Behind the Mystery: Living with Polycythemia Vera

On Behind the Mystery, we’re investigating a rare blood cancer which causes overproduction of red blood cells. It’s called Polycythemia Vera (PV), which can result in serious health problems such as heart attack or stroke.

Though there is no cure, patients can keep their PV under control through early diagnosis, dedicated physicians, advances in research, and evolving treatments.

Meet experts Dr. Richard T. Silver, a professor of medicine at NewYork–Presbyterian/Weill Cornell Medical Center, and Dr. Srdan Verstovsek of the MD Anderson Cancer Center, who discuss the latest inpatient care and clinical trials for PV, as well as the future for those living with PV as a chronic illness.

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[Kitimaniac]

I was diagnosed at 15, am now 63. Phleblotomies only now. That man was right, you'll probably die 'with' PV, rather than from it, as long as you keep your numbers down in a safe range. Letting numbers get too high is what causes most of the symptoms, like clots, strokes and heart attacks, so keep your numbers in check! Good luck all!

[barbaraclancey]

I am 61 yrs old, and have been diagnosed with PV for almost 2 yrs now. Interesting site to read order people’s comments.

[karenconquest]

I have just recently been diagnosed with PV following a routine diabetic check, OMG I’m still in shock and feel awful, I have only just got the courage up to look at this video, it’s those words cancer that instill the fear. I am encouraged to hear that if numbers are kept low it has a good prognosis. Love to you all.xx

[MalikaBourne]

I think that I should have been diagnosed more than 50 years ago.
The problem for me was that I frustrated the docs with so many seemingly unrelated complaints involving multiple systems.
The ball got dropped and I was not treated for years with a number of big mistakes. I had to change my care systems several times. The docs would not RX my hydroxyurea - I got blisters on sun-exposed skin within 5 minutes.
I was short of breath, very weak; my skin looked like I was dead; I could barely get out of bed.

I just started on Jakafi and finally had my first 2 phlebotomies under the care of amazing hematologists who don't even think I'm crazy making up this stuff. Now, I am feeling better, but not there yet.

[lauraw]

I was diagnosed with Polycythemia Vera 4 months after having my daughter on 2/26/2002. I was in my early 30’s at that time and now 50

[alijaberi]

Thanks for the intersting information becauae i suffer from PV since 2004.

[motionless_horizon]

I’m getting tested for this along with myasthenia grivas. I’m 15 with other conditions as well, but PV would suit the symptoms that the other conditions don’t cause. I’m scared for what it’ll mean if it comes back positive, but at least I’ll have answers

[firetech]

This video was 4 years ago. There’s a few new medications available now.
I’m a 42 yo female with pv, diagnosed at age 32, and realized I’ve had it at least since 14/15, as I found an old blood lab proving it so. Also, I’m in the few % that has no mutation. Rare case

[heavy-d]

I was diagnosed with PV in 2017 after bone marrow biopsy .anyone have issues with bone pain and no energy?

[wraithinferno]

Im 28 and was just told about a week ago that im already on a list for bone marrow biopsy.. Probably not getting it til June since they said they are pretty booked.

[deborahmclaughlin]

I have the same problem also loss of appetite

[rosaliediaz]

I am 50 yo and recently diagnosed with PV, any diet that you can recommend?

[aishaaisha]

My RBC 5.91 hematocrit 44.6 hb 14 is it normal?? Plz tell 😢

[Edathoduvil]

Why doctor recommend epo test ? When I have high rbc

[CrispyOkra]

I was just diagnosed with PV (STAGE 2) at the age of 44. 😟

[bonglicious]

I am 30, have been facing high hemoglobin since teenage. I have been tested with jak2, exon, epo and lots of other test and every test is normal....the doc doens't know the cause...so advised me to donate blood and to be on aspirin

[lornagunn-niska]

I had bloodwork done and my JAK2 v617f was abnormal .... mutation detected. Have another 3 days before my appt, Is it pretty safe to say I have PV?