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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@remo1110

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.

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Replies to "It is hard to understand I was told I have Essential Thrombocytosis with a JAK 2..."

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
~~~
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?

My brother and I have the JAK 2 mutation. I take 500 mg of Hydrea but my brother had more servere side effects from Hydrea so his medication was switched. My blood platelet count is in the high normal range but my brother's is still a bit too high.
My hematologist at University of Chicago Cancer and Blood Institue in Hinsdale, IL, kept repeating to me, "This is not cancer" over and over and over. Guess she knew how concerned I happened to be. I will take her word regarding essential thrombocythosis due to her vast experience. Yes, I was told I could have a heart attack or a stroke also so the Hydrea I will take for life, I suppose. I am thankful for that medication.