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.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Thank you for your quick response. Can you help me understand a bit more?--he said the platelet numbers indicate ET. Then he said the test was positive for JAK 2. Then I read the definition of policythemia vera and it sounded like JAK 2. When i go to the dr. what more should I ask? Are there variations of JAK2/polycythemia vera to be aware of. Presently a baby aspirin has been prescribed but a discussion of possible medication is to be discussed. Any added help is much appreciated. Thanks so much!
Yes it is!
Is JAK 2 the same as policythemia vera. My dr. said only that the test was positive for JAC 2.
Thank you for answering.. What medication do you take?
.
I can't give any general advice that is proven to aid everyone, but I can share with you my personal experiences. When I have drastically reduced my intake of carbohydrates and sugar, I have seen a significant slowdown in the rise of my hematocrit. Eating breads, grains, and processed foods I generally require a phlebotomy every 4 weeks. When I am in a state of nutritional ketosis, I find that I can go three to four months between phlebotomies. Your mileage may very, but this is what I have experienced over the past three years.
I continue to read about the effects of certain foods on JAK 2 I would like to know if anyone has also done some similar reading? Also, is there an optimum diet to follow? What foods should be avoided/eaten?
Thank you for the information. I'll pass along to my son.
Yes, I have read this and also things like Shitake Mushrooms. I asked Haematologist and he dismissed that in a huff. For me, I don’t see why foods would not help, since diet seems to affect health in general. If there is a chance foods help to lower platelets..I think that beats taking huge amounts of Hydroxyurea. You bet I eat shitake mushrooms etc.
My Doctor wants my platelets below 400,000, in order to accomplish that it was necessary for me to be on Hydrea 500mg 3days a week and 81 mg. aspirin daily. I must add that I also have Essential Thrombocytosis, Hope this helps. My understanding is below 400,000 cuts the risk of blood clots significantly. Hope I am of help. When in doubt, I always believe in second opinions. Blessings
My son is almost 47 and has been dealing with high platelet count 750,000 for about five years. Hematologist put him on 81mg aspirin and monitors every three months CBC. No jak2 mutatation. I wonder if he should pursue with Dr. the hydra meds? No mention of that yet.