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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (421)Comment receiving replies
Hello, Ive had PV for almost two years, Im 76 years old. I'm slightly overweight other than that I'm healthy. As the previous person said the first year was the most difficult for me I didn't handle the diagnosis well emotional/psycologially...I became depressed and sedentary...Hydrea dose was changed regularly which also weighed on me even though other than sleep I had none of the negative symtoms of hydrea. After 8 months I decided I was going to quit feeling sorry for myself, eat healthy and get moving...This approach has done wonders for me. Other than taking the hydrox and Doctor visits I don't think about the polycythemia ...I get my care at a major academic cancer institute and see a Nurse practitioner but my attending Oncologist/Hemotologist always sees me after. Some other advice is learn as much as you can about PV and hydrea, You tube has several polycythemia specialists that discuss the disease. Also when you visit your Doctor go with a list of questions because when you with your doctor I would forget questions I had. I'm also thankful for this forum as it helps me understand I'm not alone...Good luck and continue with all the questions you can think of.
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It’s a comfort to know you and others had the same initial experience when diagnosed. My GP sent me for the JAK2 testing after he found my high hematocrit level. It was positive. But, he never told me PV was cancer. Neither did the first hematologist I saw! It was only when I googled PV that I learned about it and, like you, I panicked and confronted my GP, who I’ve had for over 45 years! He told me to calm down, told me with proper treatment I had many years left. I was depressed and at first felt hopeless. I had never really been sick before except for severe anemia in my 30-40’s (ironic, right?). I over ate, I mean why not? And, waited. Then I realized I was getting better, slowly, feeling better and the “numbers” were better. And, realized I needed to get over it! It’s under control and I’m down to seeing my MD every six months and I’ve adapted to the symptoms I do have.