Lots of good comments here. Just remember that everyone had a slightly different journey. I see where some people have very little intervention (such as only low dose aspirin), moderate (varying levels of HU for many years, and others that move to more potent medications (Jakafi, Besremi, etc).
I was diagnosed 8 years ago and did fairly well on HU for about 3 years, no real symptom load typically associated with ET. I did end up on a high dose of HU to control platelets. Then I became intolerant to HU - lost 30 lbs in less than a month; and ever since have had symptom load gradually increasing - especially fatigue. Have been on Jakafi ever since starting with 5 mg 2X/d and now on 15 mg 2X/d. Increasing as my platelets slowly increase.
I was going to a really great hemeotologist. 4 years ago attended a LLS (now Blood Cancer United) conference and asked about specialists in MPNs. Fortunately, one was located in the metro area I live. Went to see him for a 2nd opinion (by the way never feel guilty to do this). What I liked was he is involved in clinical trials, so I let him know my interest in participating, while remaining with my current doc. Applied to a trial and have been with him ever since. Ended up not qualifying for that trial but am now currently on a different one (unfortunately on the standard of care arm not the test drug).
Just remember that you in control of your health. Not all hemeotologists are as aware of MPN so consider finding one the few true specialists (west of the Mississippi, there are probably less than 10) to get 2nd opinion. You may have to travel but it is well worth it and the 2 I have visited with (the second only because I am thinking to move to that area) are willing to work with your current doc. Educate yourself, good resources are from Blood Cancer United, MPN Research Foundation, Voices of MPN, among others. All have literature and some offer counseling, financial support, etc.
Know that you are not alone, but trust your doc, be careful about random advice from other sources as started this post - only you will be the true expert for you.
Best to all.
@drbart86
For those looking for a specialist see this website
https://mpncancerconnection.org/mpn-experts/