Anyone living with Essential Thrombocythemia with JAK2?

Hello,
I was just diagnosed with ET JAK2 2 weeks ago today. My platelets last labs were at 825. I started Hydroxyurea last Thursday ( 5 days ago) 500mg twice a day and so far no side effects. I am 63, work full time at a desk job and was quite shocked at this diagnosis. It was discovered thru routine blood panel after I hadn't had any labs done since 12/2023.

I was referred to hematologist and fully expected to just have some more tests ordered, probably no big deal. When he came in and said I had ET JAK2, something I never heard of, and that it was a type of chronic cancer and I'd need to take a chemo drug, I couldn't believe it. Especially since I was feeling mostly fine with just some dizziness and vision distortions the urgent care doc attributed to Vertigo. Wrapping my brain around it was overwhelming and difficult. What is this? How am I going to feel? How big or small a deal is this? What does it mean? What does my future look like? Can I still work? So many emotions and questions but under it all I knew I was lucky to have something manageable and not a terminal prognosis. I have friends and family I've watched battle for their very lives and endure chemo and radiation and shortened lives, so I feel very fortunate.

My best friend found this connection and am so glad to find a community where I can find answers to so many questions and read other's experiences with this same, I don't even know what to call it, a condition? a disease? the C word? A place to find and give support and share experiences and knowledge.

So far my occasional dizziness persists but I am at the beginning of this. Am really hoping the medication does it's thing and I can continue living and working without too much interference, that I am sure we are all hoping for.

I have 2 grown children and 5 grandchildren from age 1 to 18. I am divorced and live on my own so definitely need to keep working, retirement is not happening in the near future. I also have a wonderful group of loving supportive friends that are family (my framily).

So that's my story so far, looking forward to connecting here and seeking answers and wanting to know other's experiences.

@birgitr Will do.

@kat260 I am just back from my normal Onkologist appointment and actually he prescribed Pegasys. We are gonna start on Friday this week. He thinks the insurance will cover the costs 😅. I am gonna keep you up in the loop especially about the harsh sideeffects . Additionally I will stop HU.

just curious- why were you switched from HU to Pegasys?

@1995victoria My hope is that the drug will reduce the percentage of the vaf, so that it is less likely that the desease will progress into a more severe myelofibrose . HU can successfully reduce the platelets however could not influence the bone marrow itself.

@birgitr does pegasys kill off mutant generating cells?

How involved is your PCP in your condition/medication? I don’t mean diagnosing but do they acknowledge your condition? Notice changes in your blood labs? Recommend things like vaccines based on the fact that you have ET?
I was diagnosed in February.