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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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damari | @damari | Apr 12, 2019

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!

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ajordan1982 | @ajordan1982 | Apr 12, 2019
In reply to @damari "Is JAK 2 the same as policythemia vera. My dr. said only that the test was..." + (show)
@damari

Is JAK 2 the same as policythemia vera. My dr. said only that the test was positive for JAC 2.

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Yes it is!

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damari | @damari | Apr 12, 2019

Is JAK 2 the same as policythemia vera. My dr. said only that the test was positive for JAC 2.

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1 reply
damari | @damari | Apr 12, 2019
In reply to @chadknudson "I can't give any general advice that is proven to aid everyone, but I can share..." + (show)
@chadknudson

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.

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Thank you for answering.. What medication do you take?

.

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chadknudson | @chadknudson | Apr 12, 2019

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.

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1 reply
damari | @damari | Apr 12, 2019
In reply to @damari "I have read that there are certain foods that can naturally affect platelets--either raise or lower..." + (show)
@damari

I have read that there are certain foods that can naturally affect platelets--either raise or lower them.. Several articles talk about the lowering effect of cranberry juice and some fruits such as strawberries or other berries. Have any of you seen similar studies posted or had discussions with your doctors about natural options along with baby aspirin and/or medication? Thanks so much!

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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?

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carlsonte | @carlsonte | Apr 5, 2019
In reply to @carlavan "My Doctor wants my platelets below 400,000, in order to accomplish that it was necessary for..." + (show)
@carlavan

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

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Thank you for the information. I'll pass along to my son.

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huronshores | @huronshores | Apr 5, 2019
In reply to @damari "I have read that there are certain foods that can naturally affect platelets--either raise or lower..." + (show)
@damari

I have read that there are certain foods that can naturally affect platelets--either raise or lower them.. Several articles talk about the lowering effect of cranberry juice and some fruits such as strawberries or other berries. Have any of you seen similar studies posted or had discussions with your doctors about natural options along with baby aspirin and/or medication? Thanks so much!

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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.

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carlavan | @carlavan | Apr 5, 2019

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

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1 reply
carlsonte | @carlsonte | Apr 5, 2019
In reply to @misty45 "I'm happy to share my experience. #1. No, do not need to give blood. The Hydrea..." + (show)
@misty45

I'm happy to share my experience. #1. No, do not need to give blood. The Hydrea is toxic enough to kill the excess platelets. #2. I have experimented over the years to cut back a little from the prescribed dosage simply to minimize the amount of toxicity I'm consuming. My Docs have not liked this kind of fooling around with the dosage. So I've been steady at 6 days a week, no Sundays for about a year. No side effects from the Hydrea after the initial first month twenty years ago. #3. I still have no symptoms of this strange blood disorder called ET, regardless what my count is on any given day. I go every 3 months for a cbc. It puzzles me that at 72, I still feel the same with a count of 480 as I did at age 40 when I was diagnosed with a count of 800. #4. My two Docs (first one retired) have dangled the ultimate fear over me since the diagnosis, but so far my ET has not morphed into leukemia. Having no symptoms and in disbelief, I went to the Scottsdale Mayo Clinic for a second opinion at some point in the 1990s. Same diagnosis. Very disappointing because I was really convinced that nothing was wrong with me. Thanks for sharing the NIH info. I always like to run across updated information on PV,ET, and other blood disorders. You may never progress to anything more advanced. Best wishes.

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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.

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