Wow, you're not stepping off on the right foot. Having confidence in our care team is essential. First off, good choice getting a referral to another clinic/specialist.
Most important is for the two of you to become strong advocates. Knowing treatment options, as you do, is very important. HU is the most prescribed treatment due to cost and simplicity.
I have no medical credentials, but I have experience due to family history. My thought is that ET, at the current platelet count is not the catalyst for current hardships.
Cytoreduction, regardless of choice, has potential to create diminishing quality of life. Therefore, seek second opinion after diagnosis confirmation.
Wish you both well, keep informed and be strong.

Thanks Ken, and sorry to hear about your Mum.
We’ve decided to get transferred from our local hospital to a specialised hospital in MPNs for better treatment 🙂

Hi Leona, I personally have lived with platelets in 500 range for many years, but was never diagnosed as my GP felt it to be insignificant. I was asymptomatic during those years. My current hematologist, treating me for PV, also has the same view. I am still hovering in the hi 400s low 500s.
Concerns about treatment would not be triggered before a 1 mil count.
My mother had several complication factors during her MPN journey. Hypertension, diabetes, thyroid issues and heart conditionS. Her heart condition mimicked several mpn related symptoms. She lived for 7.5yrs with phlebotomy only treatment. She tried HU for 3 months and stopped, quality of life was non existent. She died at 87, she was still prolific which would suggest she had not advanced to leukemia.
Just a consideration. An MPN diagnosis is not always the catalyst for current symptoms.
Therefore, health evaluations are critical for determining the correct course of treatment.
Wishing you both reasons to smile.

I’m confused by your referral to the JAK2 gene mutation being “activated”. This is an acquired mutation, and I don’t believe anyone here with it knows how they picked it up as science does not yet know definitively where it comes from. I want to speak to the Hydroxyurea, which I’ve been on 24 of nearly 25 years. Your doctor should be able to clearly articulate why they feel this is the best treatment for your partner, so it is important that you ask this question, regardless if it is Hydrea or interferon, they need to be able to justify their decision. I recall being told some years back that this is the best treatment for me because it attacks all the blood levels, which looking back I believe was when I was transitioning from ET to PV, which are very closely related. It is important not to add a bunch of supplements without talking with the doctor, as things can interact in unexpected ways, and we should generally not try to be our own physician. I realize you don’t trust the one you’ve seen, so important that you find someone you feel more comfortable with and who will take the time to talk with you. And, your partner has a pretty complicated medical history, so another reason to not try to treat him yourself, I really recommend looking at all test results yourself, asking questions about anything you don’t understand, and keeping a notebook of information you’ve received and questions to ask. It’s a lot right now, but know that many here have lived with our MPN’s for decades. Deep breaths, you will get thru this. All the best to you.

I have not heard of rashes being early indicators of an MPN. I was diagnosed with ET in 2001, with PV in 2023, tho I believe I had been transforming for several years the Dr. did not make that diagnosis until I needed a phlebotomy. I had four of those and an increase in Hydrea to 2000 mgm/day, but that settled it down and I’ve been stable since November of 2023. ET and PV are very closely related, I’ve learned here, but both are treatable is the important thing. Deep breaths, you will learn as you go and there is support here. I strongly suggest a notebook, go back to the beginning of this, make a record and keep it up going forward. It will help. All the best.