Anyone else have ET (thrombocytosis) with no gene mutation?

Hi Meg,
I am 74 and have had ET triple negative for over 17 years. I am currently on HU for 12 months. Platelet level January was just over 700. Slowly going down. My dr said all the tests, which there were many, have come back with negative as an answer. So no answers here either. Dr said we are a very rare breed. She is interested to see what happens to my levels after I have an operation to remove half of my thyroid. This should happen, hopefully sometime in April. Very frustrating, but what can we do. Hang in there. Cheers Lynne

Hi Lynne thank you for sharing your experience. Well I guess we are rare breeds indeed. Best of luck with your surgery in April. It would be wonderful if the procedure lowered your platelets but I suspect that is wishful thinking. 🤔

Thank you and all the best
Meg

@mmkennedy

Before your March 5 appointment, may I suggest some homework?

Browse through the ET threads here. You will learn so much about living with this condition. And live with it you can, for a long, long time. Now that you have a diagnosis, you're ready to take charge.

Nobody knows what causes any of the MPNS, of which triple negative ET is one variety. You did NOT do anything to bring this on yourself.

Being better informed means you can make the most out of your time with the oncologist, which will probably be less than five minutes.

Arrive with a list of questions, such as:

- Would low-dose aspirin be helpful?
- What are the risks/benefits of my taking HU?
- If HU would be helpful, will starting with a low dose minimize the risk of side effects?
- What's the best way to take HU?
- When will my next blood test be?

Take a notebook and write down the answers.

We're all on your side. Reach out, we're here to help.

Hello. I am triple negative ET, but I have ASXL1 mutation. Some debate among my doctors whether that could drive the ET. It is not recognized as a driver mutation. Tat mutation found along with another novel mutation from NGS analysis of my bone marrow. I take HU and baby aspirin daily. This treatment reduced my symptoms

@eloise999 Thanks for sharing. Interesting that there are so many mutations that can influence platelet count. I’m glad the medicine regime is working for you.

Cheers
Meg

@janemc Thank you for those suggested questions. I will use them! The only challenge for me is that I am seriously allergic to aspirin and all NSAIDs. I get anaphylaxis response when taking it. So I guess the question is there another alternate blood thinner?

Good idea with the notebook and pen. I’ll also bring my sister to help listen and ask questions!

But I do suspect I’ll be put on HU.

Excellent idea to bring along another caring person.

Absolutely mention your aspirin allergy, because an alternative plan must be made.

The diagnosis phase is overwhelming. I assure you, it gets better.

Hi Meg and others,
I have ET and I am also a triple negative. I have had this since 2003 (23 years). I am 71 yo now. I have been on baby aspirin for 23 years and Hydrea for the past 11 years. We probably do have a gene mutation but one has not been identified as yet. When I was diagnosed they did not know about these mutations. Since then scientists learned about the JAK2, then MPL and CALR. I hope one day science will tell us why we got ET, how these gene mutations happen, how it can be prevented, how we can stop the progression and maybe even find a cure. Until then I hope we can stay healthy and positive and live fulfilling lives. I appreciate everyone who joins this online group, reads these posts, comments, seeks answers, supports, encourages and contributes to this community.

@mmkennedy I had a mild heart attack in August 2023, (probably caused by high platelets - my thinking) and in the hospital I was prescribed Brilique (ticagrelor) for one year. After that year my cardiologist prescribed Plavix (clopidogrel) instead of aspirin. I have no problem taking aspirin either, but now I am on Plavix. (= "A prescription antiplatelet medication (blood thinner) used to prevent serious cardiovascular events like heart attacks and strokes by inhibiting platelet aggregation.") I seem to tolerate Plavix just fine.
My ET/JAK2 was not diagnosed until February-March 2025, even though my platelets had been slowly going up since summer 2021. After my diagnosis I was prescribed HU 500mg 5 days a week. I delayed starting taking it until Dec. 2025. It has brought down platelets only little to ~ 640. My hematologist may be waiting for results from my bone marrow biopsy to adjust the dosage.
Hang in there.
- Hipsu 🙂

Thank you for sharing your story. It is good news to hear that you survived your heart attack and it was a mild one. I hope you have fully recovered by now. Thank you for sharing that you take an alternative to aspirin and that it works for you. I’ll definitely ask about that medicine as I’ve heard about it as an alternative. Best wishes.
Meg