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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (400)

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@ausableriver

New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?

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Replies to "New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google..."

Welcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google. While there are worthwhile information sources some of those sites lead down rabbit holes filled with needless stress and anxiety.

You were recently diagnosed with Polycytmenia Vera. While it is classified as a type of blood cancer it is often very slow to progress and generally controlled through phlebotomies (having blood drawn to reduce the volume of red blood) and when needed, there are medications to help keep things in check.

Primary PV is caused by an acquired mutation which can happen randomly. It’s most frequently the mutation of the JAK2 gene. When that happens the defect can cause uncontrolled cell production as in PV where the red blood cells in overdrive.
https://www.healthline.com/health/polycythemia-vera
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Secondary Polycythemia doesn’t involve a mutation but the cause can be from an underlying condition such as kidney, lung or coronary problems, sleep apnea, some medications.
https://www.healthline.com/health/secondary-polycythemia
There is an active support group for members with PV. I’ve posted the link below where you can meet members @pmm, @robinll @nypara66 @learnandlive @itsmepeggysue @new2this @seamus1010 @csgreetings and many more.
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Were you having symptoms which led to your diagnosis or was this a random find during a blood test?