JAK2 Mutation - Effects and Questions

Posted by ettap @ettap, Mar 29, 2018

Have JAK2 mutation verified twice; one year apart and from different labs. As I understand, it may cause polycythemia vera, essential thrombocytosis, or leukemia. My hematologist has not provided any real info on this mutation so I've been researching via internet. I knew leukemia is cancer but was disappointed to find out today that the other 2 are blood cancers as well. I have been seeing a hematologist every 3 mos. about this since my 2nd blood clotting event in 09/2016. To date, all my blood factors have been in the normal range. Here are some of my questions: 1. Is it typical to verify this mutation well before it triggers one of these diseases? 2. I know early detection of cancer can be a real plus, but is there any research or experience that supports proactive steps that can be taken to deter the onset of any of these possibilities? 3. With polycythemia vera and essential thrombocytosis, is blood letting the primary treatment? If so, can the blood be donated? 4. Since none of my blood factors have ever been out of the normal range to date, no specific result of the JAK2 mutation has raised its ugly head. Is this normal? I'm not typically a worrier. In fact, I do really well with things like this once I know what I am dealing with. Information becomes my sword which allows me to take worry and nip it in the bud.

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Yes unfortunately that is true. For years after my mom passed from Myelofibrosis I donate to help replace the over 100 units of blood she had used the last 3 weeks of her life. But once I got my diagnosis of PV, I was told that they could not take my blood anymore. So disappointing. Today I am due for my routine blood draw and I have to watch them through it away.

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@jerrlin

I have the same situation and my oncologist put me on hydroxyurea 500 mg a day. Within 2 weeks, my platelets dropped from 337 to 57. He has taken me off hydroxyurea and new blood tests in 2 weeks. I asked him your question and he told me that I am at high risk of blood clots because I have the Jak 2 and the drug helps protect me from that. Does anyone have any other information?

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I was dx 14 years ago. I have been taking 1000 mg of Hydrea everyday. My Feritin is 4 and my red cells and platelets are very high.
I have phlebotomies whenever I start to feel bad, other than that, I have been ok. I am always tired.
Not sure why my feritin is so low, but my dr. Has said that is normal.

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@janemc

An oncology nurse told me that blood withdrawn from people with blood disorders/cancers is discarded.

And the Red Cross, to which I had regularly donated for years, told me my ET diagnosis means I can no longer do so.

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I was wondering about that. I donated also. Guess it's all over with PMF

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