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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 20 hours ago | Replies (470)Comment receiving replies
Thank you for reaching out Colleen & Christina. I so appreciate it. Honestly, I'm in a bit of terror. Please tell me if I am responding to the right spot or if I should be responding elsewhere to a more specific PV group, or if this is it. New here.
I was just diagnosed on 12/17/25, just two days ago. I turn 70 years old next week. What initially happened is...I go in every year to see my primary care doc and she always orders standard blood tests. My three red cell tests HCG, Hematocrit, and Platelets were high
( Hgb was 16.5; Hematocrit was 50.5; and Platelets was 409) and that was not usual, as we have like 10 years of these tests and you could see it had gone up. All other tests were normal.
When I asked what's this about, she ordered more specific tests and one came back showing a myeloproliferative disorder and a mutation on the JAK2 gene, that I apparently was not born with. Then they wanted me to do a bone marrow biopsy, which I almost didn't do. But after talking to a hematology doc and he explained why I needed it, I agreed.
I have a lot of past medical trauma a a kid (I had polio as a child and many hospitalizations) and so I told the technician who did the test to please work with me and he was just wonderful. The biopsy came back with the diagnosis of Polycythemia Vera, which I had never heard of but I certainly heard it when they said "blood cancer." And I'm worried that I am near dying.
I met with the oncologist on 12/17 and he said that this isn't that kind of cancer. (then why call it cancer?) He said I should still live a normal life expectancy, whatever that is for a 70 year old person. How long can we live with this?
He then said that he suggests I take 81mg of Ecotrin aspirin every day, and Hydroxyurea (HU) of 500 mg, every 4 days. He also mentioned phlebotomy later if needed. He said he felt that the aspirin and the HU would very likely bring the numbers where they need to be. He said HU has sometimes a side effect of upset stomach so not to take it on empty stomach. I specifically asked him if HU was a chemo drug and he said it was not, but later when I read some comments here from others, and researched further, I told him....you told me this wasn't a chemo drug and it looks like IT IS from my research. He said its not the kind of chemo you are thinking of, somewhat like, its not the kind of cancer you're thinking of.
So I've asked him if its a reasonable approach to take one thing at a time to see what works. If I take two things at a time and it works, how will I know which one might have worked on its own.
I am really scared and trying to land and need all the comments that people feel willing to give. I have already started the aspirin and I have ordered the HU but it has not arrived yet and I'm trying to decide how best to proceed.
I really want to have another blood test to see where the extra hydration and aspirin have taken me, before I take any HU, if I do.
Thank you,
LindaKay
Replies to "@colleenyoung @christina3444 Thank you for reaching out Colleen & Christina. I so appreciate it. Honestly, I'm..."
@lindakay55 Hello. Well, I was about 73 when I first got diagnosed and first heard “PV”. And, here I am five years later.
So, try to calm down. It took me awhile to do that but I did. So give yourself a talking to and calm down. I mean, you have survived other things and this will be no different.
HU is a chemo drug. No one told me but when I read on the label that I shouldn’t touch the capsules, duh! I googled it and it is what it is.
I take it at night before bed, as recommended by my hematologist. I take 1000 mg.
Someone in here posted a very technical explanation of why PV is classified as cancer. If I recall correctly it has something to do with research funding (I could be wrong because I have a tendency to forget what doesn’t matter to me or what won’t change things). I’m sure the person who posted it or someone else will see these posts and jump in with an explanation.
I can’t see the future but I’ll bet you’re not going to die anytime soon from PV if you follow your doctor’s recommendations. This assumes you’re careful when walking across the street😉
There are side effects from the HU and you can find them online and by searching on this site.
Because of my age and a multiple of other skeletal problems, it’s hard for me to blame things on the HU. The one thing I do blame on the HU is the exhaustion I felt for a long time. But, for the past several months I have had great bursts of energy and I take advantage of those to get things done.
And, honestly, if that is the worst of it, I can deal with it.
I found a hematologist I liked and, more importantly, who I believe knows what’s she’s doing and who listens to me. So, I listen to her. I rely on her knowledge and experience because this is my first major “illness”. And, listening to her,has worked and I have fewer phlebotomies and fewer office visits.
But, if you trust your doctor’s recommendations and you’ve told him/her that you want to wait before taking the HU, then that’s for you to decide.
As far as life expectancy goes, actuarial will tell you once you read your expected life expectancy you will live a lot longer because you’ve escaped all the diseases that kill people. Since I don’t know if your white or a person of color (makes a difference) as well as all the other things that go into determining life expectancy, I think you should google your info and look it up, if that will make you feel better. You can find Life Expectancy Tables on line.
I do get the feeling you may want to get a second opinion about treatment. Or, maybe just see your doctor for a talk about your dears and how you want to proceed?
My life expectancy makes no difference to me because I’m one of those people who believe when my time is up….its up. Only God knows and happily he is not telling!
Christina
I wish I could sit with you over a cup of coffee and let you talk and give you a hug but this is the best I can do.
@lindakay55 Great narrative of your experience with this condition.
My experience with it was very similar to yours in terms of initial diagnosis and what followed. My diagnosis was four years ago and I started with phlebotomy treatments and various dosage levels of HU. Only time I had a reaction to the med was one time I dropped it in a small cup of water and instead of tossing it, I drank it. Major itching for almost a day following that.
I’m now taking 500mg 4x a week and my numbers have stabilized. Still getting monthly blood tests and visits to the doctor are every 6 months.
Connect
Hi @lindakay55 I’m so happy that you’ve joined Connect. It’s truly an amazing forum with people coming together to share their experiences all variety of issues. It’s especially helpful to be able to speak with someone having a similar diagnosis so that you get some first hand information about what to expect…and to not feel so alone and frightened.
You were recently diagnosied with Polycythemia Vera, which is one blood disorder, from a group of blood conditions referred to as myeloproliferative neoplasms (MPNs). I know…it’s a mouthful! Each of the conditions associated generally feature an overproduction of one of the blood cells…either Red, white or platelets. Or the bone marrow itself can be impacted.
Here’s a good tutorial on MPNs for you:
from Very Well Health
https://www.verywellhealth.com/myeloproliferative-disorders-5209654
In your case your body is now producing an overabundance of red blood cells-Polycythemia Vera. It is often referred to as a blood condition though technically considered a blood cancer, according to my Mayo and local hematologists.
However, as your hematologist mentioned, it’s not the kind of cancer that will likely end your life. In fact, most hematologists, tongue in cheek say, “This is something you’ll likely die with, not from.”
Because your doctor discovered that you have a mutated JAK2 gene, that means you have primary PV, caused by this mutation. It is not something you were born with. It is defect in a gene that was acquired somewhere along your life journey. Many of us, as we age, pick up a mutation or two or three…it’s just a fact of aging. Some cause little issue, others can set the ball rolling such as overproduction of cells.
The mutation on that JAK2 gene causes a glitch in the blood cell assembly line. Basically the ‘off’ switch is bypassed, allowing your red blood cells to over produce!
Remember the old I Love Lucy show with the Chocolate factory…? ☺️
To assist in getting the production under control your doctor has suggested hydroxyurea. HU). This is like a new production manager coming in to help oversee the process to keep the red blood cells at a controlled level.
Your doctor also has you taking a baby aspirin daily to help keep the over abundance of red cells from sticking together and forming unexpected blood clots.
The HU he’s prescribed, taking one pill every 4 days is a very, very low dosage. You most likely won’t even notice you’re taking that as side effects would be minimal. HU, while listed as a chemo therapy is NOT the type of aggressive chemo you’re imagining. This is just a form of classification. So you can relax!!
But to answer your question, the aspirin alone will not do the job!! It will not stop the proliferation of red blood cells. It’s important to take the HU along with it! It is ok to take both medications together as he suggested. You’ll have frequent blood work to check the progress.
I know this reply is quite long but I wanted to help you see that this isn’t the end of your life and you’re not near dying, as you’re concerned. We have so many members here who also have PV, have been on HU or other meds to control this and are living long and pretty healthy lives! So please, take a breathe, exhale and start living your life again!
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