Anyone living with Essential Thrombocythemia with JAK2?

@kat260 With responders i tried to convey that only for 50 to 60 percent of the patients interferon works regarding positive effects according this studies. Other than that, Besremi isn’t approved for patients with ET yet.

@birgitr Ah, ok. Besremi isn't available here in Australia but Pegasys is. I see my haemo end of April and will discuss trying interferon first over HU though I've also heard we've had some supply issues here. Thanks for the update and good luck in convincing your oncologist.

@kat260 I heard about those issues with Pegasys, however the Professor emphasized that they are available again. Please keep me in loop about the outcome of your appointment.

People with ET who are on hydroxyurea -

I have ET JAK 2, dx in March 2025. Platelets were 900K and are now 530-620. is OK with that. 2 baby aspirin daily and 500mg/day of hydroxyurea

OK, 3 months after starting hydroxyurea, I started itching like crazy; back, chest, arms mostly. It got bad. Tried all anti-histamines and OTC topicals. Caladryl helped me most, but after a month of putting on all those places, I got toxic symptoms: Drowsy daytime, insomnia, etc. Saw dermatologist, who put me on Rx triamcinolone cream 2% to use 2x a day on affected areas. Well, I got the same toxic effect people often get with steroids, and this was like Kenalog. Sleepy daytime, insomnia, etc. VERY depressed about this. My upper chest has a raised, excema-like rash/dermatitis, small, tiny, itchy bumps on arms, back & upper back itch - I scratch - I itch more. My oncologist is hesitant to cut back on my hydroxyurea, and the other options for NPN's - Jakafi, Interferon, etc. are really for PV patients and would not help with ET very much.

So I am in "itch-scratch-itch cycle! But the itching is so intense sometimes I HAVE to scratch it or tie my hands behind my back. I *know* about 50% of ET patients have itching, and about the same percentage who take Hydroxyurea also get it. Caladryl and other OTC things like Sarna anti-itch have Proxamine in them, and if I apply to large areas of skin, I get the same toxic effects.

Has *ANYONE* with ET, or frankly any other blood cancer, or having chemo treatments, found a doctor who solved their itching without issues, as I have had/do have from the OTC or Rx prescribed things mentioned???

If you have had this issue, I would sure like to know how you deal with it or moderate it so you can sleep at night and be alert during the daytime. I also have mild night sweats, but they don't cause me insomnia or rashy, tiny red bumps/and intense itching. They are just irritating.

Photos attached. Dried clear Caladryl (like Calamine lotion) gel shows, but I do not take it now, unfortunately, because it helped 2-3x a day.

Many thanks in advance.

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.

I was diagnosed last October at 70 years old. I started with one HU capsule a day and after 11 days the doctor suggested we add 2 more per week. I was willing but my husband expressed his feeling that there hadn't been enough time for a good evaluation of the medication. I am grateful that he did that because my numbers continued to go down and now I take 4 capsules per week and my last blood test showed a 364 level.
If I have any side effects I haven't noticed them enough to really pinpoint the medication as the cause. Yes, I am tired at night but my life is hectic with a physically challenged husband, continued recovery from a broken hip and ankle in March of 2025 and two adult sons living at home.
Don't fear the diagnosis, just stay in touch with your body.

@claire1776

Good question. While HU has brought down my platelet count to around 400 -- that's still the top of the "normal" range. So I have lots more platelets than someone without ET.

I also have oversized and oddly shaped platelets. This also happens when the proteins (JAK, CAL or MPL) that govern blood production mutate.

ET-distorted platelets are less able to slip through blood vessels.

This makes us more susceptible to heat and cold; contributes to the brutal headaches of ET; causes tingling and burning sensations in the extremities; and may even trigger our immune response.

@sarahgault

I'll tell you what I wish I'd heard when I was first diagnosed: It WILL get better.

You are not alone. We're walking this crazy obstacle course together.