I Have PV With JAK2 Mutation, Allele Burden 42%. Just Found Out I Have 4 Other Mutations ASXL1, CUX1, NF1, TET2. Anyone Else? Meaning? | myMPNteam

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I Have PV With JAK2 Mutation, Allele Burden 42%. Just Found Out I Have 4 Other Mutations ASXL1, CUX1, NF1, TET2. Anyone Else? Meaning?
A myMPNteam Member asked a question 💭

My primary hematologist just said they had "unknown significance". When I look online I see in Blood Cancer Journal that the ASXL1 "confers poor prognosis" (Chinese study).

posted February 8, 2021
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A myMPNteam Member

ASXL1 and TET2 are considered high molecular risk mutations (HMR). The others, not being found to be associated with higher risk are probably labeled, "of unknown significance", part of the up to 200 mutations now being screened for. Given the two added mutations, your relative risk category will be higher, meaning that your MPN specialist will treat you somewhat more aggressively and probably keep a closer eye on your lab results. Hopefully, you have a thorough conversation with them about all options including SCT.

posted April 19, 2021
A myMPNteam Member

Great answer, Glen! I could not agree more. NGS Cytogenetics screening is very important to drive treatment plan decisions.

posted April 19, 2023
A myMPNteam Member

I also have been newly diagnosed with ASXL1 & it is so rare, I have been given some articles on it & I am interested in how others who have ASXL1 are managing this. Perhaps we can share information on what we have found out. 🙂

posted April 4, 2023
A myMPNteam Member

I also have ASXL1. My understanding is that it increases the risk of progression but it is not clear yet how much. It does not change the treatment at all so I had one doctor question why I even had the test done. But my other doctor who is an MPN specialist told me that it would provide more information on my prognosis. I would love to know anything you learn.

posted March 16, 2021
A myMPNteam Member

Hi I have Jax 5 mutation but did not even hear of the others? How did you know of them? blood tests??

posted March 8, 2021

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