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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chadknudson | @chadknudson | Jan 23, 2019

In reply to @ajordan1982 "I have a question and this might already have been discussed but has anyone ever had..." + (show)

I am JAK-2 positive and I have not experienced back spasms, left side pains, left shoulder pain or neck pain.

ajordan1982 | @ajordan1982 | Jan 23, 2019

In reply to @chadknudson "I am JAK-2 positive and I have not experienced back spasms, left side pains, left shoulder..." + (show)

Ok thank you

chadknudson | @chadknudson | Jan 23, 2019

In reply to @ajordan1982 "The other thing i am wondering is at what age where you diagnosed and what the..." + (show)

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.

ajordan1982 | @ajordan1982 | Jan 23, 2019

That is what I have and what my treatments are as well I just do not know much about it at all

joseph0117 | @joseph0117 | Jan 23, 2019

In reply to @ajordan1982 "I have a question and this might already have been discussed but has anyone ever had..." + (show)

I do have those symptoms, ET. Not sure if its because of some medication im taking for my thyroid or if its tension. Hopefully will know soon since ill stop medication for few days and observe

ajordan1982 | @ajordan1982 | Jan 23, 2019

Would you mind keeping me posted on what you noticed? I have ms as well and they saying not related to that so wondering if to the blood

esperanzam | @esperanzam | Jan 24, 2019

In reply to @susanellis "@misty45 Thank you so very much for sharing your ET experience. My daughter ( age 39)..." + (show)

@Susan Ellis I take 2 Hydrea a day every day. Up until recently it kept them between 350,000 and 400,000. Recently they have gone up with no changes in dosage. Had a bone marrow biopsy 2 days ago (no results yet) to see it there have been any changes in disease (ET) with JAK-2

susanellis | @susanellis | Jan 24, 2019

In reply to @esperanzam "@Susan Ellis I take 2 Hydrea a day every day. Up until recently it kept them..." + (show)

@esperanzam thank you so much for this information. I pray you get good results from your biopsy. It really helps when I connect with real people concerning ET. It is still so new to my family.

lisadej1 | @lisadej1 | Jan 26, 2019

In reply to @susanellis "@esperanzam thank you so much for this information. I pray you get good results from your..." + (show)

I am + JAK2 and just had a biopsy and they still don't know for certain that I have ET but my blood work is normal except my platlets are high in the 580s. I had a stroke last year and I'm only 49 the main symptom was numbness and tingling in my hands and after the stroke burning sensation in my feet. Nobody was listening to me until I pushed for further testing and was positive. They have started me on hydrea and no bad side effects. Just hope it brings my platlets down so I don't have another stroke.

esperanzam | @esperanzam | Jan 26, 2019

In reply to @susanellis "@esperanzam thank you so much for this information. I pray you get good results from your..." + (show)

@susanellis@I do know what you mean about connecting with others who have the same thing you do. It is not easily understood. Most know I have Thrombocythemia but since I have had some complications and changes, when they found out I am actually on chemo and it is cancer, they are shocked. I have had very little if any side effects from the Hydrea for 3 1/2 years. I am thankful. Thanks for the best wishes. I do have lung problems and other things but we are trying to figure out what is what and if the ET has changed and treatment needs to changed. Sometimes it is hard to sort it all out, especially for doctors who do not specialize in these conditions. I should have the results from the bone marrow biopsy which I had this past Tuesday in 2- 2 1/2 weeks. Maybe this will provide some answers for my newest problems.

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