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.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
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?
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.
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 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.
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
After reading that so many JAK2 people experience being weak or tired, and have balance issues, now I wonder if I can attribute my similar symptoms to the disorder. I tell people that my balance issue can be described as having been on a cheap drunk without having the pleasure. And I now tire easily. So now I’ll discuss this with my hematologist next week.
My JAK2 Mutation was discovered 11 years ago, quite by accident. I never had any symptoms. (My hematologist told me that for many, the only symptom is death, by a blood split in the brain, heart, or lung!). My original platelet count was close to a million! I’ve been taking Hydrea daily ever since, with no side effects from the drug. However, over the last couple years, my count has fluctuated between 450 to 800. My dosage is adjusted and rechecked again in 4-6 weeks. It’s possible the Hydrea might be losing its effectiveness. I worry that another drug cost or copay might be astronomical! If only a cure could be found. I’m 76 now, and other than arthritis, am in very good health.
Hi Barbie......I have jak2.....myeloproliferative neoplasm, I believe it is similar to pv. Chronic fatigue most of the time, poor balance and occasional nausea. When I feel weak I try to rest often and for at least two hours at a time. I usually go to bed by 6 o'clock just to relax and watch tv
I am tired some in the morning but otherwise once I get going I’m ok. I wonder if it is your BP meds making you tired? How’s your diet? Do you take any supplements?
Is anyone in this group from Maine???