This is a complex question with no universally applicable answer. It depends on a number of factors, including your genomic profile, MPN symptom profile, co-occurring conditions, treatment goals, and risk tolerance. There is no black-and-white answer. It is a judgement call on when to go with the more minimalistic approach vs when to treat more aggressively.

Part of the answer lies in your treatment goals. Preventing risk of thrombosis is an important treatment goal that needs to be addressed. Aspirin + phlebotomy can minimize this risk. However, the greater risk may be progression to myelofibrosis. This is particularly true when a non-driver mutation is part of the picture.

Managing the constitutional or secondary symptoms that can accompany PV is also part of the treatment decision. Many of the symptoms that can come with PV can have a profound effect on quality of life. Improving quality of life is just as important as extending length of life for many of us.

Determining your own risk tolerance is also an important part of the equations. We each have different priorities and willingness to tolerate adverse effects and disease symptoms. All of our options come with risks, including deciding to use minimal treatment strategies.

I was diagnosed with ET over 30 years ago. It progressed to PV about 11 years ago, but i was misdiagnosed and the progression was missed. I also have a non-driver mutation (NF1) that increases my risk of progression to AML. For most of this time, I treated with aspirin only. When the PV was identified, I started treatment with hydroxyurea + phlebotomy. I turned out that I was refractory to and intolerant of HU. I opted for aspirin + phlebotomy for a while, but the adverse effects from the phlebotomy-induced iron deficiency were worse than the PV symptoms. I stated on Pegasys then switched to Besremi when it became available. My quality of life improved significantly using the Interferons. The erythrocytosis is well controlled and my JAK2 allele burden has reduced from 38% to 10%. I feel better now than I did 10 years ago. My only regret is that I waited as long as I did to start on the interferons.

While treating with Besremi is the right choice for me based on my MPN profile and treatment priorities, that does not mean that it is the right decision for anyone else. We each respond differently to the treatment options. We each have different treatment priorities. The best thing we can do is to clearly define our treatment goals, risk tolerance, and treatment preferences. This allows us to work with our MPN care team to achieve the outcome we desire.

Wishing you all the best.

I have opted not to start hydroxyurea also. I actually had many symptoms before my blood test showed I had any problems. Aspirin has helped my itching a lot, I also take benydral. Now that it is getting hot/humid I feel horrible again. I go outside and can't breathe, everything in and about me feels heavy. I'm glad we have a group who share experiences and we can talk about therapies, drugs, etc. 💗

Thank you for sharing all that you have learned about MPN's!

Jakafi works for me