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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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@esperanzam thank you so much for this information. I pray you get good results from your biopsy. It really helps when I connect with real people concerning ET. It is still so new to my family.
@Susan Ellis I take 2 Hydrea a day every day. Up until recently it kept them between 350,000 and 400,000. Recently they have gone up with no changes in dosage. Had a bone marrow biopsy 2 days ago (no results yet) to see it there have been any changes in disease (ET) with JAK-2
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1 ReactionWould you mind keeping me posted on what you noticed? I have ms as well and they saying not related to that so wondering if to the blood
I do have those symptoms, ET. Not sure if its because of some medication im taking for my thyroid or if its tension. Hopefully will know soon since ill stop medication for few days and observe
That is what I have and what my treatments are as well I just do not know much about it at all
I was diagnosed at age 46 with Polycythemia Vera and am JAK-2 positive. My treatments have been monthly bloodwork and phlebotomies when my hematocrit exceeds 45. I was put on an aspirin regimen where I take one 81mg aspirin daily, put on a hypertension medicine, and other than that I just focus on eating healthy and getting exercise.
Ok thank you
I am JAK-2 positive and I have not experienced back spasms, left side pains, left shoulder pain or neck pain.
The other thing i am wondering is at what age where you diagnosed and what the treatments have been?? My doctor wants to take pints of blood monthly from me (which hurts and leaves my veins hurting) because medication is not an option as would have to be on it for the rest of my life. What is everyone else doing??
I have a question and this might already have been discussed but has anyone ever had back spasms/ left side back pain, left shoulder pain and or neck pain?? I Have MS in my Brain and had pushed it off to but now i am questioning if the Jak 2 is causing it. Any suggestions or thoughts? TIA