Anyone living with Essential Thrombocythemia with JAK2?

Interesting bit of news for ET patients: Yesterday, 8/31/26, The FDA approved Besremi for the treatment of Essential Thrombocythemia (ET). It improves not only the platelets levels (in some patients by 56%), it also decreased the JAK2 mutation burden, actually modifying the disease.

Several article links:
Onco Daily https://oncodaily.com/hematology/besremi-essential-thrombocythemia578363

Health Tree:
https://healthtree.org/mastocytosis/news/08-31-2026-fda-besremi-approval-for-et
This is the first new drug approval for ET in 30 years. For some patients this may have the potential for durable remission. HU can help keep the platelet levels lower but it doesn’t impact the JAK2 mutation. This may be something to talk over with your hematologists. Feed back from ET members?

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.

Wondering does ET cause you any pain and are you permitted to take NSAIDS? for the pain

Hi from Australia. I'm new to the group. I'm very happy to have found this group given the rarity of the condition. It's been interesting to read everyone's stories and information about ET & Jak2. My platelets have been slowly rising since 2021 after my covid shot. Whether that's relevant or not, who knows but it doesn't change the situation. I'm a 60 year old female.
My platelet count was 870 a month ago. My haematologist has said he will start me on HU when I reach 1000. I've been taking Asprin 100mg daily for 3 months now. I also have family history of heart disease so unfortunately was already at risk of blood clots and stroke. Better to at least I know about it, I guess. I think initially my platelets went up and down but the trend over the last 18 months has been steadily on the rise. I don't see him again until end of February so I'm resigned to the fact that I'll be given HU at that time.
Some of the side effects sound scary but I guess everyone is different and I don't know what dose I will be prescribed so I'm trying not to think about it too much and I'll have to wait and see. I have had gut issues my whole life and do and take various things to control it to an extent, so I'm hoping my gut issues won't get any worse once I start HU.
It's comforting to know I'm not the only one dealing with this diagnosis and there is a group I can go to for information and any questions I might have once I start HU. Strangely, I only just found out ET was classed as a blood cancer. My GP and Haematologist didn't mention it so it was a bit of a shock to read it. I think my haematologist is in denial and he said he doesn't necessarily think I'll reach 1000! Given the trend, I think that's very optimistic and given my platelets are pretty high, it will still need addressing.
Anyway, thanks for listening.

@dewz13
Thanks! Let's stay in touch. It can only help to learn from each other.
Sandy

Hi.
Yes I noticed a total difference, my platelets are always in the 300's now or 407 all within normal range.
I never miss the qtr glass of Welches grape juice or green tea every morning, then maybe 1-2 times a week the cranberry juice in carb water. It's also nice to know you can do dark chocolate that also protects the hearts arteries. I see my Dr in a couple weeks which is every 3 most also and I pray each visit as I'm sitting there that my results are going to be good and so far they are now. Give it a try it can't hurt you just make sure the juices are 100 percent juice. The Welch's I also get no sugar added. Good luck! Janet

@esperanzam
Hi Sandy, my doctor said the shot was fine but if I needed surgery I should come off meds. He also said 2 weeks of prescription anti-inflammatories is ok. Who knows?? We get such conflicting guidance it is so difficult to know what to do.

I take 500 X 3 a week after taking 500 X 7 feel better than before but plates are slowly climbing up. Dr said we will watch and when they get over 440 we will add back 1 pill at a time until I level out so far they are up to just under 300. Will get blood work next week.

@leene808 I think one of the questions researchers are trying to answer is at what point can the mutation be detected before platelets start rising. The theory is that the mutation may occur many years or even decades before ET becomes evident.

Anecdotal info only, but I've met a number of women like me with a history of miscarriage who then started running high platelets in their 50s or 60s. Women with ET do seem to miscarry at higher rates, but maybe only correlation, not cause.

Glad to hear you are holding your own without TIAs and headaches! It's been 18 years for me, 8 on HU. So far so good, but I am 72, so didn't ET wasn't "active" when I was young, except maybe the miscarriage mysteries.