Jak 2 mutations

Why did they test u for jak2? What is your diagnosis?

They found the marker in blood test. More testing this week. Bone marrow Testing

With me they found high platelets and had me see a hematologist who tested for jak2 which I have. My diagnosis is essential thrombosis. Had the bone marrow test was inconclusive. Try not to worry easily said. Many people have jak2 and they don’t know it. Did they say what they think u have. If it’s ET it’s not a death sentence they will just check ur blood every 3-4 months.
Wishing u well
Debbie

Me, too. A routine blood test found high platelets, which led to a referral to a hematologist. He tested variants and found JAK2. Yes, it’s scary till you look at statistics. Many people have lived with this for decades. My heme doc said it’s not necessarily a precursor to a cancer. It’s more like diabetes and usually controllable.
Do you have a treatment plan? I’m taking an 81mg baby aspirin daily. So far, so good.
Best wishes,
Sherry
Btw: Life goes on! I’m sailing the Rhine River on a Christmas Markets cruise as I write this!

Just aspirin now. I also take beet root, ginko, tumeric and other supplements. Just moved to the beach a year ago and a stroke in June. I think it could have been much worse if I had not been taking supplements and working out each day. I have a bone marrow test this week.

Wow sailing on Rhine sounds so nice. Marry Christmas. Enjoy

Thank you keeping my fingers crossed.

Welcome to Connect @kwmotley Reading through your comments it looks like you’re taking a daily aspirin tablet and had a stroke earlier this year. This most likely had your doctor running additional tests to make sure you don’t have a blood condition which can cause unintentional clotting.

The results of the JAK2 test you had done does show that you have a mutation for the JAK2 gene which can cause various bone marrow disorders.
These are known as myeloproliferative neoplasms (MPNs), where the bone marrow produces too many blood cells.

There are two links I’m posting below for good articles which help explain JAK2 gene and its involvement with blood disorders.

From verywellhealth.com:
https://www.verywellhealth.com/jak2-mutation-5217909
From healthline.com:
https://www.healthline.com/health/myelofibrosis/what-is-the-jak2-gene
You’ll be having a bone marrow biopsy next to check the over all health of your bone marrow, which is the manufacturing site for your blood and the heart of your immune system. The information from this test will be very helpful for your doctor to come up with a treatment plan to keep you healthy going forward.
Make sure your doctor knows about all the supplements you’re taking as they can have an impact on your blood, along with the aspirin you take daily.
Do you have any questions about the biopsy procedure?

I have posted before about having JAK2 mutation - I have been followed by Hemo-oncologist for years, and in the spring, blood numbers were different, so bone marrow biopsy and additional blood tests revealed mutation. Likely diagnosis is polycythemia vera. I have been on xarelto and daily aspirin due to leg artery issues, so now have added Hydroxyurea daily. I am 80 years young, and keep active and eat well… so far, apart from fatigue, doing well. Dr told me I will die with this disorder, not from it. Hope she is right!!

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?

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?