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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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
Hi, I'm jumping in because I have ET with Jak2 positive. I am on Hydrea 500mg a day, 4days a week and a aspirin daily. I don't think I am having side effects but I also have COPD & new stomach issuses , which the stomach upset could be related to the Hydrea but there has been no confirmation.
@misty45 Thank you so very much for sharing your ET experience. My daughter ( age 39) was diagnosed with ET a few months ago- not JAK2 but CALR. She started Hydrea 1 pill - platelets went from 1.5 million to 900,000 added another 1/2 pill every other day - platelets down 800,000. Due to the long term use of Hydrea she changed to interferon. After 3 weeks on interferon her platelets are back to 1.2 million. Can you tell me how many Hydrea pills you take each day? I am thankful you are responding to the Hydrea and no symptoms.
@ettap
I was wondering if you could give me any updates on your case. I have a similar case, jak2 postive , was told i have ET although my latest blood test was all within normal range. Usually have high platelet counts, just a little higher than border line. I feel normal, but worried. Im on baby asipirine once/2days. The more you read the more you freak out.
Thanks chadknudson. It's great to hear a positive experience, and your response makes me hopeful that the effects will be minimal.