1. < Blood Cancers & Disorders

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

casevin7 | @casevin7 | Dec 18, 2023

Yes unfortunately that is true. For years after my mom passed from Myelofibrosis I donate to help replace the over 100 units of blood she had used the last 3 weeks of her life. But once I got my diagnosis of PV, I was told that they could not take my blood anymore. So disappointing. Today I am due for my routine blood draw and I have to watch them through it away.

REPLY
dherrman2 | @dherrman2 | Dec 18, 2023
In reply to @jerrlin "I have the same situation and my oncologist put me on hydroxyurea 500 mg a day...." + (show)
@jerrlin

I have the same situation and my oncologist put me on hydroxyurea 500 mg a day. Within 2 weeks, my platelets dropped from 337 to 57. He has taken me off hydroxyurea and new blood tests in 2 weeks. I asked him your question and he told me that I am at high risk of blood clots because I have the Jak 2 and the drug helps protect me from that. Does anyone have any other information?

Jump to this post

I was dx 14 years ago. I have been taking 1000 mg of Hydrea everyday. My Feritin is 4 and my red cells and platelets are very high.
I have phlebotomies whenever I start to feel bad, other than that, I have been ok. I am always tired.
Not sure why my feritin is so low, but my dr. Has said that is normal.

REPLY
carolannt | @carolannt | Dec 18, 2023
In reply to @janemc "An oncology nurse told me that blood withdrawn from people with blood disorders/cancers is discarded. And..." + (show)
@janemc

An oncology nurse told me that blood withdrawn from people with blood disorders/cancers is discarded.

And the Red Cross, to which I had regularly donated for years, told me my ET diagnosis means I can no longer do so.

Jump to this post

I was wondering about that. I donated also. Guess it's all over with PMF

REPLY
ags | @ags | Jun 12 10:02pm

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.

REPLY
4 replies
debhammel | @debhammel | Jun 13 7:00am
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 ET with the JAK2 mutation and my hematologist-oncologist has me on both HU and low-dose aspirin. As he describes it, the HU lowers the platelet count but the platelets that remain are still abnormal and "sticky." The aspirin works with HU to further reduce clotting risks, so it makes sense to take both.

REPLY
1 reply
eileen11108 | @eileen11108 | Jun 13 7:05am

I understand a coated low dose aspirin is taken to prevent blood clots. I am on a blood thinner so I do not need to take it.
Best wishes, Eileen

REPLY
sregiani | @sregiani | Jun 13 8:01am
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

Is your new doc an MPN heme specialist? The condition we have is outside the realm of “regular docs”.

REPLY
1 reply
jerrlin | @jerrlin | Jun 13 8:32am

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.

REPLY
1 reply
ags | @ags | Jun 13 9:13am
In reply to @debhammel "I have ET with the JAK2 mutation and my hematologist-oncologist has me on both HU and..." + (show)
@debhammel

I have ET with the JAK2 mutation and my hematologist-oncologist has me on both HU and low-dose aspirin. As he describes it, the HU lowers the platelet count but the platelets that remain are still abnormal and "sticky." The aspirin works with HU to further reduce clotting risks, so it makes sense to take both.

Jump to this post

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😊

REPLY
1 reply
ags | @ags | Jun 13 9:21am
In reply to @sregiani "Is your new doc an MPN heme specialist? The condition we have is outside the realm..." + (show)
@sregiani

Is your new doc an MPN heme specialist? The condition we have is outside the realm of “regular docs”.

Jump to this post

Not sure, he’s with a good group, but will need to check that out. Thank you.

REPLY
View MoreView Less
Please sign in or register to post a reply.