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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (421)

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@nypara66

I’m dealing with PV for 2 1/2 years now and see my hematologist/oncologist every six months. All my labs and if there’s a dosage change, are dealt with through my My Chart. My Doctor has a great staff and I can always get a nurse on the phone if I have any concerns. The first year is tough mentally and physically. It will get better once your dosage is correct and you get a routine down. For me it was a shocker being just 56 with no other health issues. Also, the expense of all the labs and phlebotomies is very tough even with insurance. I’m grateful that the Hydroxyurea is super cheap and is working for me. It’s been around since the 1960’s and that is good to know as well. Good luck and stay positive!

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Replies to "I’m dealing with PV for 2 1/2 years now and see my hematologist/oncologist every six months...."

@nypara66 Thank you very much for responding and for the good wishes. I share your feeling of it being a shocker getting this diagnosis especially with no other health issues present and leading an active healthy lifestyle. Same here.
I hope you check in again. I plan to do the same. Although it is a rare disease, it's very comforting to know there are quite a few of us and we can learn from each other.
Getting ready for my labs draw now.