Being Diagnosed with a RARE Blood Cancer: "My Symptoms Were Easy to Ignore" | Nick's Story 

Polycythemia Vera, Essential Thrombocytosis, and Myelofibrosis '' Being the most serious are a group of Blood malignancies called '' Myeloproliferative Neoplasm'' I had ET, and it transformed into Myelofibrosis. When waiting for my Bone Marrow Transplant, I was lucky enough to also develop Acute Leukemia. It has been 3 years since my Bone marrow Transplant, and still free of cancer.

I was diagnosed with P. Vera back in 2002. It’s now been 23 years and going strong. I only have a pint of blood drawn once a year to 1 1/2 years. Your body adjusts. I’ve had a World Authority doctor at Johns Hopkins who told my hematologist where my numbers needed to be here in Virginia. It is difficult getting the diagnosis but you learn where your blood levels need to be.

Diagnosed 20 years ago when they knew nothing about PV in my area. Re-diagnosed 10 years ago when symptoms couldn’t be ignored any longer. It’s exhausting.

What an excellent speaker and ambassador for the channel. Thank you, Nick, for being so thoughtful and forthcoming.

Thank you for sharing your story. I’m your PV sister and I share all your worries. Stay safe.

Shirley here, just saw your video. Cancer scares me. It why is it always the good people get it. U look healthy and strong u will get through it.

Nick your kind and forthright personal discussion is so much appreciated.

When I was diagnosed my Drs. said, we can keep it at bay, you'll take one pill a day with a baby aspirin and give blood once in a while. I feel fine. I was itching but now it's gone. I'm not tired.

Don't feel bad, I had a GP, she waited so long, I was near death by the time she sent me to oncologist. My sister is RN, read all the blood work to her, she stated my doctor waited so long that I was walking on death's door..... doctor couldn't keep taking blood otherwise she'd be walking on the court system from my family. Luckily my oncologist took my situation much more aggressively than my GP. The family practitioner just kept taking blood test after blood test and couldn't figure things out. Then she made stupid joke that I was her only patient with polycythemia vera. How dare her make jokes after near killing me. 🤔😳😡 You're blessed you have a wonderful wife that had the common sense to set you on the correct path. Blessings to both of us, and others with this crazy illness. 🙏🙏🙏🙏🙏

My sister was just diagnosed. She is currently in a hospital due to her anxiety and depression. I don’t know how to help her but listening to this helped me to understand

I was just diagnosed with Polycythemia Vera in March 2023 (I’m 48 years old), my Dr put me on a daily Aspirin immediately. Mine is not advanced.

Thanks for sharing your story.

Excellent interview. Thank you both.

Describing me exactly. Severe pain. Tired. Itching. Push myself just to keep going.

Keep strong, thank you for sharing!

Thanks for sharing

thank you Nick for helping and sharing. 😊

Wow! What an honest testimony. Thank you and good luck

Thank You, Nick, for telling MY story and yours! The fatigue, is SO deep (Yes, bone deep)! The mental confusion over: is this real, or is this all in my head, is also real! The doubts the denial, the okay, what CAN I do? When family just thinks you are coming up with excuses to not be with them, when it is SO exhausting and just breathing is an effort, they don't GET THAT! My adult son has this, yet we don't have the JAK2 gene, so this is even baffling? Finding out our blood type after our blood donation, he seems to have a doctor who quickly recommended for him to have phlebotomy. Meanwhile, I see an oncologist and it's been wait and see for the last 8 years! Frustrating, that nothing is done, so I walk away, thinking, this was not really real or no big deal? Without being an alarmist and trying NOT to panic, finding a reasonable happy medium? Not treating a patient, is doing harm! Doctor hopping, seems to be my history, until I've realized, I have SEVERAL RARE conditions, none of which ANY doctor is familiar with and the so called experts have ONLY seen 1 other patient in 50 yrs. of their practice offers me NO hope that any of them know ANYTHING! I'm in this alone to figure it out. It's easier to face this alone, as it seems we are figuring it out, as we go. The Journey is before us, to be kind to one another, because one ever realizes what the other is dealing with? Blessings in the Journey!

I was diagnosed with PV four months ago. Thank you for spreading awareness. This was a great interview, good luck to you on your journey!

Great interview! I relate to much of Nick's feelings/experiences. Diagnosed 5 years ago Jak2 positive ago at 49 yo. PV is so much more than just monitoring labs. Fatigue and other symptoms are often invisible, you don't look sick, yet you can feel horrible. I often feel I'm not managing the disease but rather "tolerating" it. Enjoy your videos Stephanie, great job!

Thank you for sharing I’ve just been diagnosed with PV at 69.

Thank you so much for this video. I’ve just had a bone marrow biopsy done, my results should be ready next week. So far everything is pointing to an MPN. Over the past three months symptoms progressed with the worst being indescribable fatigue and blurry vision. I’m hoping for a good outcome of my labs and if it’s an MPN for it to be on the lower part of the spectrum (ET). This video calmed my anxiety a little. Thank you so much.

This is describing me to a T! Including my labs. My dr says it’s caused by yrs of stress and depression . I’m 40. I can barely get out of bed, I was insanely active before.. it’s not a way to live and it’s been yrs. They’re not listening to me

Great interviewer loved how she dived into his responses and wanted more detail out of his answers. Great questions great answers. Thank you both

I have a blood cancer, Multiple Myeloma (diagnosed 7 years), and fatigue is ever-present.

22 years with PV definitely relate to this gotta stay up and busy

My gradfather had this for many many years. Kept it quiet from his kids until he died years later of full blown colon cancer. He would.go in to treatments and blood therapies and would tell the family.he just had check ups. I inky recently found out all thus from my mom because my 21 year old son is showing signs.

Some of the serious illnesses can only be found out by latest stages and scanning on CT, MRI, along with blood tests when symptoms are absent and mild.

it's one of the best cancer to have, long life expency compared to many

🙏 ❤️ 🙏 For You & All

I’ve had symptoms all my life I’m heading to a hematologist with or without a drs backup I’m willing to fight until I get in to see one to get confirmation. Of course no one wants cancer but for me I just want to make sure.

April 1st 2021….. Polycythemia Vera …..my red blood cells 3x normal…. Made my heart stop….. great medical service saved my ass……7 stints and Chemo meds have my levels normal

I was told by my provider 4 months ago that my red blood count was elevated and did a phlebotomy that day and have been doing the blood tests and phlebotomy for the last four months. He has not detailed any future testing or treatment options. I guess I need to know the steps I need to discuss with my doctor at the next appointment. my hemoglobin and hematocrit have not lowered with the 4 phlebotomys of 2 pints each as well as low dose asprin

I foung out I have high red blood cells and the Drs never told me. It makes me mad because I've been having ringin in my ears, dizzyness, headaches hypertension and eye problems.

My Mom is 94 and was just diagnosed with polycythemia. She had a tumor on her ascending colon and her hematologist asked her if she’d ever been told that she has polycythemia. Her father had it and the only treatment at that time was blood letting. The tumor on her colon raised her platelets and hemoglobin to very high levels so she took a drug to thin her blood and lower the levels, hydroxyuria which we found out is a chemotherapy drug. 🤷‍♂️ It worked and she had a successful surgery and is sitting next to me healing. I’m sure she has a good 10 years yet.

FYI: PV is not considered a type of blood cancer in my country The Netherlands. And in other European countries. It is a rare blood disorder and according to our haematologist and neurologist. It borders on blood cancer and can in some cases transform into leukemia, but as long as it doesn’t, no doctor specifies it as cancer. I’m surprised that when ever I look up something an out it, US people refer to it as a blood cancer. My wife was diagnosed with PV in 2004 during pregnancy. Turned our lives upside down. She had a sinus thrombosis with all the bad symptoms. Even an epileptic attack. Two years later another thrombosis in the brain. It’s been under control with the right medication since then.

I have every symptom of this. I guess I'd better find me a good Doctor to check things out.

I have had multiple blood tests over the last 3 years which show my blood is too thick. I am now 63. I had a JAK2 gene mutation test done which was negative so was told I couldn’t have PCV. I have the symptoms so have kept up the daily low dose aspirin my local doctor put me on before the JAK2 test was done. Still have high values on my blood tests.

Great share!! I just had a bone marrow biopsy and I'm awaiting the results. PV is suspected however my JAK 2 is negative for mutation...so we will see. One question....before your diagnosis did you have any issues with your kidneys? Not function..but protein?

still trying to figure out what tests were off. My Red blood cells are high and have been high starting around 2018. High Hematocrit levels and I don't think my PCP ever tested me for low iron, but I have all of these symptoms. I have been dismissed for years when I say something feels off.

Does phelebotomy help raise your epo

Everyone is so young

been dealing with it for years. What about gene editing? I know they have been experimenting with some success with Leukemia

I have PV I am 85

How do I contact this gentleman I recently got my diagnosis in the er and was told this has been lurking for almost 20years unchecked essentially since I was 15 and my health is continually failing

2:36 symptoms list.

Apparently heavy menstruation can mask PV in some women. I find out in 2 days.

My husband had this

💜🙌🏿🙏🏻

I have itching from past 2 months..no medicine is working.. don't know what is this

❤🙏🏽

My mother has Myelofibrosis. It's not nice. I hope you avoid it.