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.

@carlavan

We may be on to something. I have blamed it on my COPD, however I don't need daytime oxygen. But I sound like both of you and go to bed by 6:00, just to rest. It is nice to know that it could be not in our head. I hate being lazy. lol

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I was told i had Central Vestibular Vertigo by the best ENT in South Carolina, I got a look at my CBC and told my Doctor (PCP) I have some type of cancer and it turned out to be ET, I'm a master electrician, not a Doctor. That's the VA for you.

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@pecorara

I was told i had Central Vestibular Vertigo by the best ENT in South Carolina, I got a look at my CBC and told my Doctor (PCP) I have some type of cancer and it turned out to be ET, I'm a master electrician, not a Doctor. That's the VA for you.

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Since you mentioned ET and the VA in one sentence may I ask if you were ever stationed at Camp LeJeune. NC? If yes, we can have a conversation at the contaminated water at that military base and the fact that the toxins in that water cause MPN and MDS blood cancers as well as other cancers.

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@mjpm2406

Since you mentioned ET and the VA in one sentence may I ask if you were ever stationed at Camp LeJeune. NC? If yes, we can have a conversation at the contaminated water at that military base and the fact that the toxins in that water cause MPN and MDS blood cancers as well as other cancers.

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I’ve heard of Camp Lejeune and how ET and other blood cancers have been traced to it. Has the military acknowledged this and are they compensating individuals ? On the MPNRF site, it also mentioned electrical wiring as being suspect in the cause of ET and other MPN’s. Wonder how many other electricians have MPN.

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I have been a Master Electrician for over 50 years but I was not stationed at LeJeune but I have been on and off the base. Do you have any more information on electrician and ET?

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@sunnyside17

I’ve heard of Camp Lejeune and how ET and other blood cancers have been traced to it. Has the military acknowledged this and are they compensating individuals ? On the MPNRF site, it also mentioned electrical wiring as being suspect in the cause of ET and other MPN’s. Wonder how many other electricians have MPN.

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The Government has acknowledged that the drinking water at Camp Lejeune was contaminated from 1954 to 1987. There is a long list of cancers that they acknowledge are caused by the toxins in that water. MDS is one. If you were stationed at Camp LeJeune for 30 days or more and you are diagnosed with one of the cancers on the VA list you will be eligible for medical care a d disability from the VA.
Not sure about contractors who worked at that base.

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@pecorara

I have been a Master Electrician for over 50 years but I was not stationed at LeJeune but I have been on and off the base. Do you have any more information on electrician and ET?

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When I was diagnosed with ET in 2018 I saw on the MPNRF website that our cancer was possibly linked to electrical wiring and radiation. I just went to the site and now it just says PV and MF are linked to radiation exposure but I believe ET to be as well, just an oversight on their part. The fact that the wiring reference was removed is odd but maybe the “radiation” link encompasses wiring. Anyway, I did a quick search and found this site talking about the link to electrical wiring. I’m sure if you do some digging, you’ll find some research. I took a screenshot.

8884B626-98C8-4BCD-9AB8-C31F0E28732A

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@mjpm2406

Since you mentioned ET and the VA in one sentence may I ask if you were ever stationed at Camp LeJeune. NC? If yes, we can have a conversation at the contaminated water at that military base and the fact that the toxins in that water cause MPN and MDS blood cancers as well as other cancers.

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I know this is an old thread, but I saw the mention of Camp LeJeune. I was born at Camp LeJeune in 1970 and lived there until I was about 3. I was just diagnosed with Polycythemia Vera JAK+ a few days ago. I know about the issues associated with contaminated water. Our house was very near the dry cleaner that was the source of the contamination. It is rather upsetting to me to think that every single baby bottle me and every other baby on that base drank was poisoned. There is really no other way to state it.

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@eleanor70

I know this is an old thread, but I saw the mention of Camp LeJeune. I was born at Camp LeJeune in 1970 and lived there until I was about 3. I was just diagnosed with Polycythemia Vera JAK+ a few days ago. I know about the issues associated with contaminated water. Our house was very near the dry cleaner that was the source of the contamination. It is rather upsetting to me to think that every single baby bottle me and every other baby on that base drank was poisoned. There is really no other way to state it.

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Have you filed a lawsuit claim with the VA yet? You may be entitled to medical benefits and if your hematologist/oncologist writes a nexus letter stating that they believe your PV and JAK2 gene mutation was caused by exposure to the contaminated water at Camp LeJeune you may get disability benefits from the VA. I was a Marine stationed at Camp LeJeune and developed MDS/MPN overlap and I was awarded a 100% disability rating from the VA. You should go to the VA.gov website and check out benefits for spouses and dependents who lived at Camp LeJuene.
Good luck.

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@mjpm2406

Have you filed a lawsuit claim with the VA yet? You may be entitled to medical benefits and if your hematologist/oncologist writes a nexus letter stating that they believe your PV and JAK2 gene mutation was caused by exposure to the contaminated water at Camp LeJeune you may get disability benefits from the VA. I was a Marine stationed at Camp LeJeune and developed MDS/MPN overlap and I was awarded a 100% disability rating from the VA. You should go to the VA.gov website and check out benefits for spouses and dependents who lived at Camp LeJuene.
Good luck.

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Thank you. I was just diagnosed one week ago, but I am going to get the ball rolling on at least applying for the benefits. I at least want those who are studying the issue to know about my case. PV is so rare. I'm a Medical Librarian, so I've already done a wealth of research in one week and was shocked when I saw there are only about 100,000 people with PV in the United States.

My father is/was a Marine also. My dad did his second tour of duty in Vietnam when I was a baby. I don't want to tell my parents about my diagnosis as they will worry so much. I have my birth certificate showing I was born at the base hospital, so I'm hoping that will be enough proof that I lived on base.

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Early 70's yrs, 5 mos ago annual wellness check indicated platelet count @ 600, now exceeds 1,000. Other than that all tests at Hematologist are normal. Diagnosis is Jak-2, ET, monitoring platelets monthly w' lo dose aspirin. I'm told this is not a "game changer" and probably won't be the cause of my eventual demise. Other than mild arteriole issues I'm in good shape and burn (according to my fit watch) 1k cal biking multiple days weekly. The B12 doesn't bother my Doc. but makes me a bit anxious? In the 60's I had contact with toulene etc. in lacquer paints and carbon-tet as a cleaning agent. I'm abstaining from alcohol and transitioning to a plant based diet. Am I on the right path?

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Hello @wa34937, welcome to Connect. You may notice I moved your discussion and combined it with a discussion titled, "JAK2 mutation: Effects & Questions." I did this so you could go back and read through some of the other members' experiences and so the members who have JAK2 mutation could see your post and have a chance to respond. It sounds as though you have put yourself on a healthy lifestyle journey, which can always have benefits to your general health as well. While we wait for others to chime in on what else they have done do better their health, are you experiencing any symptoms at all, other than the understandable anxiety of a new disorder?

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@JustinMcClanahan

Hello @wa34937, welcome to Connect. You may notice I moved your discussion and combined it with a discussion titled, "JAK2 mutation: Effects & Questions." I did this so you could go back and read through some of the other members' experiences and so the members who have JAK2 mutation could see your post and have a chance to respond. It sounds as though you have put yourself on a healthy lifestyle journey, which can always have benefits to your general health as well. While we wait for others to chime in on what else they have done do better their health, are you experiencing any symptoms at all, other than the understandable anxiety of a new disorder?

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I am experiencing nothing new outside of the progression of aging at 72, my Hematologist assures me this is not a "game changer". After my mother's affliction with polymyalgia rheumatica I understand how rapidly things change, she passed losing half a hemisphere from stroke. I have read the J-2 thread, also thinking that perhaps I should have posted there. Thank you.

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Hi, im jak2 negative with continous high platelets 500-800 range im 31 asymptomatic , discovered over a routine blood test , but i did a jak2 test from another hospital and it came positive , quite worried and confused . I want to know if this jak2 status can change overtime ???
Also ive read over internet and few ppl refered me to consume rae black seed ( a plant extract or its oil said to be miracle seed for fighting blood cancers and also its chemical natural effect inhibits the proliferation of cells gone wrong eg high platelets ??) does any one has any experience with this black seeds or its oil . Pls help rgds

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@livelife

Hi, im jak2 negative with continous high platelets 500-800 range im 31 asymptomatic , discovered over a routine blood test , but i did a jak2 test from another hospital and it came positive , quite worried and confused . I want to know if this jak2 status can change overtime ???
Also ive read over internet and few ppl refered me to consume rae black seed ( a plant extract or its oil said to be miracle seed for fighting blood cancers and also its chemical natural effect inhibits the proliferation of cells gone wrong eg high platelets ??) does any one has any experience with this black seeds or its oil . Pls help rgds

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Hello @livelife, welcome to Connect. You may notice I moved your discussion and combined it with an ongoing discussion titled, "JAK2 mutation effects and questions." Typically, the Janus kinase 2 (JAK2) gene is a possible indicator for future blood cancers or diseases, but not always. As with any sort of medication, or supplement, it is always best practice to discuss with your provider or a pharmacist. @livelife, did your provider discuss next steps with you as far as management and whether or not it is something you are going to continue to monitor?

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@JustinMcClanahan

Hello @livelife, welcome to Connect. You may notice I moved your discussion and combined it with an ongoing discussion titled, "JAK2 mutation effects and questions." Typically, the Janus kinase 2 (JAK2) gene is a possible indicator for future blood cancers or diseases, but not always. As with any sort of medication, or supplement, it is always best practice to discuss with your provider or a pharmacist. @livelife, did your provider discuss next steps with you as far as management and whether or not it is something you are going to continue to monitor?

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Im given aspirin and posibly jak2 might b repeated , do these MPNs progress with time like is it a norm for them to progress or can it stay in the same ratios ? Is ET blood cancer ? Im young 31 so can it go into remission on its own or naturaly if i keep good diet ? Also does black seed cause any affect to cell proliferation ive read on certain pages that its effective natural med ? Any views…. i might have jak2 neg ET because all readings r normal just platelets are high and im asymptomatic . Is jak2 pos ET more dangerous than jak2 negative???

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