JAK2 Mutation - Effects and Questions

You have elevate number of thrombocytes, also known as platelets, due to a cancer gene mutation (JAK2). Platelets are one of the many components made in your bone marrow and released to your blood stream as needed. JAK2 interferes with the proper production of these blood components such as white cell, red cells, platelets. The roll of mature platelets is to stick to injured tissue to stop the bleeding. You do have other blood clotting factors, but platelets tend to plug the hole.
Aspirin has been known for years to make platelets less sticky. So it is your best defense against blood clots. You may find that cuts or nose bleeds take longer to stop when on aspirin.
I too have a JAK2 mutation with elevated platelets and white count. A bone marrow study revealed that I have Primary Myelofibrosis. My marrow is filling in with scar tissue. There is no simple fix, but I continue to take aspirin to avoid blood clots or stroke because of the elevated platelets.
In case you are wondering, I’m a retired clinical scientist. I worked in hematology and in cancer genetics for over 40 years. Talk about irony.

Hi @remo1110 Blood conditions and blood cancers can be confusing. You’ve been diagnosed with Essential Thrombocytosis which is a condition in which your body produces too many platelets. Platetes are crucial in helping your blood to clot if you’re injured. However, if you have too many it can cause clotting to form where you don’t want it to happen such as deep within leg veins, lungs, etc.
You have an acquired gene mutation which is allowing the normal production of cells to not shut off in a timely fashion so the platelets are in an over production mode.
The medication your doctor has you taking will help get that back under control and the aspirin will keep your blood thinner so that you don’t clot as easily.

I’ve found some good reading literature for you that will really help explain what’s happening.
These two articles are a good overview of thrombocytosis:

https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315
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https://www.verywellhealth.com/thrombocytosis-overview-and-more-5187124

This article goes into more detail about the JAK2 mutation which is part of your diagnosis.
https://www.verywellhealth.com/jak2-mutation-5217909

I hope this is helpful. Are you having any side effects from the Hydroxurea?

It is hard to understand I was told I have Essential Thrombocytosis with a JAK 2 mutation. I take 500MG of
hydrea every other day. I still don't understand exactly what I have. I was told that without the hydrea and asprin I could have a stroke or heart attack. However I don't understand the cancer diagnosis.
I get very confused, but I just go along with what my doctor tells me to do.

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.

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

I have never seen this. Thank you!

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.

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.

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.

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