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.

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

@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.

@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.

@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?

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.

Liked by Mom of three

@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?

.

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

@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!

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!

I was diagnosed 8 years ago with it and that is because of pain in my spleen from being enlarged. I have gone and had blood tests monthly then pint of blood taken monthly and just got on medicine. I have had scans of my bone marrow from a biopsy in the past as well.

please give me info how to reconnect on Mayo connect Is there a phone number to call?

@damari

please give me info how to reconnect on Mayo connect Is there a phone number to call?

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I don’t know if there is a number to call or not to be honest

@damari

please give me info how to reconnect on Mayo connect Is there a phone number to call?

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Hello @damari, do you mind explaining more about what number you are looking for exactly?

Not sure if this is the place to write a follow up note. I have written before as ESPERANZA but the format for commenting is very unclear to me. SO if it needs to be placed somewhere else, please do so. I have been diagnosed with ET and positive JAK2 about 4 years ago (MAY2015). Here is the latest on what I have been going through.
It has been awhile since I commented here. I have been sick. My platelets have been higher than usual, since I have been on Hydrea (2 a day, 7 days a week) and they have been controlled until recently. So y Oncologist increased my dosage to 3 a day for the last 6 weeks. However, a strange thing happened. Back in January I had a bone marrow biopsy to see if my ET had possibly morphed into MYELOFIBROSIS and maybe it would explain the leg and hip pain I have had for almost a year. Well, it came back negative fo MYELOFIBROSIS but positive for MYELODYSPLASIA and some anemia. I was told I would have to start the VIDAZA injections 5 days a month for months or years possibly. I was approved by Medicare and scheduled for these treatments. A few days before they were to begin, I went back for blood work and my red and white cells were so improved that the Doctor postponed the injections fro 6 weeks. After 6 weeks, the MYELODYSPLASIA did not even show up in my blood work. I must give credit to GOD. I had prayed that HE take away at least one of my conditions, as I have quite a few. Well, even though I have had to increase the HYDREA, (platelets did finally come down to the 430,000's from the mid 600,000 where they were with the 2 HYDREA a day.
I spent a week in the hospital after that, since I had a terrible pain in my left shoulder blade all the way through to my chest. After waiting for it to calm down, it actually grew worse and after a visit to the ER they hospitalized me for a complete cardiac workup. Praise the Lord my heart was OK, no blood clots, no pneumonia, but after all that, all I could think of (I had had no falls or known injuries) was the VEST machine that my pulmonologist had sent and I had been using for about 6 weeks. I did not have the actual vest, but a wrap around. If anyone knows what this is, it is a machine that vibrates your chest and helps clear the secretions our of your lungs to avoid pneumonia and asthma exacerbation. Well, after the cardiologist sent me for x-rays of my ribs; sure enough, I had about a 2 week old fractured rib which was causing the pain. Now, I am on a waiting list for one of the other problems I have to be addressed which is a complete left hip replacement. So, I am praying my platelets stay stable, as well as everything else so I can have this surgery.
One of the concerns I have in the near future is that for this surgery I will have to be off of ALL aspirin and platelet medicines (HYDREA) for 7 days. Not sure how my platelets will react and will it affect my surgery and post surgery treatment?
I guess we will find out. My Oncologist has said I could hold one day of HYDREA and I have to tell her what the ORTHOPEDIC doctor says of holding all blood and platelet thinners for 7 days prior to surgery.
Oh, the complications that can arise when several things do wrong with these bodies.

@esperanzam

Not sure if this is the place to write a follow up note. I have written before as ESPERANZA but the format for commenting is very unclear to me. SO if it needs to be placed somewhere else, please do so. I have been diagnosed with ET and positive JAK2 about 4 years ago (MAY2015). Here is the latest on what I have been going through.
It has been awhile since I commented here. I have been sick. My platelets have been higher than usual, since I have been on Hydrea (2 a day, 7 days a week) and they have been controlled until recently. So y Oncologist increased my dosage to 3 a day for the last 6 weeks. However, a strange thing happened. Back in January I had a bone marrow biopsy to see if my ET had possibly morphed into MYELOFIBROSIS and maybe it would explain the leg and hip pain I have had for almost a year. Well, it came back negative fo MYELOFIBROSIS but positive for MYELODYSPLASIA and some anemia. I was told I would have to start the VIDAZA injections 5 days a month for months or years possibly. I was approved by Medicare and scheduled for these treatments. A few days before they were to begin, I went back for blood work and my red and white cells were so improved that the Doctor postponed the injections fro 6 weeks. After 6 weeks, the MYELODYSPLASIA did not even show up in my blood work. I must give credit to GOD. I had prayed that HE take away at least one of my conditions, as I have quite a few. Well, even though I have had to increase the HYDREA, (platelets did finally come down to the 430,000's from the mid 600,000 where they were with the 2 HYDREA a day.
I spent a week in the hospital after that, since I had a terrible pain in my left shoulder blade all the way through to my chest. After waiting for it to calm down, it actually grew worse and after a visit to the ER they hospitalized me for a complete cardiac workup. Praise the Lord my heart was OK, no blood clots, no pneumonia, but after all that, all I could think of (I had had no falls or known injuries) was the VEST machine that my pulmonologist had sent and I had been using for about 6 weeks. I did not have the actual vest, but a wrap around. If anyone knows what this is, it is a machine that vibrates your chest and helps clear the secretions our of your lungs to avoid pneumonia and asthma exacerbation. Well, after the cardiologist sent me for x-rays of my ribs; sure enough, I had about a 2 week old fractured rib which was causing the pain. Now, I am on a waiting list for one of the other problems I have to be addressed which is a complete left hip replacement. So, I am praying my platelets stay stable, as well as everything else so I can have this surgery.
One of the concerns I have in the near future is that for this surgery I will have to be off of ALL aspirin and platelet medicines (HYDREA) for 7 days. Not sure how my platelets will react and will it affect my surgery and post surgery treatment?
I guess we will find out. My Oncologist has said I could hold one day of HYDREA and I have to tell her what the ORTHOPEDIC doctor says of holding all blood and platelet thinners for 7 days prior to surgery.
Oh, the complications that can arise when several things do wrong with these bodies.

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A P.S. I quess: and I know there is probably no good/clear answer but one cannot help but wonder what effects on the body, (bones) etc the HYDREA has. I know that without it I would probably have worse consequences but I guess we will all have to wait and see what the long term effects of this chemo has on who and how many. That is one thing I think is beneficial about sharing on a place like this with many others who are experiencing same and possibly different things.

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