JAK2 V617F positive, now what?

I also have JAK2. I was told that I could live a normal life. I have had BMB and aspiration (which was not painful at all). I take a low dose baby aspirin every day and 500 mg HU on MWF. I go for regular blood draws to make sure my platelets are within the normal range. I hope everything goes well for you.

I am jak2 positive. On a low dose of Asa and Hydroxurea x 3 years. I get my labs every three months. I have had a few side effects from the Hydroxurea, but not too bad. Some skin changes and slight hair thinning. My understanding is with monitoring of you labs and how you feel , you can live a normal life. Wishing you the best.

It seems like a very long time since your TIA and your current diagnosis. Are you on any medication at all to keep the stroke risk down until your December appointment? At the very least low dose aspirin? Most on this site with your diagnosis ( myself included )are taking aspirin and oral Hydrea. A few folks seem to not be tolerant to the hydrea and are taking a new and much more costly medication. Hydrea has been around since the 1960's and is a very effective treatment. The most helpful things I can tell you are to take your med at the same time evey day, with food; Hydrate! Water is essential; And avoid prolonged exposure to the sun (hats and long sleeves/pants). I know of people who have lived many years with this specific condition. If we take our meds and monitor our health appropiately, the odds are great that it will be something else entirely that ends our lives.

Thank you. No medication has been requested or discussed yet. I've only seen my primary so far. I lost a lot of weight last year which prompted the bloodwork. I'm anxious to see Hematology to find out more. I appreciate all the advice.

Have recently been diagnosed with JAK2 V617F. I would like to know about it.

Welcome to Connect @jv4430. There are a number bone marrow disorders related to the JAK2 gene mutation called Myeloproliferative neoplasms. These are a type of blood cancer that occur when blood stem cells produce too many of one or more types of blood cells, including red or white blood cells, and platelets
Until I know which particular condition you have, I’m posting a link to a good over all article that explains myeloproliferative neoplasms MPNs, the JAK2 V617F mutations and changes that can take place in the bone marrow with blood cell development.

From Verywellhealth.com:
https://www.verywellhealth.com/jak2-mutation-5217909
We have several members in the forum who also have this acquired mutation and have developed Polycythemia Vera (PV), Essential Thrombocythemia (ET) or Primary myelofibrosis. It is possible to have one or more of these conditions concurrently.

There are also quite a few discussions where other members discuss their experiences with your similar acquired mutations. One in particular that might be helpful for you is this one:
JAK2 V617F positive, now what?
https://connect.mayoclinic.org/discussion/jak2-v617f-positive-now-what/
With members @bettygsa @preacherswife1977 @ger63 @

But don’t stop there. Simply type in JAK2 V617F in the upper search bar and several pages will pop up for you to pick and choose.

I’d really like to put you in touch with other members with your same diagnosis. If you don’t mind sharing, what is the name of your condition? PV, ET, PMF?

I had a spinal tap on Monay , November 27th, 2023. I was really upset and scared. My Dr said there was nothing to it. She said my spinal tap was the easiest one she had ever done. My results are on December 18th. Merry Christmas to me. My dr is not very informative. She treats me as "matter of factly." I'm somewhat depressed. I am also a controlled diabetic 5.6 A1c. Have been a diabetic for 30 yrs. Don't know how this diagnosis is going to affect me. Am 5'8" and 134 lbs. Just scared.

@jv4430, waiting is so hard. Have you considered getting a second opinion or switching doctors?

How does life's stress/situations affect our JAK2 and ET?