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JAK2 Mutation - Effects and Questions
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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You say your hematologist isn't giving you any information..well that in itself is a problem if not him you should be educated by a Nurse Practiner or the like..I believe and agree you should do your own research however, I would be concerned the information from word of mouth or Internet would be safe..Always check with your hematologist before making any changes. Also, it's ok to get a second opinion, your hematologist needs to be a good fit.......
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2 Reactions@leene808
I have a very good Hemo/Oncologist/researcher at University of Louisville Hospital. He says that iron supplements are not a good idea for us PV folks as they tend to stimulate RBC production… and undoes the work that the HU is doing. Your PCP won’t know that. So nail down your hematologist on that… don’t let him get away with not sharing information.
Also, check this out…
https://www.mympnteam.com/resources/supplements-for-polycythemia-vera-to-take-and-to-avoid
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2 Reactions@pineyb Thank you for sharing this. I take vitamin D and omega supplements. I stopped taking vitamin c a couple of months ago after reading it may cause a production in red blood cells. I do eat an orange and take a zinc daily to try to prevent colds etc.
It is difficult to find web sites that aid in finding dos and don’ts of what one should do.
@christinele
While my oncologist recommends against iron, B12, and other supplements, he does encourage getting those things from food… within reason. He thinks the delivery from food is less extreme than the pharmaceutical version…