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JAK2 Mutation - Effects and Questions
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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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.
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.
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.
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?
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.
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.
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.
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.
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.
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?