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.

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I find your post informative because I was diagnosed with MGUS in 2019. It’s a blood disorder that at present looks like it’s progressing into Non Hodgkin’s Lymphoma or worse Waldenstrom Macroglobulemia. A number of the issues with. JAK 2 are present in my bloodwork too. My B cells are mutated causing a drop in my red blood cells and platelets too. I’ve been anemic for over 3 years, longer than when they found I had MGUS. In researching JAK 2, I realized that the 5 blood clots between November 2021 and March 2022 may be triggered by undetected JAK 2. The first clot was the worst, it ended up in my right lung as a very serious Pulmonary Embolism. Number 3 blood clot tried to block my stent in the left atrial chamber and almost killed me. I have bloodwork scheduled for November, think I ask my Oncologist to add a JAK 2 test as well besides my cancer screening. Thanks for giving information I can and will use. Becky1024

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@becky1024

I find your post informative because I was diagnosed with MGUS in 2019. It’s a blood disorder that at present looks like it’s progressing into Non Hodgkin’s Lymphoma or worse Waldenstrom Macroglobulemia. A number of the issues with. JAK 2 are present in my bloodwork too. My B cells are mutated causing a drop in my red blood cells and platelets too. I’ve been anemic for over 3 years, longer than when they found I had MGUS. In researching JAK 2, I realized that the 5 blood clots between November 2021 and March 2022 may be triggered by undetected JAK 2. The first clot was the worst, it ended up in my right lung as a very serious Pulmonary Embolism. Number 3 blood clot tried to block my stent in the left atrial chamber and almost killed me. I have bloodwork scheduled for November, think I ask my Oncologist to add a JAK 2 test as well besides my cancer screening. Thanks for giving information I can and will use. Becky1024

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Knowledge is everything

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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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I have Jak2 diagnosed in 2019. Was stationed at New River for three years. VA doctor and private doctot say probably caused by Lejuene water. VA denied claim, Also have kidney disease, also denied!

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@lag630

Thank you. We will try.

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Good morning! By my reckoning it’s Day 25 post transplant for your husband. I just happened to run across my journal entry for my Day 25 this morning while rummaging through documents on my computer. Amazing how life has changed since then. It’s always interesting to read what I wrote along that journey, to watch the progress!

I hope your husband is gaining strenth now and feeling much better than a couple of weeks ago. I’m expecting his appetite has improved a little and he’s getting more food down. Has he been walking around the neighborhoods of Rochester?
Caregiving for a SCT patient is a challenge. Especially getting us to eat! LOL. How are you holding up? ☺️

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with pv NO when they take your blood it cannot be donated. I asked the oncologist about stem cell andwas told it might kill me and pv is associatedwith jak2.

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@loribmt

Good morning! By my reckoning it’s Day 25 post transplant for your husband. I just happened to run across my journal entry for my Day 25 this morning while rummaging through documents on my computer. Amazing how life has changed since then. It’s always interesting to read what I wrote along that journey, to watch the progress!

I hope your husband is gaining strenth now and feeling much better than a couple of weeks ago. I’m expecting his appetite has improved a little and he’s getting more food down. Has he been walking around the neighborhoods of Rochester?
Caregiving for a SCT patient is a challenge. Especially getting us to eat! LOL. How are you holding up? ☺️

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Hi Lori,
Doing ok. I’m just taking things a day at a time. He is doing a little better every day. Eating hasn’t been a problem for him but getting enough fluids in continues to be a challenge. We are working on that. He has had extreme fatigue but is slowly coming out of it. He’s now more willing to take short walks, which is great. No GVHD either. We celebrate every milestone😊.

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