I am glad I did the hysterectomy. I don’t regret having it done. I understand wanting to get rid of that pain you have all the time. I have phlebotomy every other week for treatment. Fatigue, headaches and dizziness are my main symptoms. It causes me to get depressed. I am 49. Hysterectomy I was 48.
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)
I was actually going to have a partial hysterectomy do to endometriosis. Can be so painful and heavy. Thank you for sharing with me. I would like to stay without symptoms well fatigue. I’m 46
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)
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.
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.
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Did your wife not receive any treatment for her PV at all?
I just started low dose of Hydrea because of high hematocrit.
I am glad I did the hysterectomy. I don’t regret having it done. I understand wanting to get rid of that pain you have all the time. I have phlebotomy every other week for treatment. Fatigue, headaches and dizziness are my main symptoms. It causes me to get depressed. I am 49. Hysterectomy I was 48.
I was actually going to have a partial hysterectomy do to endometriosis. Can be so painful and heavy. Thank you for sharing with me. I would like to stay without symptoms well fatigue. I’m 46
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)
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2 ReactionsDoes 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.
Our Oncologist / Hematologist told us that that wasn’t an option for my wife. We see the Oncologist every six months. No other treatments.
I had symptoms for many years finally diagnosed three years ago. Jakafi twice a day helps with symptoms. Phlebotomy as needed. I am 82.
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2 ReactionsAs of now my treatment is phlebotomy twice a month with blood testing on the opposite week.
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2 ReactionsThank 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.
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Hug
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