite... Read more

Members shared mixed experiences regarding JAK2 allele burden testing, with many discovering the test only through the community despite living with their MPN for years or decades, and noting that doctors do not routinely order it unless specifically requested. Several members described having their allele burden checked at diagnosis or periodically by request, with results ranging from 11% to nearly 84%, and some tracking changes over time while on treatments like interferon. A recurring theme was that while a higher allele burden can indicate more aggressive disease, doctors emphasized that stable blood counts and absence of symptoms matter more than the number itself, and that treatment decisions are based on the overall clinical picture rather than allele burden alone.

A myMPNteam Member

I believe it can be tested from a blood draw or from bone marrow. I’m going to be interested in learning the results.

May 22, 2025 (edited)
A myMPNteam Member

Actually it shows on a blood test. Mine is 11% which is not too bad. Interferon should bring it down. I think it measure the activity of the jak2

May 21, 2025
A myMPNteam Member

I asked to have it tested after hearing about it and my MPN Specialist is now tracking this every two years, as another marker. In Spring 2023 I was at a JAK2 VAF of 16% and this Spring 2025 I was at 20%.

May 19, 2025 (edited)
A myMPNteam Member

Hi MH, I am sorry to hear you feel you are progressing to MF. I had my allele burden checked at diagnosis (2019) and then a few additional times at my request. Many physicians do not routinely check, it seems. I have been taking interferon for years and wanted to know if the AB was impacted (it has steadily decreased). I think it is good to have this information, especially if you feel the disease is changing. Good luck!

May 19, 2025
A myMPNteam Member

Spoke with my Hematologist/Oncologist today. He said that while a higher JAK2 allele burden (mine is 83.98%) correlates with a more aggressive disease, as long as blood counts remain stable and I am not having symptoms it is not something to treat. And I am fortunate not to have symptoms. JAK2 inhibitors, which I am not on, have their own side effects and contraindications, he would make medication changes if warranted but not at this time. It is possible I am moving towards myelofibrosis, which would have to be confirmed by a BMB, but he is not seeing that as warranted at this time. I see him again in August for labs and an office visit.

And so, he confirms what I have read about higher allele burdens, but I’m not at another transformation just yet. It may be on the horizon, but that’s how we live with these, right?

Life with an MPN.

June 10, 2025

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A myMPNteam Member asked a question 💭
Ontario, CANADA

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