Polycythemia Vera: Just been diagnosed

@lindakay55

"And I'm worried that I am near dying."

Been there, done that!

I felt doomed for a long, long time after my ET diagnosis.

And I was scared to death to take my first HU capsule (yes, it helps not only with PV, but also with ET, oral cancers and sickle cell anemia. This drug has been used for decades all over the world.)

Two years out, my blood numbers are under control and my energy is back.

lindakay, I'm living proof that there is hope!

Of course you are stressed and sad right now.

Just remember that you're not alone, and that there are better days ahead.

@janemc

Thank you for saying all you have said. I think my HU is arriving today in the mail and I have changed my thinking and I'm going to take it.

Maybe will start taking it in the evening as I have read it makes folks tired. I also want to do a blood test before so I see where I am starting with the numbers. Also, having tingling on bottom of left foot.

Its about nine days out from bone marrow biopsy and I still have sensations from that in my low spine, but not exactly at the puncture spot.

I just want some peace.

@lindakay55

I'm so sorry about the lingering effects of your bone marrow biopsy, and that tingling on your foot.

As to medication, I think it helps to take aspirin and HU with food, or at least with milk. Never on an empty stomach. Oh, and always BUFFERED aspirin!

Experiment a bit! You will find your own optimal schedule for taking the pills.

I track both my HU dosage and my blood work values. It makes me feel a little more in control.

Just looked up Ecotrin. Yay! It's enteric-coated ( = buffered) to protect your stomach lining.

I've never had a bone marrow biopsy, but from this forum I've learned that some people sail right through the procedure, while others may have some lingering discomfort.

I've also never experienced foot tingling, but again -- others here have reported tingling or burning in the feet and hands.

Also frequently reported: Whenever we mention a sensation to our doctors, we're told it has nothing to do with our MPN.

Take such "wisdom" with a grain of salt! I for one have learned much more from others on this forum than from my oncologist.

@colleenyoung @christina3444

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

@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.

@lindakay55 Hello!
I was diagnosed with PV/JAK2 about five years ago. I had my regular soot with my GP for blood work to check my thyroid levels. The nightmare before and morning of appt I had a terrible pain in my knee. They took blood and sent me for a knee X-ray.
My GP, looking quite shocked, told me my hematocrit level was very high and because I had suffered from severe anemia all through my 20-40’s, I asked if it had something to do with that. He explained it was pretty much the opposite. He also told me the pain in my knee was probably from gout because my uric acid level was way too high.
He sent me for a JAK2 blood test and it was positive. Then he told me to find a hematologist asap (I had just moved out of state). It was then I realized it was cancer because, duh, hematologist office was in the “Cancer Center”! My GP of over 40 years hadn’t mentioned it.
I was scared and then I started reading up on PV.
I changed hematologists because I wanted a doctor who listened to my questions and seemed interested in me.
I asked what the prognosis was and calmed down after that discussion. That was over 5 years ago.
I take 1000 mg of Hydroxyurea daily and my benchmark for a phlebotomy I’d my hematocrit at 42 or higher. I started seeing the hematologist every couple of months and having a phlebotomy every couple of months and now I see the doctor every 4 months and phlebotomy about every 4 months. I can feel it in my legs when my hematocrit is 42 or higher, get the blood tested and if I’m right (and I usually am) have the phlebotomy.
In my opinion, there are worse things than phlebotomy and I am horrible to draw blood from. But, it is what it is.
I’m 78. One of the most frustrating things about this, for me, is that they can’t tell me why the hematocrit sometimes stays low or why it will go up. It may have something to do with hydration. The exhaustion I felt (probably from the HU) is not as bad as it was and I’ve learned to rest when I’m tired (I worked for 47 years and I had to learn that).
So, the first thing I’ll say to you is, if you’re scared try to calm down and make a list of questions and ask your doctor for those answers. Hydrate. Exercise and eat healthy.
If you are not comfortable with your doctor or treatment plan, discuss it with your doctor and/or get a second opinion or find another doctor. You are in charge!
I love this forum because PV is rare enough that it’s a good thing to have others going through it and finding some similarities in symptoms and treatment.
So, please ask your questions and share all you want to because no doubt someone here can help.

@lindakay55, welcome. I moved your question to this ongoing discussion group
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

I did this so you can connect with @mw2023 @nypara66 @christina3444 @beebo and so many others who manage polysythemia vera (PV).

You might also be interested in this related discussion:
- How bad is a diagnosis of Polycythemia Vera? What to expect?https://connect.mayoclinic.org/discussion/how-bad-is-a-diagnoses-with-polycythemia-vera/

See all https://connect.mayoclinic.org/group/blood-cancers-disorders/

Linda, I'm sure you have many questions. How was your PV discovered? How are you doing?