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.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 18, 2023
In reply to @ger63 "I do get peeling on the inner aspect of my lower lip and small pinpoint areas..." + (show)
@ger63

I do get peeling on the inner aspect of my lower lip and small pinpoint areas on my tongue. This happens intermittently. The dentist isn’t sure the cause . My chemo doctor thinks it maybe an allergic reaction. My platelets are in normal range. For that I am happy.

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Hi @ger63. With the peeling of your lower lip and pinpoint areas on your tongue, do you by any chance use a whitening toothpaste? This may cause similar reactions if you have a sensitivity to some of the ingredients, causing sloughing of the tissue and irritation to the tongue. Try using a children’s non-mint toothpaste for a couple of weeks to see if it makes a difference.

Another option is to make a paste out baking soda and water. It’s not very tasty but it does a good job cleaning your teeth and it’s not irritating.

Finishing up after each meal with a saltwater rinse may help sooth your tongue and mucous. Dissolve 1/4 tsp salt in a cup of lukewarm water. Rinse for 30 seconds and spit. Repeat a couple of times.

Do any certain foods seem to bring this on, such as tomatoes or anything salty/spicy or acidic?

REPLY
1 reply
ger63 | @ger63 | Nov 18, 2023
In reply to @loribmt "Hi @ger63. With the peeling of your lower lip and pinpoint areas on your tongue, do..." + (show)
@loribmt

Hi @ger63. With the peeling of your lower lip and pinpoint areas on your tongue, do you by any chance use a whitening toothpaste? This may cause similar reactions if you have a sensitivity to some of the ingredients, causing sloughing of the tissue and irritation to the tongue. Try using a children’s non-mint toothpaste for a couple of weeks to see if it makes a difference.

Another option is to make a paste out baking soda and water. It’s not very tasty but it does a good job cleaning your teeth and it’s not irritating.

Finishing up after each meal with a saltwater rinse may help sooth your tongue and mucous. Dissolve 1/4 tsp salt in a cup of lukewarm water. Rinse for 30 seconds and spit. Repeat a couple of times.

Do any certain foods seem to bring this on, such as tomatoes or anything salty/spicy or acidic?

Jump to this post

You are absolutely correct. The dentist said it may be from an ingredient in toothpaste called SLS. I you proenamal sensodyne. ( not sure if I can state products in this forum) also tomatoes or walnuts, which I love. Thank you for the other suggestions, it really helps. I know some of these things , but need to reminded. Thank you again.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2023
In reply to @marnix "I have been on low dose Hydroxy for 2 months now - do notice small mouth..." + (show)
@marnix

I have been on low dose Hydroxy for 2 months now - do notice small mouth sores. Otherwise, just fatigue that is mostly manageable. I have JAK2 mutation with Polycythemia Vera... also have had Chronic Lymphocytic Leukaemia for about 15 years ( with little treatment) and was put on Xarelto and ASA low dose for peripheral artery disease. I am 80 years old, and try to keep active with yoga and core classes as well as a good walk once a day. One Phlobotomy, and platelet count has gone down to 400 range from over 600.

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Hi @marnix, those mouth sores can be real annoyances to down right miserable. Are you able to manage them alright?

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1 reply
marnix | @marnix | Nov 20, 2023
In reply to @colleenyoung "Hi @marnix, those mouth sores can be real annoyances to down right miserable. Are you able..." + (show)
@colleenyoung

Hi @marnix, those mouth sores can be real annoyances to down right miserable. Are you able to manage them alright?

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Thanks for asking, Colleen. I am managing them okay... they are not really bad, usually last about a day or two.

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1 reply
nypara66 | @nypara66 | Nov 21, 2023
In reply to @marnix "Thanks for asking, Colleen. I am managing them okay... they are not really bad, usually last..." + (show)
@marnix

Thanks for asking, Colleen. I am managing them okay... they are not really bad, usually last about a day or two.

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Hello, I was having sensitive gums and bad irritation when begining the hydroxyurea. I started off 7 days a week, then 5X and now 3 days a week for about four months and it’s keeping the platelets down around 400. My mouth is so much better. It took about 4-5 months for my body to adjust. I was recently diagnosed with PV in January.

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dherrman2 | @dherrman2 | Nov 22, 2023
In reply to @chadknudson "You may find that despite having the JAK2 mutation, your life may not be any noticeably..." + (show)
@chadknudson

You may find that despite having the JAK2 mutation, your life may not be any noticeably different. I'm now on three years with a diagnosis of polycythemia vera and other than monthly blood lab work and regular phlebotomies, my life has remained relatively unchanged. I'm still very active -- I am still able to work as a soccer referee. You can go for decades managing the condition without having any significant changes in your health and the way you feel. Support your overall general health by eating well, getting exercise, and simply taking care of yourself.

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I have to agree. I have been diagnosed with PV for 14 years. I have taken Hydrea since the beginning, 1000 mg per day. I get phlebotomies as needed, and see my hematologist every 6 months. I do have very low iron, it was 4 at last check. I am a medical assistant and work full time. I do not know much about this disease, but I am able to do things as normal so far.

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vmg44 | @vmg44 | Nov 22, 2023

For those of you who have just received a diagnosis or are still processing what PV means in your life this may lift your spirit.

I consider this story and informative video about PV and managing the disorder rather comforting. Coming to acceptance and understanding that live can become more meaningful through knowledge.

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dherrman2 | @dherrman2 | Nov 24, 2023

I have never seen this. Thank you!

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lameyn1957 | @lameyn1957 | Dec 10, 2023

Hi,
I was diagnosed with Jak2 exon 14 + Thrombocytsis + Reticulin Fibrosis. I find it hard to get a lot of info on any of them.
I know Jak2 is a mutation of exon 14. And causes Thrombocytsis.
Reticulin fibrosis causes my marrow to scar but none of my doctors have looked into what caused all this.
If you have any information on these I would love to have it
Laura

REPLY
1 reply
Rhonda Gregory | @rjgregory440 | Dec 11, 2023
In reply to @lameyn1957 "Hi, I was diagnosed with Jak2 exon 14 + Thrombocytsis + Reticulin Fibrosis. I find it..." + (show)
@lameyn1957

Hi,
I was diagnosed with Jak2 exon 14 + Thrombocytsis + Reticulin Fibrosis. I find it hard to get a lot of info on any of them.
I know Jak2 is a mutation of exon 14. And causes Thrombocytsis.
Reticulin fibrosis causes my marrow to scar but none of my doctors have looked into what caused all this.
If you have any information on these I would love to have it
Laura

Jump to this post

https://www.mpnresearchfoundation.org/understanding-mpns/
The MPN Reasearch Foundation is a good information resource tostart with. Also try Googling Myeloproliferative Neoplasm (of which Essential Thrombocytosis is one - here on this site most of us call it ET JAK2 Positive )

You can also start back on the original post in this string (there are a LOT of posts to read) and you may find more links to other sites.

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