I have Polycythemia Vera (PV) | How I Found Out, Treatment, and Next Steps

Interesting...I have been diagnosed as well about two months ago. My hematologist said PV is a low grade leukemia. There are risks of it developing into more serious or higher grades of blood cancer as well. Not trying to scare you. But it's important to know that so you watch out for it. God bless you all in your journey with this.

I was told I had this three years ago. I didn't know what it meant and my MD didn't do much about it. A year and a half ago I started having fatigue, not knowing it was related. I started going to the health club. I do 25 minutes on the stationary bike, and it helps with fatigue. I recently started having itchiness on my back, and dizziness. Vitamin C and D seem to help the itchy back, and I've started taking 81 mg aspirin. Knowing that this might be blood cancer, freaks the hell out of me. I will continue to educate myself about this and battle it in every way i can. I've had health battles before and this is my new one. I don't know if i'll win this one, but i will put up a fight.

Thanks for sharing your story , I was diagnosed in 2016 with PV, am an Africa American in which these blood disorder is mainly diagnosed in Caucasian men over 50 , I was shocked to hear about my diagnosis but like you said I r rather have PV than any other blood disorder. My P V is under control now that’s to the treatment and change that I had to make was my diet , I don’t eat red meat in which that one change helps my blood count . I drink nothing but alkaline water as well plus take my meds. Again thanks for sharing your story n again people your body it will give you symptoms.. ❤

My mom recently passed from PV. It was horrible. It sapped her energy, she ended up with no appetite, couldn't tolerate the chemo drugs. I found her deceased in her bed... out of the blue. Worst day of my life. I hope you keep positive and I'm sending much love to you! ❤

I'm on the verge of possibly being diagnosed with PV. Will find out more in a week or two. Your video and story has made me feel much better about my future. Even if my tests come back negative, I would like to thank you for easing my anxiety over this potential diagnosis. Hopefully this comment finds you still doing well.

I have a diagnosis of PV. I'm 54. I got back to my hemotologist soon and will get things rolling. Thanks for the info.

I have had PV and Hemochromatosis for 16 years. My symptoms and blood numbers have gotten worse in the last few years. I cycle 3 times a week and exercise and do resistance training. It is difficult to exercise sometimes but it really does help with the blood circulation and pressure. I actually suffer from Anaemia due to regular Phlebotomies ( every 1-2 months). I take an iron supplement even though I have Hemochromatosis. Bottom line you will manage this disease mostly by adapting to YOUR particular condition.

Thank you for your video, Xan. I was diagnosed in 2012. I had an episode of chest pains and went to the ER. They kept me overnight and ran ever single cardiac test they had but the only thing they flagged was that my platelets were elevated. They told me to follow up with my primary care doctor. Like you, he did a CBC again and said he was referring me to a Hematologist. I had NO idea that Hematologists were also Oncologists! That doctor sent the labs he ordered to a lab in San Diego and two weeks later he told me I had ET, another form of Myeloproliferative Neoplasm, and that it was blood cancer. I was 56 years old. When my husband and I left his office, I got in our vehicle and began to cry. I felt WAY too young to be diagnosed with the big "C". We lived in a rural community outside Sacramento at the time. I told my husband that I wanted a second opinion from Stanford, so we called them and they called me in as a new HEM/ONC patient. After more testing, they told me that I didn't have ET, but that I had PV instead. Like you, since I was under the age of 60, my treatment was 81mg aspirin daily and monthly phlebotomies for four years. Once a patient is 60 years old, the standard of care for PV calls for cytoreductive drugs (chemotherapy). Why? Because patients age 60+ generally have more co-morbidities begin to arise and controlling the production of blood cells and platelets in the marrow becomes even more important. The first line therapy is Hydroxyurea,, which I couldn't tolerate due to side effects. This allowed my doctor to prescribe JAKAFI, which is a Jak2 inhibitor. The only complaint I have is that JAKAFI is designed for Myelofibrosis patients (those with the most advanced form of MPN's), whose spleens have enlarged and are unable to eat because there is no room in their abdomens. Jakafi was designed to stimulate appetite and interacts with the hormone leptin in the body. The end result is that my already healthy appetite became constant. The average patient on Jakafi gains 14-28 pounds slowly, over time. In the 7 years I have been taking Jakafi, I gained 26 pounds. With that weight gain, other health issues began to rise - high BP, higher Cholesterol and higher blood glucose. My diet has always been very clean and healthy, so this was very frustrating. This year, I finally told my Stanford MPN Specialist that I wanted to get off Jakafi and asked about alternatives. At present, we have weaned me down slowly from 20mg 2x day to 5mg in the morning only. We are waiting for my WBC count to get high enough to take an injectable drug called Besremi (a form of alpha interferon) to see if I can tolerate it. My husband and I have attended a conference hosted by the MPN Education Foundation at the Mayo Clinic in Scottsdale, AZ every other year for several years. Two Hundred and Fifty patients from all over the world come to hear MPN expert doctors and researchers talk about nutrition, treatments, clinical trial developments, and other things related to MPN's. I highly recommend this conference. It has always been very reassuring. The primary symptom I have experienced all these years is crushing fatigue that begins to set in by 3pm each day. It turns out that FATIGUE is the number one symptom people with MPN's report. The doctors are unsure why this is, but it is always on every symptom map when MPN patients are surveyed. Xan, thank you again very much for your video. I've had PV for 12 years and so far, have managed to have a right total knee replacement without PV complications and will likely have my left knee replaced in 2025. I want to remain fit and active for as long as I can. Best of luck to you. You are in good company as there are many people with PV in the world. Patricia

I was diagnosed with PV, Leukocytosis and ET just yesterday after a blood marrow biopsy. I have have been sick for several years with periods of remission. The last 2 years I’ve been in a nose dive with the last few months being nearly unable to care for myself bc of fatigue and dizziness. I have seen many drs with disappointing results. Over and over sent home sick, no answers and no follow up plan. I now see a hematologist whom I like, but he was watching my blood for almost a year b4 he sent me in for BMB. But even that turned into a fiasco with the first test was aborted and then I had to call over and over to get the test rescheduled. Took a month of trying to get someone to do their job. I am 67, alone and widowed. I’ve been begging for help, but the medical system makes me feel like they’d rather I just go home and die. Kind of hard to stay optimistic. I don’t want a response. Just putting it out there that there’s another layer to this for a lot of people. Insurance companies are paying doctors to NOT practice medicine. I could have been diagnosed a long while ago but I suppose they saw me as a hypochondriac, but my myriad of symptoms were real and they just didn’t care. Yes I am preoccupied with my ill health. When you’re sick and alone it’s terrifying. I worry I will die and my dog will have to use me for food. Just saying.

I was diagnosed with PV on December 2016 and I am from the Philippines. Thank you for sharing what you have been experiencing. God bless you.

Thank you for your video. I was just diagnosed with PV and had that same "pity party" since being told. But., then I saw your video and am glad I did. I feel better after listening to you and seeing your positive attitude. I think I can now adopt your philosophy and live my best life. So thank you for doing this.

I also developed Left Ventricular Hypertrophy due to the thickness of my blood. They draw my blood every two weeks. It sounds like it affects each one a little different. On a better note I am glad you made this video. Thank you and God bless

I am a 65 year old grandmother who has been through a great deal of trauma in the last few years, and now this! (Doc not certain; still being tested for JAK2). Thanks for your information!

Great video. I was diagnosed with PV in 2018 at 49 after they diagnosed the JAK 2 mutation. On Hydroxy carbamide and aspirin daily and run a haeomaticrit of 42 to 45% and maintain a healthy regime. I agree on the google information which was massively inaccurate. Very informative video.

My missus has just been diagnosed with this, and we have never been as scared in our lives as we are now. Anything positive is welcomed, so thanks for this. She has been diagnosed early, and that is only because she had the good sense to ask questions about her headaches and tiredness. I would suggest that asking questions, and not holding back because you think that you are asking stupid questions, has saved her a lot of trouble in the future. My best wishes to everyone watching this.

Thanks for this video, my husband was just diagnosed with PV, also 39 years and together we have 4 kids, my husband is not as athletic as you, however watching your video has given me peace of mind. The positive thing about diseases is that they help us to value the time we have with our loved ones and to prepare for the afterlife, because no one has a guaranteed life.

Thank you. This beginning part is scary and you have made me feel much better about the next steps to come.

I was diagnosed with Polcythemia 8 years ago, and that was it, now I am 56 as of last month, was recently hospitalized and now my hemoglobin and hematocrit is through the roof, and now explains a lot of other health issues I have. I have had 3 silent heart attacks since the age of 48, I eat healthy, but am also a diabetic,and have issues from that as well. I have circulation issues, clotting issues etc. WBC has been high as well and no infections. I'm starting to get scared. thanks for your video, it has eased my mind a bit. I am now looking for a new PC I have 5 grandchildren and a new great grandson to live for. had a CT two weeks ago that showed I know have a blot clot on my aortic valve,and I have all the symptoms except for the enlarged spleen and nose bleeds. I'm just scared that my next blood work up will show that I have advanced to Myelofibrosis,The “spent phase”. Hope this comment finds you well. God bless you! One last thing, thank you SO much for making it a pertitnant point to go see your PCP My dad never went, "didn't need to" didn't smoke, drink, and died suddenly when he was 48, my son's father was the same and died suddenly at the age of 34 both of heart attacks. people, PLEASE get a yearly physical.

I was diagnosed with pv 3 years ago and went through two months of weekly phlebotomy to lower my hematocrit and hemoglobin to safe levels and was taking hydroxuria until my liver started failing. I then was prescribed busolfan until that failed. I’ve been taking jakifi for the last 7 months and so far so good. The biggest problem for me is the constant fatigue but I try to stay active and have a positive attitude. You’re going to be fine with your attitude

I got diagnosed with PV also thank you for sharing it's made me feel better!!