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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)Comment receiving replies
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?
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Hi Lori, thanks for all your amazing support and information. My family is finding the articles very helpful as well.
I am not Jak2 positive but the oncologist said I have PV and won't likely need a bone marrow biopsy for a couple/few years. I'll get the ultrasound of my spleen for a baseline, I'm not a large person and he said there would be a bulge if it were enlarged with my size and I have no pain there. I'll get a brain & lung scan at some point for a baseline with the fact I've had bad headaches my entire life, often due to allergies/sinus. The more recent past few years have been different, not the same location and stabbing intense pain so just to be sure nothing else is going on or to see if I've ever had a bleed. I've been in major car accident with internal bleeding (my spleen but it stopped after a few days, more like a leak) and have had falls of 25+ ft with broken bones etc. I was rather active and a bit daredevil as a kid, my back is paying for it with a complete degenerated disc but keep it in check with keeping in shape. That has been harder lately with the SIBO last year and then the PV creeping up on me.
Sorry for novel, wanted to give some background.
If I'm not Jak2 positive could that mean it may not be PV but could be something else?
My lungs are sensitive and I get pneumonia easily but always when I run myself into the ground and didn't rest when quite sick.
Is there a good article that explains if you're Jak2 negative, I can still have PV with my hemoglobin & hemocrit levels?
Thank you for your help & support!