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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