Polycythemia: Are you asymptomatic?

Diagnosed in March 2021. Asymptomatic so far.

Thanks for the reply.
Can I ask what your course of treatment is?

Diagnosed September 2022. Was having headaches, dizziness, fatigue, numbness and tingling in arms and fingers, itchy skin, blurry vision. On and off for several months.

My wife was actually diagnosed with Polycythemia Vera in 1978. Back then it wasn’t known as a “cancer” just a blood disorder. Blood letting was the only treatment. When she became pregnant in 1986, she was a-symptomatic from then until 2017 when a routine blood test showed “blasts” as well as abnormal platelets and red cells. Currently her only symptoms are itchy skin, fatigue, spleanomeglia, and heat intolerance with hot spells.
My point is this disease can go undetected for decades. She is now in a “Milyofibrocis stage.

Thank you for posting this. I was diagnosed in 2010 at 60 years old so am looking forward to health and happiness for years to come.
All the best
Prayers for a breakthrough cure.

As of now my treatment is phlebotomy twice a month with blood testing on the opposite week.

I had symptoms for many years finally diagnosed three years ago. Jakafi twice a day helps with symptoms. Phlebotomy as needed. I am 82.

Our Oncologist / Hematologist told us that that wasn’t an option for my wife. We see the Oncologist every six months. No other treatments.

Does have tested positive for JAK2 mutation mean you have a MPN? Very confused. I was having intermittent high white blood cell counts and they sent me to a hematologist. The wbc came down naturally. So I just have blood tested every 3 months. I’m tired easily and have low iron. But that could be totally related to heavy periods.

I didn’t get diagnosed with JAK2 and PV (2022)until a year after a hysterectomy (2021). (They think the heavy periods were masking.) Periods may be a blessing in disguise right now for you. (Lol. I am still low on iron too, even after several courses of infusions. (2020)