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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@mumma

Does anyone else have severe itching and tingling all over really bad at night
I have poly Vera and jak2 and am on hydroxy with monitored bloods

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Yes, unfortunately pruritus (itchy skin) is a common side effect. I have it as well and continuing to look for ways to lessen it. I get severe flair ups from contact with water, showering, even getting caught in the rain. Just started taking melatonin at night with 1/2 Benadryl which helps sleeping (recommended by nurse at hematologist). I also found regular application of Trader Joe’s coconut body butter helps. If anyone else has other suggestions I’m open to hearing as well.
Hope you find relief!

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@mumma

Does anyone else have severe itching and tingling all over really bad at night
I have poly Vera and jak2 and am on hydroxy with monitored bloods

Jump to this post

Yes, but I itch random times of the day. It’s really frustrating. I find antihistamines help but don’t stop it all. I haven’t found any creams that work. Like you, searching for an answer.

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@ettap
Have you had a bone marrow biopsy? I understand the labs and the bone marrow biopsy to diagnose?

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