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Same story as mine, I'm glad your doing well

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 am waiting for my provider to get back with me on my High RBC, HGB, and HCT

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

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.

April 2021 my diagnosis as well

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.

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.

Thank you for this video

They thought I had leukemia as a child about 10, I just turned 60, my PV causes high white cells and platelets. I had a stroke at 46, I have right side weakness and some short term memory effects. But I just take my baby aspirin and iron supplements.

Hi, can you please advise on whether you can take supplements like creatine, proteins etc…??? Or are these a risk for getting a clot ??

He has no update.. this video is 2 years ago? 🙏

U there bro?

❤this i have also since 2017 i check up to haematolgy or onkology always 3 months to control thanka 😊 life must go on even what happend folks regards!!

I just found out I have PV a week ago. You do need to get a physical every year but don't let them just check your cholesterol and blood sugars as my doctor has for many years. It wasn't until my oncologist for another cancer, had a full blood work done that we found this. I had to retire early due to the fatigue and it only took five years for the doctors to figure it out.

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!

Shortness of breath and headaches were my first symptoms. Please go to a doctor if you have this. My recovery took several months after I lost power in my right leg, but the phlebotomies work. (This vid reminds me i need to go in again) 😊 Thanks!

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! ❤

Thank you for sharing . . . I feel the exact same way after my diagnoses.

I have been using Fenbendazole,which is help heaps

Did they test your bone marrow or just check for JAK2 and your blood counts at the time of this video?

Thinking about finding cure

I got diagnosed 2014 I am now 68, I take my medication hydroxyurea to control blood count and looking for another 20 to 30 years and never ever think about death it's part of life soon be three score and ten😇

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.

So what are your Ferritin levels at ?

Hope you do well Zak!!!

I have polycythemia vera, about 20+ years now. I'm 85, get very tired, maybe that's fatigue

you can beat this easily . theres a product called mms that is heavily sensored so i dont want to say to much . theres documentaries that are on others platforms

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

Please try Serrapeptase or Lumbrokinase

Your articles about living with PV,what’s the future of dying with PV

Great descriptions. I'm on this learning curve too. Thanks for sharing.

I just found out last week.😢 thank you for your information God bless bro

I recently found out I have polycythemia but my doctor believes it is caused by being on testosterone I experience nerve pain pins and needles and get a rash on my face that’s what made my doctor check my blood and over the past 3 years my red blood cells have been high and my hemoglobin elevated as well

Do you take TRT? And doesn't TRT increase red blood cells?

I think I have this, iwent for a blood test snd have Jak2, an enlarged spleen, gall stones. Im having more tests to see what I have but its foing to be PV i am sure. Im worried about donating blood as i faint everytime i donate. Im trying to lose weight to help this but i dont think it makes any difference being skinny

I am 37 and looking at possibly getting this diagnosis. My RBC, Hemoglobin, hematocrit were high this week for the first time ever. Seeing the hematologist in a few weeks. Curious how high your levels were.

I have PV and just found out the end of march my primary care dr caught in regular blood test then sent to hematology only I am 73 and I am being given a good prognosis as far as another 13 years so i'm good. no need to reply just wanted to double down about getting regular blood work done. I never did until I hit 60 when I lost my health insurance I started going to the VA and they have been fantastic!!

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.

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.. ❤

As a veterinary medicine,It is eritropoietin which have RBC increased. But if you have PV, your body works to decrease because of high level RBC. So, Generally EPO value of someone with advenced PV can be so low level as 1-2. And my level was 7,1. But this test isnt enough on the purpose of diagnosing. My HGB value has been changing 16,7-18,1(but generally 17,4 I think) for 4 years. And My Jak2 test was negatif but I hadnt doctors do bone marrow test yet. We will see what my doctor will say. I think he wont because of age 26 and HGB value. If I hadnt told that I want to make Jak2 , my doctor wouldnt have confirmed that . Unfortunatelly, you have to be a doctor on your own.

Im glad you did this video. It has helped me.

I am newly diagnosed Oct 2022 at 56 yrs old by routine physical ,was first diagnosed with ET until I had BMB . Numbers were very very high ,both white and red cells and platelets over a million . I am working with doctors ,I had weekly phlebotomy now every other week ,I need to loose weight I want to loose weight,but I don’t drink or smoke either .

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.

Are you alive now?

Did your doctor talk to you about blood oxalates? Most likely not. My doctor didn’t even mention that my (secondary) Polycythemia might be affected by what I eat. No, Dr. Google can quite often be misleading, but I’ve always been interested in nutrition, and this made total sense. I didn’t know I shouldn’t cut them out suddenly, but of course I did. A few days later I began feeling like I had a horrible case of the flu which seemed to drag on forever. A few days later, one of my rabbit hole research led me to the topic of “oxalate dumping.” (The process your body goes through ridding itself of oxalates suddenly.) I would have thought I was only imagining this was what I was suffering from except for one weird symptom only a female would have. That really convinced me I had been oxalate dumping. About a week later, I was feeling so much better, but found I had been eating a high oxalate food I thought was safe. One last thing - you might find a lot of information about kidneys and oxalates, and you might think I’ve misunderstood the info. Do a little more investigating and you’ll fall into tons of info about polycythemia and oxalates. By the way, there IS a connection, because my kidneys were damaged with too much iron concentration. Good luck to you!

Would be helpful to look into suppressed emotions....

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 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.

Recently I am diegnosed pv but I have been feeling symptoms for ten Years. My spleen is enlarged. I feel very uncomfortable everytime.