Newly Diagnosed Essential Thrombocytosis

Most ET patients live a normal life span. My dad had it and lived to be 82. Died of COPD unrelated to ET. I was diagnosed at 60. Am 71, on aspirin and hydroxyurea x 8 years. No clots or strokes, which are the primary risks to quality for ET patients. If you follow medical advice, get appropriate exercise and eat a heart-healthy diet, you will be around for yr grandchildren a long time.

There is good basic info on the Mayo site using the search bar. You can also get good info from the MPN Research Foundation.
https://mpnresearchfoundation.org/essential-thrombocythemia-et/

I am about a month into my diagnosis so completely get where you are coming from. This group has been helpful already to help with expectations and experiences. My first meeting with my Dr is next week and I have a ton of questions.
My grandkids are my motivation to stay healthy too!

@swalex Just browsing your Web site: There is research underway to see if anti-inflammatory diet might help with ET symptoms:
https://mpnresearchfoundation.org/news/just-published-nutrient-trial-mediterranean-diet-intervention-in-mpns/
I personally have found that cutting back on starches, refined sugar, and increasing water to 64 oz per day in addition to other fluids helps with fatigue and headaches. I am on a heart healthy diet to reduce overall clot risk, but in 17 years, it has never had an effect on my platelet levels. They gradually went up and up to 800s, and then I went on the hydroxyurea.

However, dietary changes alone, even if they correlate with platelet stability, have not been proven to cause that stability.

Turmeric/curcumin supplements should be taken with caution, as they may be contraindicated with aspirin therapy. Dark chocolate can also be a double whammy if it triggers migraines, a symptom that plagues many ET patients.

Hydroxyurea works for many people without side effects. Additional conventional treatments that your site does not mention include anagrelide, interferon injections (Besremi and Pegasys), or ruxolitinib (Jakafi), a Janus-Kinase inhibitor.

As this support group often shows, there is considerable variation among patients, their symptoms, and what works for them. So much depends on age, mutation type, and co-morbidities.

Hope this is helpful to folks!

@dewz13
I’m still trying to wrap my head around it all. I’ve probably had it for years and had no clue. I just hate the feeling now that it’s going to loom over me for the rest of my life. My emotions are all over the place. The “C” word is terrifying at times. One minute I’m “I’ve got this” and the next minute “Im going to die”. I think a lot of my emotions come from having blood cancers on BOTH of my parents siblings side. Maybe I’m just adjusting and these feelings are all normal. I’ve read so many side effects of the chemo meds. I’m praying I don’t have to take them😞. I’m probably overreacting. Like I said…. My platelets have been high as far back as 2017 (that I can see on my portal” and I’ve known I had a low percentage Jak2 mutation for almost 6 years now. Went to an oncologist back then and his words were “why are you here?” 😞😞

@sdcgcarroll
I hope your feelings are normal because that is EXACTLY how I have been…terrified then “it’s ok”
You will probably be put on Hydrea as that is what I have seen here and that is what I am on. Seems like most people get blood work every 2 weeks to monitor (I was surprised by this). I have my first follow up appointment next week and have lots of questions but my platelets have already come down some so I am feeling encouraged. Not sure if it is from the iron pills (very low Ferritin) or the Hydrea.
I’m sorry your previous oncologist was so unhelpful. But I think you are on a path to manage your “disorder” now.

@dewz13
Thank you. I hear you. My ferritin was down to 5 before anyone woke up and noticed there might be an issue. Sorry to sound snarky about it but honestly… I kinda am. I’m super grateful for the amazing lady that has helped me and been spot on all along❤️. I’m hoping with the iron infusions (I’ve had 3) that my fatigue will get better. That’s probably truly been the worst and these “spells” that I’ve been having for over 2 years that present themselves like hypoglycemia but are not.

@sdcgcarroll, as you navigate the new world of essential thrombocytosis (ET), I recommend using the group search for related and relevant discussions. You can search for both keywords:
- essential thrombocytosis https://connect.mayoclinic.org/group/blood-cancers-disorders/
- ET https://connect.mayoclinic.org/group/blood-cancers-disorders/

Hopefully some of your questions have been asked and answered. As @dewz13 said. others here have walked this path a few steps ahead of you and will guide you along the way. Keep asking questions. We got you.