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.
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!
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.
@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.
I too was interested in that comment. So, I googled it and, assuming I understand the basics, PV with no JAK2 means the underlying cause is different (low oxygen levels for example).
Here is the page. I am interested in anything more Jackie has to say about it.
Hello,
I'm 77 years old live in Seabrook, Texas I have PV JAK2 positive diagnosed 3 years ago but sure I had it sooner. I'm a patient at MD ANDERSON, Houston..I'm on hydroxurea and baby asa, the standard treatment. I did have a bone marrow but honestly don't recalled being asked but possibly was. ..I just went along with the treatment. If you are asked to have or want a BM I was nervous but it was not painful as I expected and have not been asked to do a repeat. We have a rare disease which makes this site more valuable. I have a medical background, did a deep dive (using AI) to learn everything I could about PV JAK2, what to do and what not to do always checking with my care team before making any changes. I'm used to my dose of hydrea it doesn't bother me at all anymore. I did snuggle in the beginning..I find few if any physicians in the community outside of my care team have not ever had a patient with PV JAK2 and don't understand it. BTW there is a difference in having just PV or PV JK2 positive im sure everyone is aware just thought I'd mention it.. If anyone would like to communicate or meet for coffee I would love it...Jacqueline Carey...
@jackiecarey
Hi Jackie, please tell me more about the difference between PV and PV-JAK2. I've not heard of that distinction. I've heard of ET JAK2 which I was diagnosed with in 2023 but now told I have PV. They never say PV JAK2.
But obviously, I still have a positive JAK2. I'll mention this to my hema/oncologist during my next appointment.
@nypara66 thanks so much for all the info it seems all the replies I’m getting are from the US so I’m wondering if anyone in Ireland has been diagnosed with PV ?as I’d love to hear from you !!! but the one thing I’ve noticed is that we all seem to be getting the same treatment which is reassuring as I would have thought you might have newer drugs in the US thanks again for all the info it’s reassuring to know I’m not alone in dealing with this
@christina3444 Hello I’m in TX another hot state! Heat is hard on us PV people. I was happy to read your reply stating to hold off on the bone marrow test, of course if she’s comfortable with that. Luckily I’m keeping mine under control with the hydroxyurea and phlebotomies. The key is to get your labs regularly and know your symptoms. I get that lingering headache when my numbers get high. Stay positive!
@nypara66 thanks so much for all the info it seems all the replies I’m getting are from the US so I’m wondering if anyone in Ireland has been diagnosed with PV ?as I’d love to hear from you !!! but the one thing I’ve noticed is that we all seem to be getting the same treatment which is reassuring as I would have thought you might have newer drugs in the US thanks again for all the info it’s reassuring to know I’m not alone in dealing with this
Hello,
I'm 77 years old live in Seabrook, Texas I have PV JAK2 positive diagnosed 3 years ago but sure I had it sooner. I'm a patient at MD ANDERSON, Houston..I'm on hydroxurea and baby asa, the standard treatment. I did have a bone marrow but honestly don't recalled being asked but possibly was. ..I just went along with the treatment. If you are asked to have or want a BM I was nervous but it was not painful as I expected and have not been asked to do a repeat. We have a rare disease which makes this site more valuable. I have a medical background, did a deep dive (using AI) to learn everything I could about PV JAK2, what to do and what not to do always checking with my care team before making any changes. I'm used to my dose of hydrea it doesn't bother me at all anymore. I did snuggle in the beginning..I find few if any physicians in the community outside of my care team have not ever had a patient with PV JAK2 and don't understand it. BTW there is a difference in having just PV or PV JK2 positive im sure everyone is aware just thought I'd mention it.. If anyone would like to communicate or meet for coffee I would love it...Jacqueline Carey...
@jackiecarey hi Jackie I also am 77 and like you have never heard of PV or met anyone with this condition so all the info I’m getting on this site is super helpful, I think I had this for at least 3yrs because since been diagnosed a lot of the symptoms I’d had bone pain ,night sweats ,and itching and have spent a fortune going to see lots of different specialists and it was my local doctor who queried something on my blood tests that ended up giving me my diagnosis, I’m waiting to get the bone marrow biopsy and hopefully it won’t show much scarring I’ve starting 500mg hydrea and aspirin so hopefully I’ll tolerate it well and the next blood tests will be ok , I wish I lived near all you wonderful people so that I could meet up for a coffee and have a chat , I live in Ireland so that’s not possible but we can form our own little online club 😊
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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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7 Reactions@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
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1 Reaction@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.
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3 Reactions@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?
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1 ReactionLooking for support group for Polycythemia Vera as I know nothing about this yet. Need support.
Let me know please.
LindaKay
I too was interested in that comment. So, I googled it and, assuming I understand the basics, PV with no JAK2 means the underlying cause is different (low oxygen levels for example).
Here is the page. I am interested in anything more Jackie has to say about it.
@jackiecarey
Hi Jackie, please tell me more about the difference between PV and PV-JAK2. I've not heard of that distinction. I've heard of ET JAK2 which I was diagnosed with in 2023 but now told I have PV. They never say PV JAK2.
But obviously, I still have a positive JAK2. I'll mention this to my hema/oncologist during my next appointment.
@roughanne Even though it’s such a rare disease, this site has brought us together and I am grateful not to feel so alone also!
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3 Reactions@nypara66 thanks so much for all the info it seems all the replies I’m getting are from the US so I’m wondering if anyone in Ireland has been diagnosed with PV ?as I’d love to hear from you !!! but the one thing I’ve noticed is that we all seem to be getting the same treatment which is reassuring as I would have thought you might have newer drugs in the US thanks again for all the info it’s reassuring to know I’m not alone in dealing with this
-
Like -
Helpful -
Hug
3 Reactions@jackiecarey hi Jackie I also am 77 and like you have never heard of PV or met anyone with this condition so all the info I’m getting on this site is super helpful, I think I had this for at least 3yrs because since been diagnosed a lot of the symptoms I’d had bone pain ,night sweats ,and itching and have spent a fortune going to see lots of different specialists and it was my local doctor who queried something on my blood tests that ended up giving me my diagnosis, I’m waiting to get the bone marrow biopsy and hopefully it won’t show much scarring I’ve starting 500mg hydrea and aspirin so hopefully I’ll tolerate it well and the next blood tests will be ok , I wish I lived near all you wonderful people so that I could meet up for a coffee and have a chat , I live in Ireland so that’s not possible but we can form our own little online club 😊