JAK2 Mutation - Effects and Questions

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?

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

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.

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?

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?

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.

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.

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.

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.

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.