Essential Thrombocythemia: Making treatment decisions

I also have ET JAK2 diagnosed in June 2023 at age 72. Platelets were higher than normal for many years and doctors ignored because only 460-525. In 2017 was contemplating spinal surgery so went to hemo/oncologist and was given genetic testing but negative for MPN mutations but positive for Leiden Factor V. I didn't have surgery and again nothing done about platelets.
Then I was feeling fatigue and just off since having 3 covid vaccines in 2021 so went back to hemo/oncologist in 2023 because platelets were increasing to 600s. This time, I was JAK2 positive so diagnosed with ET. I had been taking 1 baby aspirin for 15 years so continued that daily dosage. I was not given any other meds for the ET even though at age 73 now I'm considered high risk. My oncologist wants to wait until platelets are over a million to start HU. But he did say with my Factor V blood disorder he will consider starting HU at 800 platelets. My last 3 month test was 673 so I'm just worrying, waiting and fatigued. My mother died from blood clots at age 56 after surgery but we didn't know that she obviously had ET until I was diagnosed. I have no history of blood clots but taking meds for high blood pressure and high cholesterol which are both controlled by meds. Wow, I need to print this for my medical records and show the oncologist next week.

mw2023, I was started on HU with platelets in the 600/700s. As I have the MPL driver, it's been a challenge to bring the count down.

But while I'm still not quite there yet, HU has given me my energy back.

This makes a huge difference to my quality of life. It's also really good to know that HU is safeguarding my bone marrow.

In my opinion, when you see your oncologist next week -- discuss starting HU.

While there's some concern about taking HU for 30 or more years, for me at 70 and you at 73 -- this is probably not an issue. For me at least, HU has been a game-changer.

What is HU? is that Hydroxyurea?

What is HU? is that Hydroxyurea?

I was diagnosed with ET JAX2+ on 4/30/25 with a count of 553. My hematologist put my on baby aspirin. Today, I notice a purplish discoloration under the nail bed of my right big toe!! I've emailed my doc. I am afraid this is a small blood clot...ugh!!

I'm am looking for various areas to maybe retire. Arizona is in my potential areas for several reasons. I have ET, does anybody go to the Scottsdale Mayo clinic? If so who is the ET specialist there? I would like to be able to visit there prior to making a final decision. As we do deal with an uncommon condition, I want to work with a true specialist. I am currently with one in Colorado.
Thanks in advance.

I have seen Dr Jeanne Palmer MD there. She is a specialist in ET. She is wonderful. Intelligent, communicates well, current with the latest research and very kind.

I have seen Dr Jeanne Palmer MD there. She is a specialist in ET. She is wonderful. Intelligent, communicates well, current with the latest research and very kind.