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!

[@MM-xt7hk]

Let me as are there any online forums or places where poeople could discuss this simptoms? What is rbc level?

[@MM-xt7hk]

God bless you.

[@Kitimaniac]

@@MM-xt7hk my RBC level was 5.36 (Canadian numbers, not sure where you are) before my last phlebotomy, will have a blood test this week to see how much it dropped. I found a support group on Facebook this year: facebook.com/groups/180180118669211/ I'm sure there are more, try doing a search to see if any come up off Facebook!

[@staciecolville6605]

My 16 year old son was just diagnosed....i am soo scared. I am waiting for the oncologist to contact me

[@Kitimaniac]

There's a few polycythemia vera pages on Facebook

[@barbaraclancey9800]

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

[@natelindsey7778]

Hope you’re doing well!

[@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.

[@natelindsey7778]

How are you doing now?

[@karenconquest658]

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

[@lionhearttt3540]

Hi how are you feeling now ? I too may have this diagnosis I have to do another blood test shortly, my haemoglobin isn't extremely high but is slightly elevated

[@karenconquest658]

@@lionhearttt3540 hi I’m ok thank you. I hope you are ok and hopefully once you have more blood tests it may turn out not to be this. let me know how you get on. Xx

[@Mason_000]

@@karenconquest658 i have high rbc, hgb and hct, and out of symptoms i have blurred and doubled vision. I'm 21 and I'm scared i might have this

[@gfurrow]

@@Mason_000 Hope yeverything turned out OK and you didn't come back with PV - prayers..

[@natelindsey7778]

@@lionhearttt3540did you ever get a diagnosis

[@lauraw3338]

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

[@MM-xt7hk]

Hi madam. Let me ask you what is rbc level? Let me as are there any online forums or places where poeople could discuss this simptoms?

[@MdAli-lr4nn]

What is live expentancy

[@fannyalbi9040]

so what is treatment? just drain blood or on drug?

[@lauraw3338]

@@fannyalbi9040 -I had 6 pints drained off me. 1 every 72 hours. Once your blood levels are stable you can take Jakafi. That is if you carry the JAK 2 gene.

[@lauraw3338]

@@MdAli-lr4nn -I’ve had PVera for 20 years and I’m good. My world authority doctor has told me I’ll live a pretty normal life. You just have to have a CBC every 30 days. You have to be careful when it comes to your blood levels. If you do nothing you’ll be dead in 18 months.

[@alijaberi9852]

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

[@MdAli-lr4nn]

Pv is cancer

[@Kitimaniac]

@@MdAli-lr4nn it is classified as a cancer, but it doesn't metastasize throughout the body. It was called a 'blood disorder' until recently, then was changed to cancer designation, mostly to get more funding for research, and so patients would get better coverage for their medical needs. If I had to have a 'cancer' I'd definitely pick this one! The chances are good that I will die with it, not from it.

[@natelindsey7778]

Hope you’re doing well still

[@firetech700]

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

[@roobiyorays8398]

Hi there, I haven't heard any medications for pv, just blood withdraw, if you pls mention that medications I will share with my doctor

[@jhern1990]

What's the difference if you have no mutation

[@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

[@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.

[@deborahmclaughlin7862]

I have the same problem also loss of appetite

[@heavy-d6616]

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

[@tanitaf1345]

I have weeks that I can't even stand, so tired..

[@rlove3222]

Fatigue is the worst symptom. Bone pain in hips and long bones too. I was dx'd first in 2003 and again in 2013. Not much was known in '03 in my area.

[@RisingNutrition]

Can I ask if your jac 2 mutation was normal? I was diagnosed with idiopathic PV

[@bobbyperu8414]

Shin bones

[@stella-vu8vh]

Same, also fractured my spine a while back, hip and low back issues, constant unbearable pain, fuckin miserable

[@rosaliediaz8871]

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

[@sevenhalves736]

Hi Rosalie! Not a doctor here but from my understanding, you want the best diet for the heart. One that will help prevent blood clots as much as possible. From the research available it seems that a whole food plant-based diet, preferably one that is lower in fat is the best there is. This is the only diet ever proven to reverse heart disease in patients. Just my two cents. Wish you a long healthy life!

[@Kitimaniac]

I have always just eaten what I want, diet won't change things, keeping your numbers in normal range is the biggest help there is!

[@fannyalbi9040]

some said diet that not suitable for anemia good for pv

[@donmulder8061]

Just become a health nut. I exercise daily and consume a Mediterranean diet. I have a daily fruit and veggie smoothie as well. I got my weight down and keep my blood glucose and HbA1C down as well. I also now take a cholesterol drug to get my cholesterol in the right range. Overall, I just became extremely selfish about living a healthy and fit lifestyle. In a weird kind of way, it's been good for me.

[@CrispyOkra]

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

[@isaacanimkoranteng3773]

BrainStem Recruiter sorry... :-)

[@sherstone]

I hope to ease your worries... I was diagnosed with this just last year at 56 years old. I went back into my health records and found that I had had it for at least 10 years prior. No doctor had ever red flagged me for showing too many red blood cells in a CBC. All it took was a positive for the Jac2 mutation and that was it...they diagnosed me with PV. It happened so quickly I went into instant depression and fear mode because it was referred to as a cancer. I started reading about this disease and looking for a doctor with lots of experience treating it. Between those two things I was able to understand that this is really NOT a cancer; it's a blood disorder, a clotting disorder. My doctor who has had 40+ years of experience as a professor at UCSF does not consider it a cancer. This used to be considered a blood disorder until recently. I believe they reclassified it as a cancer to get funding for research. There are NO cancer cells floating through your blood stream looking for an organ to invade. The definition of cancer is basically when cells start doing something abnormal; usually referring to mutation. That is not what's happening with PV. You are making too many red blood cells and your blood is thicker than normal as a result. The risk is obviously stroke and heart attack BUT that's why it's important to treat it with aspirin to thin the blood or remove some blood if needed. My phlebotomies usually last me about 3 months. My treatment includes a monthly CBC and if needed, a phlebotomy; which is exactly like giving blood...no big deal. I hope this helps you and I hope you find a good doctor with experience with PV. :)

[@CrispyOkra]

@@sherstone Thank you! 💕 I'm fortunate that my doctor didn't actually call it a cancer. I found that out with my own research, while also finding with proper treatment people are able to live normal lives. I was given a phlebotomy the day of diagnosis (last Tuesday) and am already feeling better.

[@sherstone]

Glad I could help! It's true that people can live full lives and not die from this, but something else...like old age. I wish you well! :)

[@ashuoctk1270]

AtomicPickle1 ,,,,hey I am from India I am not yet diagnosed but my PV 53% and HEMGLOBIN 18.6 doctor said to check with remove your blood and jak 2 mutations....can you please guide

[@Edathoduvil]

Why doctor recommend epo test ? When I have high rbc

[@MUSKANSEHGAL]

Feeling good 😬

[@lornagunn-niska4524]

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?

[@jasonbushell7080]

Hope you’re ok. I have a consultation on Friday regarding a PV diagnosis.

[@Kitimaniac]

Yes, the mutation in the JAK2 gene is the definitive diagnosis for PV. If no mutation then could be secondary polycythemia, usually caused by sleep apnea or something else treatable.

[@natelindsey7778]

@@jasonbushell7080 how are you doing now?

[@bonglicious9956]

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

[@NileshKumar-Dl1wli]

Do you have any symptoms of pv please reply sir

[@bonglicious9956]

@@NileshKumar-Dl1wli high RBC and high hemoglobin ... symptoms I don't have any noticible. only mild headaches sometimes..

[@NileshKumar-Dl1wli]

@@bonglicious9956 what is aspirin bro... Htc no...

[@babumanu895]

i too have the same condition i had high hb level of 20 , doctor tested jak2 and mpn reflex panel test two times and both times the report came as negative ( no gene mutations) but my rbc count is increasing and getting phlebetomy every 4 months he diagnosed idiopathic erythrocytosis ... he has told me it is almost similar to pv but thrombosis risk is low

[@rabatia-jawhara]

same problem of my son ...

[@SAAINYT]

Any cure??

[@lauraw3338]

Rana Bilal 126 -no

[@SAAINYT]

@@lauraw3338 what I can do?

[@Apex_grind562]

There is a cure. THE BLOOD OF JESUS. But pray with wisdom and dont neglect physicians.

[@donmulder8061]

@@Apex_grind562 👍👍👍👍👍👍