Anyone living with Essential Thrombocythemia with JAK2?

@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.

Curious if your doctors are tracking your JAK2 Variant Allele Frequency (VAF) on a regular basis? I was diagnosed in January 2026 with ET, and my VAF is still low (18)- which sounds good. However my VAF jumped from 12 to 18 in 6 weeks. The first was from a blood test, the later was from a bone marrow biopsy. My Dr said VAF is not something to be concerned with or that he will track. He instead will watch WBC, RBC, Hgb and platelets for signs of progression or trouble.

@jfranz60 Last I heard, VAF (aka "allele burden") varied among patients, and researchers weren't really sure what the variations meant. Honestly, I don't know what mine was when I had the bone marrow biopsy and mutation tests 10 or 12 years ago. Has anyone here visited with an MPN specialist recently about this? Blood counts trending up or down still seem to be what clinicians continue to use as indicators of progression.

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.

@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.

@athl
This is very encouraging. May I ask what you dosage is??

@jodyjazz Good morning Jody. I take 500 mg. of Hydroxyuria (Hydrea) 5 days a week. I do not take it on Tuesday and Saturday. I chose those days in case I ever wanted a glass of wine, I could enjoy it on a Saturday, ha, ha! Everyone’s dosage is different depending upon their bloodwork results. I think that when I first started taking Hydrea, my doctor was checking my blood weekly to see how my platelets were responding, then every two weeks, then monthly. Once my dosage was established, my bloodwork was checked every 6 months. I see my Oncologist twice each year. My platelets stay in the low 400,000. I’ve been very grateful that I’ve responded so well to the medication and have had no side effects other than being a bit tired. Although I am 69 years old now so maybe that’s part of it too, ha, ha! Gail 😀

@sarahgault

@princess86
I was diagnosed in Dec 2024 and my hematologist doesn't call my ET with Jak2 cancer. Initially, he gave me option of "a cancer pill or baby aspirin". Didn't sound too serious to me. So. I chose the baby aspirin. He provided no strong explanation of risks. At the time I was seeing a vascular surgeon for blue toes and burning pain in left foot. No further treatment from him was done. He did not do tests for PAD as he said I did not have it. A year later after several doc visits with hematologist and vascular surgeon still complaining of blue toes and terrible pain in toes at night, at rest waking me up, no other treatment provided gangrene set in and all toes on left foot had to be amputated due to blood clots. At hospital it was determined I had pad (peripheral artery disease) and an occlusion was found in left leg. I had run out of baby aspirin two weeks before so they determined the amputations were unfortunately my fault. I find my case unusual. Anyone else with this kind of scenario?

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.