1. < Blood Cancers & Disorders

Jak 2 mutations

Posted by kwmotley @kwmotley, Dec 1, 2023

Just told that I have a Jak 2 mutation. Anyone else been thru this ?

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jewelfaux | @jewelfaux | Dec 6, 2023
In reply to @loribmt "Hi @jewelfaux. The JAK2 mutation can be discovered/diagnosed with blood work. It isn’t necessary to have..." + (show)
@loribmt

Hi @jewelfaux. The JAK2 mutation can be discovered/diagnosed with blood work. It isn’t necessary to have a bone marrow biopsy for confirmation. But because the mutation is associated with bone marrow disorders, sometimes a doctor will order further testing if they have questions about a patient’s condition.

Reading through some of your replies with other members, you’re concerned about the higher rate of HU you’re taking. If you’re not ‘feeling comfy’ with your current hematologists, it’s always your right to have a second opinion.
Are you seeing positive results with the reduction of platelets with the level of HU you’re taking? How about side effects?

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The HU has brought my platelets down somewhat (high of 759-a year ago before HU to 544 now). I don't know if that's sufficient for the amount of HU and aspirin I take. I am fortunate in that my only side effect is fatigue.

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mdterp76 | @mdterp76 | Dec 6, 2023
In reply to @jewelfaux "Lori, I'm 75 take 325mg aspirin and 1500mg HU every other day and 1000mg on opposite..." + (show)
@jewelfaux

Lori, I'm 75 take 325mg aspirin and 1500mg HU every other day and 1000mg on opposite days. I was diagnosed with ET JAK2 a year ago. I've only had blood work done, never a bone marrow test. Should a bone marrow test have been done? Should I look for a different hematologist?

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Wow! You must have a strong stomach to be able to take 325mg of aspirin. I can only take one baby aspirin. I was also diagnosed with Jak2 through a blood test. I take 500 mg of HU, 2x week, daily iron and daily baby aspirin. Most of my blood numbers are back to normal, save for platelets at 560. They had been over 700. I'm 69 and was diagnosed in Jan. 2023 as ET with Jak2.
Karla

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jewelfaux | @jewelfaux | Dec 6, 2023

I take a tagamet every day to prevent ulcers.

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