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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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ags | @ags | Jun 13 9:24am
In reply to @jerrlin "I have PCV with Jack 2. I struggle with itching and slight headaches and ear aches...." + (show)
@jerrlin

I have PCV with Jack 2. I struggle with itching and slight headaches and ear aches. I started out with phlebotomies, then went to Hydroxyurea. That worked for a while until my platelets dropped. Now I’m on just baby aspirin. What I find with this disease is that it never stays the same, you need to be willing to do adjustments bloodwork calls for it. It’s like a roller coaster, but being active and have a good good mindset Really is the best medicine . Make sure you do research. Keep yourself informed and ask your oncologist. A lot of questions.

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Yes, I’m a ‘question machine’ and have bloodwork every three months. Thanks for your reply.

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marnix | @marnix | Jun 13 2:10pm
In reply to @ags "i was taking a baby aspirin before the discovery of the jak2 mutation. my platelet count..." + (show)
@ags

i was taking a baby aspirin before the discovery of the jak2 mutation. my platelet count was normal for a long time. When the numbers started to elevate, finally a hematologist checked for this mutation, and sure enough i was positive for the Jak2. I only recently started on hydroxyuria (500mg). The platelet count has remained under 400 with this med. I had stopped taking the baby aspirin when I started the hydroxyuria, but now a new doc is recommending I add it. I'm trying to research whether this addition is necessary. Otherwise, the syndrome is in check. No side effects to report.

Jump to this post

I also had PCV dx and was already taking a blood anti coagulant(xarelto) and baby aspirin due to Peripheral Artery Disease. With the JAK2 discovery, hydroxyurea was added. Recently PAD Dr dropped the xarelto, and I stay on baby aspirin and Hydroxy (500g.day), though platelet count is in normal range.

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jackiecarey | @jackiecarey | Jun 13 3:57pm

It's my understanding that PV IS a blood cancer, it's a progressive disease with no cure..There are medications to help with the symptoms and slow the disease and clients who have it can live many years under the care of a hematologist...I also understand and experienced that general practitioners are not aware these cancers exist and don't pick up on the diease..even after a TIA or clotting incident. I wish things were different but the reality is as I said. So your question on prevention, there isn't one since they don't know the cause that causes the Jak2 mutation switch to get stuck on the on position. For now, if your lucky enough to get it diagnosed is get under the care of a specialist and treat the symptoms., slow the disease and crave out the best life as I promise you even though we're living with the symptoms everyday it could be much, much worse....Accepting the realities is a first step....

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1 reply
nypara66 | @nypara66 | Jun 14 6:33am
In reply to @ags "Thank you for your reply. I had moved recently from one state to another, and only..." + (show)
@ags

Thank you for your reply. I had moved recently from one state to another, and only the new doc suggested both. Makes me wonder why the other doc didn’t mention or suggest this. But you have helped me decide to add the baby aspirin now. Thank you, again😊

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I am JAK 2 positive with PV and also take the hydroxyurea and one baby aspirin. My platelets fluctuate and they adjust the hydroxyurea accordingly. Stick to regular blood screenings and you will learn the drill. Good luck!

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1 reply
ags | @ags | Jun 14 6:42am
In reply to @nypara66 "I am JAK 2 positive with PV and also take the hydroxyurea and one baby aspirin...." + (show)
@nypara66

I am JAK 2 positive with PV and also take the hydroxyurea and one baby aspirin. My platelets fluctuate and they adjust the hydroxyurea accordingly. Stick to regular blood screenings and you will learn the drill. Good luck!

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Thank you, yes I get screened frequently.

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1995victoria | @1995victoria | Jun 14 8:37am

Any one else told ....not to take ibuprofen......not at same time as HU & baby aspirin.......but never heard this warning

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2 replies
Rhonda Gregory | @rjgregory440 | Jun 14 9:03am
In reply to @1995victoria "Any one else told ....not to take ibuprofen......not at same time as HU & baby aspirin.......but..." + (show)
@1995victoria

Any one else told ....not to take ibuprofen......not at same time as HU & baby aspirin.......but never heard this warning

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Yes, my doctor told me no ibuprofen. Acetomenophen (Tylenol) is okay, but only if really needed.

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1995victoria | @1995victoria | Jun 14 11:36am

i wonder why? do you know? did dr say?

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1 reply
bosmac | @bosmac | Jun 15 12:17am
In reply to @ags "i was taking a baby aspirin before the discovery of the jak2 mutation. my platelet count..." + (show)
@ags

i was taking a baby aspirin before the discovery of the jak2 mutation. my platelet count was normal for a long time. When the numbers started to elevate, finally a hematologist checked for this mutation, and sure enough i was positive for the Jak2. I only recently started on hydroxyuria (500mg). The platelet count has remained under 400 with this med. I had stopped taking the baby aspirin when I started the hydroxyuria, but now a new doc is recommending I add it. I'm trying to research whether this addition is necessary. Otherwise, the syndrome is in check. No side effects to report.

Jump to this post

I have been on HX 500mg for last 2 weeks now plus 100mg Aspirin. I have been on Aspirin since Nov. 23 when my platelets were 840. Early this month when Hematologist started me on HX, she insisted i continue taking the Aspirin as well as they both work differently, the aspirin is watching on the clothing part of the equation but HX is reducing the excess production of platelets. My 2 cents!

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2 replies
bharty615 | @bharty615 | Jun 15 7:18am

I have polycythemia vera also a jak 2. If this is your diagnosis there is no cure for it just take you med to control the red blood count. Get a second opnion
before worrying

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