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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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carlsonte | @carlsonte | Mar 10, 2019
In reply to @patrickbernath "Hello, first I’m sorry if they are mistakes in the text since my first language is..." + (show)
@patrickbernath

Hello, first I’m sorry if they are mistakes in the text since my first language is french.
I was diagnosed with a high platelets number aroun 2004. At that time, the doctor tought that it could be inflammatory problems or pills leading to this. My platelets went up very slowly from 400 000 to more then a million. Later, it went from hyper platelets to ET. Around 700 000, my hematologist puted me on aspirin. Around 2009 he took a piece of bone narrow for a Jak 2 test wich came back negative from the lab. Years later, the simple blood test came and I tested positive to the mutation on that blood test. After some reserch, I found out that around 2002, I started having skin itching like hell when coming out from a bath or shower, or doind sports while having transpiration. A study came years later saying that patients with ET or myelo decease were about 30% to have this problem.
2 years ago around Christmas I starded having headeachs all the time, so I started to panic. I asked my family md to have a blood test. I went from 750 000 to more then a million platelets count in 2 months. Had lots of tests done in neuro but all was good. Started pills for those headeachs and started Hydrea 500 once every 3 days. Then it went up and up and up like 112-112 then 121212 and 22222 so 2 per day everyday and 232 and now 3 a day to have platelets between 340 000 and 400 000, wish is what my hematologist is aming for.
Not long adter starting Hydrea, my skin rash coming from water or pursparation came to a stop.
It was really a nightmare all those years.
I am to looking the net to see if there a new research, but not much is going on.
I am 51 so found out around 2004 and starded Hydrea in 2016. It went up very very slowly.
Side effects of Hydrea on me is more or less fatigue. I go to the gym, sane there, a normal training take the energy as if I did a big one. But it is better to keep the shape.
If you have questions, don’t hesitate, I am new here from today. Hopes this helps.

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Thank you for the information. I’ll pass along to my son, who is 46.

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vsternick | @vsternick | Mar 17, 2019

My Naturopathic Physician suggested I see a Oncologist or Hemotologist in 2013 because my Platelets were increasing to 1.5 million. I started to see a local Onocologist and was told I have a JAK2 mutation and Polycythemia Vera. I started taking Anagrelide (stopped working), Hydroxyurea (bad side effects) and then Jackafi in August 2018. I was seeing my local oncologist about once a month with blood draws. In February 2019 when my white blood cells were increasing and platelets dropping I was referred to Seattle Cancer Care Alliance (SCCA). Dr Colin Godwin (SCCA:) told me I was in the early stages of Acute Leukemia. He said he would contact the Stem Cell Transplant Team to start looking for a match for me to get a stem cell transplant. My local oncologist put me back on Hydroxyurea to control the white blood cells. I met with a Transplant Team Doctor (SCCA) on Friday, March 15th and found that my brother is a 50% match and they will start looking for a 100% match for me. I will spend approximately 100 days in Seattle to go through the tests, chemotherapy and Stem Cell Transplant. I am 67 and since I want to live, I have elected to have the Stem Cell Transplant done. It is not always an easy recovery period but I hope to remain strong and survive.

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damari | @damari | Apr 5, 2019

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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3 replies
lisadej1 | @lisadej1 | 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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No I haven't heard and my doctor hasn't mentioned but thank you I'm definitely going to look at this. Can you share anything you have?

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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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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
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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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.

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!

Jump to this post

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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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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