Living with A Rare Blood Cancer, Polycythemia Vera
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- Опубликовано: 20 июн 2024
- Every year, millions of patients, families and caregivers are impacted by cancer in the United States. Some cancers are well-known, but others are quite rare. Polycythemia Vera (PV) is part of a group of rare blood cancers called Myeloproliferative Neoplasms (MPNs). PV occurs when the body produces too many red blood cells, which causes the blood to thicken. Thickening blood could lead to clots, which can decrease blood flow through arteries and veins. This in turn could result in serious health complications including heart attack or stroke. Join us as we discuss the diagnosis and symptoms of PV with a hematologist, Dr. Shachar Peles and visit with a very special patient. Learn more about PV and MPNs at www.VoicesofMPN.com.
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I was diagnosed with PV at 25. I am now 73 and still living strong! I have always participated in my my
healthcare plan with my hematologist. PV is manageable and you must decide how you will handle this
blood cancer as you live your life. My attitude is that I was diagnosed with this PV but I will manage it and
live life to the fullest. I am a praying woman and the Lord has used me and PV to demonstrate to others
through my testimony that life has its interruptions, but we can do all things through Christ who strengthens
us. My advice is to take charge of your health and keep moving forward. God bless.🙂
hi.what diet and medicine you are taking sir?
This is so motivational. Ever since you were diagnosed, have you had any blood clots ?
Can you please comment on some Symptoms of polycythemia.
This is so encouraging to know you're doing well after 40 plus years .
Very encouraging
I was diagnosed when I was 13 when I turned 19 I needed a liver transplant because I was told at the time it shouldn't be an issue I'm 23 years old now going strong joining Law Enforcement currently and have met the love of my life
Spectre 159 I had to have a liver transplant too because of PV. I was diagnosed at 17 and had my transplant at 22. It will be 18yrs in July since the transplant. I've been dealing with PV for 25 years.
Semko K How were you diagnosed? What was your blood cell count when you were diagnosed and what were your symptoms? Since you were diagnosed did you have any problems?
My hematologist immediately wrote me off because Im "too young" im 32 :/ but congrats on law enforcement and meeting the love of your life :) :) :) :)
Milk thistle may help rebuild the liver.
Wow! I did one year of alpha interferon for my liver the same year I was diagnosed with PV. That was the same year that David Crosby, a musician/guitarist/singer of CSNY fame. This was many years ago, but I saw him last year, live on stage, sounding as good or better than I ever have heard him. I cried through almost the whole concert as he was such an influence for me, both as an artist, and a survivor. You can/will know the same healing and spirit on your journey...I know it! I send you the greenest of wishes and lots of love my friend! Steve :)
I have PV and was diagnosed about 15-20 years ago. All I do is just get routine blood work. Don't do anything for it, I'm fine. I think people just freak out on the word "cancer."
My 17 year old son was just officially diagnosed today. Thanks for posting this and relieving some of the terror I'm feeling.
Don’t worry it’s bearable you don’t. Feel anything. Just live. A normal life. Accept, embrace it and change lifestyle and be vigilant with what u eat. Drink
More water
How are you today?❤
All these comments are heartbreaking to read hope you all find ur cure and stay healthy please fight with it as long as you can❤️
I’ve had this since 2004 I’m doing fine with medicine please pray for me
Getting my JAK testing tommorrow! I don't know how it would be, but I wish all of us living a long and prosperous life!
I'm getting mine next week. How did yours turn out? You ok?
I did. Awaiting for the reports 😢
I am currently 15 years old, and I’ve been living with PV since I was 10 months old
Gabriel B. Thank you for sharing
O my goodness...I'm Really sorry. We NEED to ban together, demand a cure, not manage a disease..... Me also, i want a cure...! We must ban together demand a cure, even if it means a cure!!!!!forget managing a disease...
We NEED a cure, especially you, as you're only 15... I'm so sorry... God Bless you. ❤🙏🙏🙏🙏
@@meganjarvis7970 No gluten/dairy/soy/sugar/GMO/food with a label..taking vitamins/good oils/minerals..probiotic...LDN..detoxing...Amour thyroid...removing excess blood...Vit K2/fish oil/Zn/Mg/coenzymated B vitamins and more may help.
Gabriel: you said it right. "Living" is the key word in your sentence. Be strong, continue to just live! You are winning!
When I read the bible out loud for a while before bedtime, I went to bed with no neck pain that night. So now I really try to do that every day or night. I hope it helps you too, please do try it.
I was diagnosed in 2000 and I'm still kicking but not very high I am 63 use a walker on oxygen 24_7 and many many more health issues very prone to pneumonia .just eat well and keep moving its no fun but don't give up fight fight fight and believe in the Lord God almighty..
I will describe a treatment method just by listening to the audio notes
The steps ... the treatment will never cost you anything
It just needs to listen sometimes for an hour
First stage - listen to the headphone link to the end while you are sitting on the chair
Don't worry about anything other than listening
The language in the link is not in English but in Arabic
ruclips.net/video/W2ZeFGBnTgw/видео.html
After listening
Did you feel that ??
Nausea?
Crying?
Tears without crying?
Tell me in detail what you felt
I was diagnosed at age 15 and am currently receiving treatment at Children’s Hospital of Philadelphia(CHOP)
I was just diagnosed with PV a few days ago. I’m 60. I’m honestly feeling validated in many ways because I had all these strange symptoms I didn’t understand. I chose to feel grateful this was caught and I can be involved in my treatment and hopefully live a long life. My mom died of Leukemia & when I first heard I could have a blood disorder I was so afraid. To see that people can live many years with PV with treatment.. again, I feel grateful. I was always very squeamish about blood.. but now, I don’t feel that way.
suzannw sylvia i am 58 n found out i have pv back in march 2022 n my mum also passed of lukemia so yes i felt the same way but understand so much more now. i get a bag of blood every 2 weeks taken out. so far it has brought down my hemoglobin which was 277 n now it is 152 but i still have to get it down way more.
@@sandyb2391 277 hemoglobin??
@@robertwilliams5618 yes the very first time they said it was that high.
Do you have. A certain diet?
@@marieparklaneinstituut3611
I try to eat a lower carb diet.. as per my hematologist to keep my weight down. I gained about 10 pounds after diagnosis. I’ve also been prescribed folic acid and take B12. I was taking iron supplements in the beginning, but no longer have to.
My husband was diagnosed with pv last month. We are struggling to know more about pv. It was heartbreaking to see him everyday fighting with headache and aching all over his body. I wish he never has this cancer.
Just Pray to God and everything will went normal .With Proper Lifestyle as well.
kamarul bariah usoff i so hope your husband is feeling better n has more knowledge of this
During the severity of my PV which I don’t know . They gave me a wrong medicine. Looking back that moment, it was the medicine that continue giving me headache and at the same time joints problem for 9 days.
I was transferred to another hospital and they gave another kind of pain reliever and VOILE I was. Line a MIRACLE headache never again for 10 years now.
Just like that. I really feel so good after a change a bit my dieet and drink more water.
The only thing I need to change is my condition my lifestyle .
I eat less iron foods, I don’t eat canned. And processed food , no more steaks and beef. More green leafy vegetables. And most important The SUN
@@sandyb2391 thank you so much ❤
@@sugarrayleonard7162 thank you so much ❤
Was diagnosed with PV last week. I kept having night sweats, which is why I ended up getting my doctor to do blood work that ended up pointed out my hemoglobin levels were through the roof. Though this was done last year, it took them a long time to diagnose me and it's true. It is very difficult to diagnose, and I have not told many people in my life yet. But, I just want to live my best life. I'm just 25. I want to be like any regular 25 year old.
Which were you symptoms besides night sweats?
Prayers going out to you and 2 all of us.....🙏🙏🙏🙏🙏🙏✌
Yo Alex. Let’s connect on Facebook. My name is Courtney Haughton. Do you have an IG account?
@@courtneyhaughton3293 I'm on nether Facebook or IG. O_O sorry.
Alex Watson Ok bro! My doctor suspected I had polycythemia Vera but my RBC count went down, my JAK2, and erythropoietin were negative.
My goodness ... Literally best video ever. Thank you!
I was diagnosed with this at 15 years old I’m now 30! I lost my insurance at age 18 and didn’t go to the doctor for a long time I think becuz of work and PV my symptoms have gotten worse however I mange it and I’m going back to the doctor in two week now that I have insurance again.
I wish you better health first of all
Can you tell your symptoms since beginning of it
I was diagnosed PV when I was 38 in 2016 and now i'm 46 years old.
𝖸 𝖼𝗎á𝗅 𝖾𝗌 𝗌𝗎 𝖽𝗂𝖾𝗍𝖺
I had my Red Blood cells higher than normal .And I was told that I had this kind of Blood disorder .But with proper Lifestyle and most and foremost, Faith in God.My Red blood Cells went normal .Dont lose hope my friends and always Pray to God.
I’m currently doing tests to see if I have PV or not, I’m 34 and being scared. Your comment calm me down. Thank you
@@lequang8231
How did it go Le !?!
Hope you are okay
@@Booklivre thank you, I’m getting better. I still need a few more tests to find out if I do have PV or not 😉
Pray for my he just 26 years old from three days itching
Its not the years in your life but the life in your years- Good ole Honest Abe
I was diagnosed in my early 30’s, 4 months after I had my 4 pound daughter. I had an undiagnosed blood clot that went undetected. I could have died by the time my PVera was caught. I had 5 pints drawn off of me because my Hemoglobin was so high. I had blood slugging in my brain on the left side. It was a very scary first 6 months. Now I’m 50 and it’s been 18 years since I was diagnosed.
Recently within the last year I’ve had severe GI issues. I dropped 62 pounds due to gastric ulcers. I felt like my body was going to kill me by starving itself. I’m better now than I was but it was a rough past year. I had never had any issues until a year ago. I pray I gain back some weight because being 5’9 & 116 pounds is too thin. I can’t wait to go back to feeling like me. I don’t take life for granted, you can’t. We’re all here for a short amount of time. Live life to the fullest! I’m blessed everyday I wake up. I have a wonderful support system and a beautiful daughter. I’m so thankful my PVera was caught in time because just like this lady I fainted. Dizziness is a huge warning sign in woman. I honestly felt pregnant again. To live a full life it’s so important to be proactive in your treatment. Has Anyone else had gastric ulcers??
Did you consider Ketogenic diet & study about it & also i saw study from ncbi confirming grapefruit is helpful in lowering the hematocrit
Fasting is good btw
@@vipan1231 I’m already thin. A ketogenic diet cannot help my PVERA.
@Exoplanet Searcher 222 -I’m doing okay. I had massive abdominal bypass surgery last year. I have recently found out that the artery to my left kidney is occluded, completely blocked. Currently working with my vascular surgeon to open up this artery to prevent losing my left kidney. I wonder if other PVera patients suffer from Vascular issues?
Two beautiful wise women!!!!! Stay strong
I am now 66 and diagnosed 2014 my concern is i have regular TIA 's I do regular platelet management and so looking for another 20 years, worry not fret not, take your meds and live a day at a time😊
I have known I've had PV since August 2015. I have done pretty well all things considered. I attribute this to mindset. I have good days and not so good days but knowing the difference is key. I run my own semi pro basketball league.I also started a non profit for the purpose of raising funds for furthering research for a PV cure, and of course, hoping to raise awareness of this illness. It's about keeping self out of self. Someone has it worse than I do dealing with this cancer.
Face it, little attention to this point has been given to PV. However I think that is starting to change though.
Meanwhile, stay strong, be blessed, and as I always say, remember to do something nice for somebody.
Hi Mac . What is the name of your non profit?
@@tonistune8 The Titanium Strong Foundation for Polycythemia Research. Be blessed. Sorry for the late response.
@@maclairetxhi
How are you now sir ??
What is the treatment??
Thank you to know about what life im doin right for inspiration i am diagnosed of PV at my age of 46 im so down in nyself, and i dont know what to know now im listening for you to make me alive again in my thoughts and learn how to manage of it.. 🙏 thank you and more power ❤
I just found out I have it. This was a helpful video. Thanks
I wish we had seen all this stuff when my mom was diagnosed. She was also an alcoholic and she heard blood cancer and just kind of never started fighting. She was so scared and we were just told that it's a rare blood disorder and go to the cancer center to figure it out. That was about it and she was terrified. We all were. She may have taken her own life and I won't ever know.
brandi so so sorry this happened
Had a stroke at 32. Diagnosed with PV at 37. Now 38 and getting treatment so hopefully no more problems as it’s already cost me an arm an a leg!
Mblz81 how are you doing with it?
I too had a stroke at 38 due to PV. Luckily I fully recovered prayers for you
@@fredballa5320 how you get fully recovered any suggestions??
Oh my do you have a certain dieet to follow? Can you give me some advice
@@marieparklaneinstituut3611 Only thing I can think of is to maybe avoid things with iron as I decided to try taking some multivitamins thinking it would be a good idea only to be told to stop because they contained iron which was affecting my test results causing me to need venesections but it appears the pegsys injections have things under control as I haven’t had any problems with clots since starting them!
I started feeling funny in my 30s. I went to a military doctor for feeling weird symptoms at age 39. He binned me as a mental case. I went back for various symptoms but the doctors all saw the notes in my health records and quickly diverted every discussion to mental type questions. I was put on Paxil for anxiety against my wishes and tried it but did not diminish my symptoms (numbness and tingling in hands, swelling hands, redness, extreme fatigue, lightheadedness, occasional vertigo). I stopped going to military doctors because I was on the fast track to command and didnt want to be committed to the mental health ward. So I started self medicating with exercises and diet and meditation and prayer and tons of time on Google. The doctors did some perfunctory labs over the years and told me I was fine although my platelets were always slightly high but they said it wasnt a problem (they were around 450,000). When I retired from the military, I demanded a review by a hematologist. I was diagnosed with ET, an MPN that causes over production of platelets. I take a baby aspirin daily and work out a lot. I am feeling the symptoms more and more though. Now the docs say I likely have PV although my red blood cells and hemoglobin and hematocrit are all normal. They say this because my hematocrit is about 47 which is normal but too high for someone with an MPN. So soon they want me to start taking hydroxurea. I likely had this condition for 30 yeas or more with much of that time being undiagnosed and treated as a nutjob by the military despite never missing a day of work except one day in the 80s. I can understand getting a diagnosis wrong but humiliating a person is wrong. The hematology community should ensure medical records are cleansed of mental health notes once a person is diagnosed with an MPN.
My new born baby has been diagnosed with PV, I don't know how things will be in future, after going through the comments I'm more worried. I just hope my baby recovers :(
I am truly sad but I wish you and your baby all the very best . I pray for god to watch over and give you courage and strength ❤
I have polycythemia and my g/dl count goes up to in the 50's and then I get a phlebotomy and some blood gets drained out. Then finally I ate iron absorption foods and that reduced my iron count some, but it took a while, finally I took diluted Oxalic-acid which reduced my iron ten g/dl 's in four days. I sure feel a lot better now and the polycythemia symptoms left, but I still keep it monitored for caution and safety. I don't recommend this treatment to anyone, but I would think that this is an area that needs to be researched by professional medical personnel. Oxalic-acid is an iron scavenger and foods containing Oxalic-acid reduce iron in the blood.
Drink tea it will help.
I watching this to understand the effects of Polycythemia Vera as my boyfriend has it. I want to also spread awareness. Life is so precious and we can take health for granted. This is a great video and has really helped me understand what my boyfriend is going through. Stay well folks
Same here
My daughter doesn’t believe me . Also my husband
I’m sorry for all your lots
Thank goodness Evan krasner of the Robert campus in Berkeley off of Shattuck diagnosed me a couple years ago I've been suffering for a number of years having dizzy spells and blackouts and double vision
I think i might have also.. what was your medicine?
I have the opposite. I have leukemia. I found this video bc my coworker was asking if I had this when I told her I had blood cancer. Our cancer is opposites but the way it made you feel is very similar to how I felt and sometimes still do. Thank you for sharing your story! I deeply appreciate it.
Cell T therapy. Asked my doctor about this info that i cane 2 across. Many blessings to you, hang in there.
We the P-Vera patients must ban together and stay strong and united....
🙏🙏🙏🙏🙏✌
Pv can lead to Leukemia if untreated is what I have read
tina thompson how are you feeling these days in 2020?
PV is leukemia. What type of leukemia you have is based on your bloodwork and different cell counts. There are multiple diseases that fall under the leukemia umbrella. The word leukemia simply means blood cancer but there are a bunch of different types. Pv is simply not a known type by everyone because it is rare and chronic and therefore has much higher success rates.
I had Polycythemia and had to get a phlebotomy about once a month, because my Hemoglobin was around 55 g/dl and my Doctor ordered it.
Finally I wondered about people with Anemia that were short of red-blood-cells analogously like an opposite to Polycythemia!
Then I looked up the foods that people with Anemia do not eat because they are iron blockers.
Many of these foods are called Oxalate's and absorb Iron. So then I started eating these foods (with Oxalate s) abundantly and after a
few weeks I had my Hemoglobin checked by my Doctor and my Hemoglobin was down to 16 g/dl and now over a year later my Hemoglobin is still 16 g/dl. That is a drop of 39 g/dl’s in a very short time and it held good. Sometimes just a simple procedures are workable.
Of course I believe that my mental procedures, meditations & thoughts had something added to this procedure that was synergy related that made it more effective.
Make it clear that I am not prescribing
anything to anyone, but expressing my own thoughts and experience.
However I would recommend that medical personnel investigate this.
Cordially, Robert Shrewsbury
This is wonderful. Can you recommend any link’s or information to read up on this? Thank you. I’m newly diagnosed last week. Thankfully my team of doctors are supportive of all things healthy💜
@@ddsmiles6382 Denise, there are many, many links on RUclips about Polycythemia that you can just put in the work Polycythemia and they will come up.
to my knowledge, I am the only person that ever overcome Polycythemia and it was not, was not with the help of any Doctor, but my own development. I also got over Diabetes by myself and "blew my Doctor away" but he was happy for me. I am a deep researcher in scientific and forbidden knowledge, Kabbalah, Hermetic's and many other things. Eclectic knowledge is my way!
Cordially, Robert
@@robertshrewsbury9344 Thank you! Because I’m so New to this disease I just wasn’t sure where to even begin. Thank you for spending the time to explain some thing’s. It’s a starting point and much appreciated. I was feeling overwhelmed and lost for a moment.
@@ddsmiles6382 You are welcome. I wrote a paper on how I got over my illnesses, but my way was "unorthodox" so to speak.
hi.what medicine are you taking sir?my husband also diagnosed last July 10.
I was diagnosed by my Primary Doctor in December 2017. I found out two weeks ago. I've already been dealing with another chronic illness, a fatal progressive neurological disease, in addition to chronic pain, for ten years. When the PV symptoms started, I knew it was something new. I thought my other disease was progressing. Instead, I have a slow pressing chronic cancer. 💩
What is the neurological disease? My 19 year old son was just referred to neurology and also polycythemia might be diagnosed. We are waiting for results. Thank you.
How do I find a Dr. In my area that specializes in this? Desperately need help. Thanks.
Hi, my husband was diagnosed with Polycythemia Vera a couple years ago and he takes aspirin to thin his blood, every moth now he has taken out his blood. He feels tired, lack of energy, and I was thinking about to change his diet- I am thinking about Paleo or Ketonic diet - would like to know that diet would be healthy /good/ for him to feel better and have more energy. Sorry for my English - it is not my mother language, but I hope you understood my question. Thank you in advance. Halina Opala
Don't give blood .jst take fruit amla
I’m quite shock but still can’t believe that I have PV . I’m still processing. But anyway I’m 56 but I’m happy that I felt still energetic and still working happily.
We are happy to hear that you feel energetic! Thank you for sharing this. ❤
I am 49 years old and found out I have PV right after I had turned 47. I had already had one stroke in Jan 2019, then when I had my 2nd stroke Jan 2020 they told me I suddenly had PV. One of my doctors also found out the one of the veins in my head had also like collapsed, which could have also contributed. So now I have a stint in my brain (like the one they use for hearts), and I have PV, and I've had a total of 3 strokes in a 13 month time period. I don't understand why this happened to me, no one in my family has it, and neither did I until about a year after I had my first stroke. I'm trying to do the best I can. I was going once a month to get my blood tested to watch my Hematocrit levels. And now I go once every 3 months. However, I still have this little voice inside telling me "you're going to die soon" and I hate it. Why can't we get rid of this disease? UGH!
Anyway, thanks for listening. It's good knowing there are more people out there living with this and after so many years. Thanks.
My mom just diagnosed 2 month ago… 😢Just enjoy every moment !!!Good luck ! everything will be good and you will live a long life🙌
I have trombocytemia and I’m in Hydroxyurea 500 mg daily also aspirin 10 mg daily. I had platelets high and after a month got normal. But the doctor told me I need to take it for life since he found I also JAK 2. I am 77 years old. Now I go to Baptist Cancer Center every three month they take my blood and one week later the doctor see me and tell me how I am doing. I which the best of all of you having PV. It could be genetic since my mother died at 90 years old and end up having transfusions once in a while.
My twin sister is Jak2 positive with essential Thrombocytosis diagnosed at 16 and I am Jak2 positive with polycythemia Vera diagnosed at 17
Joesie Bown proves there is a genetic component. I have ET and my aunt has PV.
I have a person in my life whose blood work shows both thrombocytosis and polycythemia. He just had a bone marrow test. Is it possible to have both conditions?
@@diannepeterson6656 Yes, as I have both
Thank you
My older sister and i both have PV jak2 positive.
How’s it going with PV ? I was just diagnosed today? I’m worried
This video had quality music ... :)
What blood type get diagnose with this often
Thank you for the story, I am inspired for this. I have a dad was just diagnosed last week with Pv in his age of 57. He's taking now with Hydroxyurea. But recently he is experiencing severe chill at night, we just have him hot compress. Hope he will be fine.
SimpleLifeInThePhilippines -Is your dad now on Jakafi? Hydrea did nothing for me than cause unnecessary side effects. The FDA requires Hydrea before Jakafi. My World Authority Doctor thinks it’s ridiculous and has tried to get this drug banned .
Ruxolinitib/Jakavi is a much expensive medicine than Hydrea
Hoping and praying that a drug is soon introduced that is affordable
What treatment does he get
I have high red blood cells count, I’m 34 I haven’t seen the doctor yet, blood nurse told me I needed to be retested as my blood count was high.. I’m scared 😩 my symptoms for getting a full blood count test.. pins and needles in feet continuously for 2 years, cold hands and feet forever, now I have sinus problems, 2 month long periods, and the tiredness is something else. I just want to sleep.
Hows it going for you? Hope all is good
What was your homoglinin count
At 34 its highly unlikely 1 in 200000 is the probability under 35,this is a rare and old age disease
@@Cazanu417 I know this comment is old. But PV patients get younger and younger. I have it and I'm only 17.
@@mittag983very rare but not impossible,also since jak2 mutation testing wich is present in almost everyone with this disease,its much easier to get it correctly diagnosed
Hair falls out in clumps, feel hot , bit breathless, itching, dizzy going upstairs, eyes feel like I’m struggling to see properly sometimes,
Weird waking up sat up !
teeth rotting... I wonder what set this off.
I just got results back from cbc I have a high hemoglobin count it’s supposed to be 16.8 but its 17.2 raised by .4 but im still going to a hematologist i see people thrive and live past all expectations so i am not scared whatever challenge good put in front of me i will prosper even with an extra risk but u cant live ur life scared it will stop u from living and don’t listen to google that says u have 7 years to live listen to stories people have lived up to a normal life span with it . It will ein if u let it i will keep u guys updated on my diagnosis and if i test positived but im praying im not
Lil T Several factors can cause a high RBC count including dehydration and high altitudesonlinelibrary.wiley.com/doi/full/10.1002/ajh.24752. Please read the WHO diagnostic guidelines for polycythemia.
Courtney Haughton update i went to a hematologist I got test ran to make sure it wasn’t a liver disease or etc. they did ultrasound and any blood work u can think of my everything came out fine and low epo levels so a week ago i got a jak 2 mutations test and im waiting on results but doctor is sure its PV
Can you give an update? My hemoglobin was 17.1 and my red blood cell at 6.20, with a low iron of 55. I am scheduled to see a hematologist soon but I am just so nervous after reading online.
Brody Uhlenkamp yes i will update you as soon as tomorrow that my Jak 2 mutation test comes back
As a lifetime cancer patient, I attempted various concealing and treatment, but not one of them really worked for a prolonged period of time. This was 4 months ago, now I`m very happy to state that after using this natural herbs treatment solution from dr.hopkinsherbalcure00@gmail.com I haven't seen any manifestation of the blood cancer whatsoever... Am so happy..😊
I just got diagnosed with this and I’m only 16 and an athlete
I'm in the process of being diagnosed and I'm 27 but my blood has been abnormal for a few years.
I have just discovered this condition today, I was looking for a word in the dictionary that had something to do with philosophy and politic, then a word called "Polycythemia" came. I backed out of the original search, then pour my interests into this, since for so many years, I was trying to figure out what happens to blood cells when a person gets bit by a snake? So here I am
I was diagnosed with this 3 years ago and have quite a few symptoms, my doctor said at the time it was only mild and didn't need any treatment, which having looked it up worried me. I have asked twice more since about my condition ( which I think in 3 years is not being a nuisance ) was told quite sharply not to worry about it and shown the door. In the UK we can't just go to another doctor you have to be referred, so I'm stuck, finding it difficult to walk, no energy and can't breathe properly, life is getting hard at 64. Sorry going on a bit just wanted to tell someone.
Please inform us of your progress. Take care sweet heart. We all love you x
Hi Becca
I did put it quite firmly I wasn't happy about not being listened to, he wasn't very nice, let me put it another way, I left the surgery in tears. So I'm stuffed basically.
@@mmmh6406 Morning Jennifer, im honoured you replied to my message. I hope you do not feel so alone any more there are people out here that, even though we have not met you we care for you and we will project positive thoughts out to the universe and they will bounce back and change your life for the better. We belive in you Jennifer. P.s A cup if tea may be a posiblity as i live in newcastle.xxx
UK is low sunlight. 5000IU of Vit D3 and being in the sunlight may help gluten issues which may help this.
I'm sorry to hear this. I live in Scotland and was diagnosed 4 wks ago and in those weeks I have had 5 venesections, an ultrasound and have been nothing but attended to quickly and taken care of, I'm sorry your experience has been so different to mine yet we share the same NHS.... I hope you have had treatment since x
My brother was diagnosed at age 19, after finding out he had a blood clot in his liver (budd-chiari syndrome)
How did they diagnosed clot? What symptoms he had?
If you remove some marrow or spleen would it help?
Im doing my research on this because I believe i have this. I have all of the symptoms and my last blood work showed and increase in my rbc, hemoglobin, and hematocrit count.
rochelle foxx me too
Have appointment with oncologist in January
Fernando Guzman update
kannankrew update
Upstairs
I started with severe headache after drinking. Champagne . I thought heat stroke. Headache didn’t stop until I committed en felt dizzy. I went to my doctor en she gave me a wrong medicine that end up with Ambulance and 9 days in the hospital. What’s funny is …. They gave me paracetamol and some headache pain reliever for 9 days. Misdiagnose for 9 days cannot find what’s wrong with me . They check my whole body and organs and twice fluid in my brain extract. Went to 5 specialist and they never can find my sickness. Until one day a good specialist liver. En kidneys took interest to further the check up and there you go. He sent to hematologist en voile PV
I was diagnosed with polycythemia vera way back in March 1980
Nilo do you have facebook.. i think i may have that desease also.. iwant to know.. what did you do to take care of your health
@@oolayvar5684 Yes I have FB. My FB name is Akosi Josenilo bongcacbulao
@@josenilobulao4506 what was your medicine po sa polycythemia.. did you have plebotomy... drawn bllod from your veins ang process... they said wala raw yan sa pilipinas.. ano mo ginawa ninyo sa sakit ninyo.. pls reply
Me too diagnosed with PV. Kindly suggest
@@oolayvar5684 meron dito. My mom just got one sa Medical City. Kamusta ka?
I have 7300 mononuclear cells in my knee aspiration. Does that mean cancer ? I have several very sore and inflamed joints aswell as back pain and spine pain. And fatigue. I am slightly anemic. My specialist appointment isn't for 6 weeks I'm afraid I have blood cancer
2years ago I was told I tested positive for the Jake2 mutation that causes this cancer. Thank you for your story.
Diagnosis at 2018, see hematologists three days ago got my blood draw and will let me know in one week.
What did u find out?
So much great information, thank you.
Read somewere that if the body is warm, then it is easier to take a shower and not to have so big problems afterward. So drink water and go to sauna before shower. Don't know if this is true or not.
I'm 40 years old and I found out that I have a pv yesterday,
😔
My son turned 30 today. And was diagnosed today. He has a super bad rash all over body, they thought it was an allergic reaction
I was just diagnosed today. Now what ??
My elder sister now effected with high hemoglobin rate. She had heart disease in born. I don't know how long would I continue her treatment. Please suggest me how to continue her unmarried happy life
My daughter has it and I have it so it can be in families
I have it, my aunt had it and my grandfather had it, dying with a stroke.
I just found out this week along that I was on the edge of getting PV . My heart doc told me bout it , had to do lab and shown the cells were high . I had an early lab with done back in March of this year . Family doc said it was a little high but no worry . Now it September and heart doc saying you bout to fall into that group . I do have headaches , getting hot , ringing of the ears , and losing my balance sorta . Is this a cancer or do they label it as that ? Cuz doc didn’t tell me that it was .
Yes I get the same thing… it’s like losing balance or more like my equilibrium or dizziness it really gets intense
I also experience this from last year sept
I have those symptoms also with high red blood cell count.
I guess I was found to have this on Wednesday and I survived 6 open heart surgeries and now this
Im 31. I was diagnosed with pv about a week ago. Im so frustraded and hopeless.
What are your symptoms
same here dude
Wish you the best. I hope you are ok. Don t lose your hope. Life is a little different for you now but I m sure this condition of yours can make you stronger
Why are you frustrated? Don't try to google it. It is not as serious as it looks can be managed easily through a healthy diet and exercise along with proper medical supervision. By the way, I am having PV since I was 23 years old now 28
Be strong best of luck
@@Faizan_Ali1209brother
How are you now ??What is your treatment??
Can you do a blood plasma treatment
I was told that I didn't have P.V. anymore, what can I do to get treatment for this. I know I still have it I need some help.
It can't dissapear, your doctor is a fraud.
I Diagnosis Polycythemia Rubra Vera PRV/PV from ealy 2014 and I know I have PV In 2012...
In May 2015, I have experienced in Transients Ischemic Attack symptoms TIA with MRA scan showing severe stenosis in L proximal M1 it's means Blood clot in brain...
I have to keep Red Blood Count *Hemoglobin* in 14g to 16g with 2 or 3 monthly Venesection...
Apa yg aku Nak share Kat sini, betapa bernilai nya hidup di waktu sihat tapi di saat ini AKU Belajar lebih menghargai segalanya yang ada di SEKELILINGKU... Thank you Allah atas segala pengalaman ni...
have had to get a bag of blood out every 2 weeks cuz high hemoglobin. was scheduled today to get it done again but my hemoglobin is 124 yeh yeh. first time i don't have to go in 4 months
I hope that I don’t have this. :( since 2012 I have had elevated red blood cells and elevated hemoglobin. My cholesterol is high too and I rarely even eat meat. My vision keeps getting worse. I get sick easily. I often have the urge to cough, and I don’t even smoke. Hopefully, it’s something else.
What your doctor said about the condition?
8891 Z My blood test result came back negative. I have been scheduled for Phlebotomy treatment.
@@justinosborne5280 what were you diagnosed with ? I also have high hgb and slightly high red blood cell count my red blood cells are larger then they should be too.
Guys whats more concerning more hemoglobin or more PV (hematocrit)? My RBC count is 5.89 im 25, male
@@vipan1231 Thats not that high rbc of 5.89
I was just diagnosed 1 week ago with PV and I'm wondering is there a group that you can join, or information on Nutrition,excerise, and help just understanding how to live with this.
I was diagnosed 5 months ago, im also looking for a group but cant find any..
I found a group on facebook, Polycythemia Vera support group . they have been really helpful
Hello, I was just diagnosed as well, can we make a chat thing here or maybe do fb or something,
Looking for people like myself to get support in help and knowledge of this crazy disease. Who could figure. 🙁
I was diagnosed 7 months ago feel free to contact me in josefmpn@gmail.com, would love to share and listen to all of you guys, im feeling very alone in this.. im 22 years old
@@y.a100
Tried to email you, says your email is invalid. Sorry. Wanted to try to reach out to you. Stay strong!
I am having trouble with this Pv my pleats are high right now and so tired cant believe the tired on pills
Hello im mary Jane from philippines.. I diagnosed polycythemia vera last week.. And it's really hard to me accept coz many foods that I really love eat but now that I diagnosed with this its really hard and the adjustment so hard.. Especially what should I to eat.. Please help me po.. I don't know what food that I can eat.. Hope you gonna help me
It can be inherited. My grandma had it and my mom has it. Both had the jak2 mutation. And the bone marrow biopsy which confirmed it. My grandma went into leukemia and mom went into myelofibrosis.
I have ET, too many platelets.
Did you go for long distant flights?
Hi All... I am from malaysia, i was diagnosed in 2012 and now i am 33 Years old... In 2014 i had minor stroke on my right side and again in 2018 Disember...
Well how are you doing now
What was your medicine?
Please ask you doctor to follow the WHO guidelines and confirm your diagnosis.
I had a heart attack and I was told I have pv I'm not sure what to think or do I'm so scared about it
Does anyone have any ideas about what I can do for the itching??? It's driving me CRAZY
I've had this for 37 years. In my experience there's not a lot you can do once the itching gets very bad. But, I would suggest that you really start paying attention to your body when the itching starts. Because I have noticed that the itching is a sign that other symptoms will start soon. Itching for me indicates that it's time for me to rest( lay down, get my heat pad and rest) or just sit for a few and de-stress. Also, if I am craving a certain food(foods with garlic and onions, collard greens, kale, bananas, grapes, ect....) when I eat the good foods that my body is craving it helps. Also, keep hydrated to give your blood the best chance of transporting the oxygenated cells your body needs. I would also talk with your doctor about certain pain meds and muscle relaxers if it gets intolerable, because it helps to rest the irritation away.
Use anti itch cream on the areas affected, it helps me.
Contact hematologist he will suggest phlebotomy and will advice you mild doses of Ecoasprin
I avoid hot showers, baths, hot tubs. Cool showers are best..
An old comment but I recommend look into taking Claritin or Benadryl. Both diminish the histamines that cause itching. Unless of course you have some medical reason for not taking them. I take a Claritin on days when I get the itching or feel especially funny and it always helps.
Did you use any birth control Meds.
I may have PV... I go to the Cancer Center on March to find out. I have high B-12, high MCH, High MCV, High WBC and Very high Reticulocytes....
What is your diagnosis
Are you okay now brother?
Can you have PV without symptoms? I have seen my blood results but haven't met with my doctor that wants me to retest tomorrow and schedule an appt stat. The only symptom I have is loss of appetite and feeling full or bloated after a very small meal.
I have over since 2004 with little symptoms. Be sure to take your medicine
Have Pv
My mom died 3 months ago 😪 thats when we realized there is a disease of such now i find out today that i also have it still figuring out how to accept that
The one who sees your heart, holds your heart❤
I’m sorry about your mom. Hope you are getting on well with the treatment
@@lequang8231 i am for my sons, thanks 🙏
@@linetjoy5545 just wanted you to know that I asked the Father of all life to strengthen you as you walk through the life He has given you. We will never understand the why's in life, But we can depend on the Life GIVER to impart His power, strength and comforting presence to hold you in his arms ❤
@@pammiestewart1419 thanks dear, that means alot really appreciate
I have a very confusing experience with polycythemia Vera. When I was 41 I had 2 heart attacks and was told I had polycythemia- then a few short weeks later my blood test showed no sign of the disease. Now at 62 years old- although not diagnosed- I had another
abnormal blood test result - this time instead of having a massive over production of red cells I also had a huge overproduction of white cells in addition. After 4 months of rx vitamin D
and repeat of blood work my results came back normal. Just under the care of primary physician who advised me not to worry about it- that it was just a
fluke thing. Should I see a specialist to get to the bottom of it? By the way when there is an over production of both cells- my blood they say is thick like “slush” as the lab tech describes it.
MelDaybreak Kiss Yes I agree and thank you for the description. That explains a lot. Blessings to you!
my wife was just diagnosed a week ago.....the DR is waiting for more tests to come back.....she has shown a few symptoms and this brought the diagnosis about....have you found any more positive info about lifespan or treatment? thank you so much for sharing your story and i wish you the best!
Ron2u23 I’m not sure about the lifespan because mine was so unexplainable. I think there are people that have a much more involved diagnosis than I had. Mine mysteriously disappeared. But the second time around- the most recent bloodwork/results were off the chart and in nearly every area including my thyroid as well as I was severely deficient in Vitamin D. When we got all the other issues in order- then the polycythemia became completely resolved and again my follow up bloodwork results showed my blood count was normal. But my original symptoms were extreme tiredness, and aching and I was unable to process anything during a simple conversation. Just very strange. I pray that it will resolve on its own regarding your wife. God bless you both.
thank you for your response......still worried but will be ok
We you t you y your email I
I was born with PV and it’s really painful
How old are you now ?
And How are you managing Pv ??
Diagnosed in 2011
Are you okay now brother ?
@@anshumanpati7773 yes, im treated with Besremi and feel fine
How do you manage it ?
I was diagnosed 2017
Wait, so if I have had Polycythemia for the last 3 years, does that mean I have had cancer for 3 years?.
Ive been reading a lot about this. They say it is, but its more of a disorder
My red blood count is pretty high, 51.9. Reasons is I’m taking testosterone shots, when I stop it go to normal, if I get to 52. I do a phlebotomy..
I’m concerned that I may be dealing with this. I’m 15 and have high hematocrit/hemoglobin levels that have been continually raising over the last few months especially. I had a CBC test yesterday and my levels where high, I just came home from the er tonight and they where even higher but the doc didn’t mention anything. He just said everything looks fine
There are only 50 cases reported in the literature under 18 and the prevalence is 1 in 200000 under 35 so its mostly a old age disease thats why he didnt say anything because you most likely you dont have this
@@Cazanu417 where's the reference of that article please
I was diagnosed with H Pylori last three months and the doctor told me I had high haemoglobin.
Will high haemoglobin cause polycythemia vera?
I'm very worried
Me too. High harmoglobin dr told me to donate blood
@@EE-ie9gm oh.
Maybe it's polycythemia vera.
The only treatment is to donate blood
@Agent Applebutt oh really sorry.
Hope you improve on treatment.
@Agent Applebutt that's what I'm also worried about.
I just hope my haemoglobin goes down.
By the way, how did you get diagnosed with polycythemia vera and how do you feel after getting diagnosed?
@Agent Applebutt That's very heartbreaking.
You will be alright.
Believe in yourself.
If the results come out positive, be strong, go through the treatments hoping God will heal you.
I sure will remember you in my prayers.
59 …. Three years going now….. first sign I knew was a heart attack because my red count was 225% above normal
I've just had a 6.9 on my red blood cell count my leg bones get painful and burn like hot poker going in middle my lymph nodes are hard as rocks head aches neck an muscle pain my liver enzymes up kidney aches I'm fatigued tired no strength or energy
Are you okay now brother?
I’ve just got this I don’t know what to do
Yeah the face is red the gum tissue is inflamed the throat tissue and trachea and esophagus is all inflamed sub ceptable to having all sorts of problems I had hernia repair and it took forever to heal the blood was contaminated I had bruising throughout my torso abdomen genitals my body went septic I was taking stuff to loosen my stools because of the hernia surgery and it cause severe shooting pain in my bowels and I had to go to the emergency room and fear that something seriously was wrong