Hello, new world.
I am 47 and diagnosed yesterday with Polycythemia Vera. Headed to Mayo in April. I have not felt well for a couple of years. Looking back at my lab work, all the symptoms and lab levels were right there, but no one caught it. Two trips to the ER in a week and a half, lab work, and finally my endocrinologist put the pieces together. I am glad to have a diagnosis, but I am stunned to have this at a relatively young age. Any input much appreciated.
Kelly
Well, there are two types of polycythemia: polycythemia vera and just plain old polycythemia. PV is a very VERY slow growth cancer while its Plain Jane cousin polycythemia is non-cancerous. Both cause the bone marrow to produce and pump out too many of one or another blood cells (in my case, my body produces too many red blood cells). This means we tend to have 'thick' blood; our hearts must work harder to push all that blood around our bodies, and the blood has a hard time squeezing through tiny capillaries. And this in turn means that some parts of our body do not always get enough oxygen. The 'thick' viscous blood makes us susceptible to blood clots and heart attacks.
OK. So now that I have scared you (unnecessarily), let me remind you that even if you have the cancerous form, you can live for decades if you receive proper treatment. I suspect that's what your MD means by 'not fatal.' So don't let all of the above get you down. This disorder is easily treated.
Interestingly enough, in the early years, both types of polycythemia generally cause the same annoying symptoms. Itchy skin, brain fog, higher heart rate and blood pressure, and exhaustion are my primary issues. Anyhow, because the symptoms are generally the same for both PV and P, we generally receive the same treatments, at least at first. I receive monthly therapeutic phlebotomy, which is really just like donating blood, and take low-dose 'baby aspirin' twice per day. I do very well on that regimen.
Sooner or later, some people must take a medication to slow down the production of whatever blood cell your bone marrow seems to 'favor.' I have not reached that point, so I will leave others to tell you about that phase.
Try not to worry. Let your MD treat your signs and symptoms, be compliant, and you can be OK.
Thank you for your positive message to Sammy. My name is Cindy, and I was diagnosed with PV in 2021 after bloodwork for a regular PCP appointment. I was diagnosed with metastatic breast cancer in 2019 (second battle with breast cancer first diagnosed in 1999 at the age of 39). I had surgery, high dose chemo and radiation therapy. I kept positive and did really well. So, when I was diagnosed with PV, I was completely devasted. My treatments thus far have been therapeutic phlebotomy and aspirin. I first had them weekly, monthly, every 3 months and now I am at every four months. My hematologist is at MGH Boston and feel like I am in very good hands. This disease is a very lonely one, it is so rare, and I try my best to stay positive and not to worry so much. I have wonderful family and in December became a grandmother. Thank you again for your positive message, you made my day. Best wishes.
My husband was diagnosed with Polycythemia rubra vera about 12 years ago. He has done extremely well managing it with the help of very good haematologists. I'm somewhat concerned with a recent blood letting session where the Dr wasn't in attendance and the two nurses said he was fine to drink alcohol before the procedure. He loves a drink but has been encouraged to reduce alcohol intake - which he has significantly. He has reluctantly increased his water intake. My question is - has there been a change in advice around alcohol and this condition?
Would love to share & learn more about this disease - Was just diagnosed yesterday- Told not to worry it was not fatal?? But, upon reading about it- it sounds very serious. Would love some serious answers- I haven't anyone to share my thoughts with- Thank you for your response- Sarah
Well, there are two types of polycythemia: polycythemia vera and just plain old polycythemia. PV is a very VERY slow growth cancer while its Plain Jane cousin polycythemia is non-cancerous. Both cause the bone marrow to produce and pump out too many of one or another blood cells (in my case, my body produces too many red blood cells). This means we tend to have 'thick' blood; our hearts must work harder to push all that blood around our bodies, and the blood has a hard time squeezing through tiny capillaries. And this in turn means that some parts of our body do not always get enough oxygen. The 'thick' viscous blood makes us susceptible to blood clots and heart attacks.
OK. So now that I have scared you (unnecessarily), let me remind you that even if you have the cancerous form, you can live for decades if you receive proper treatment. I suspect that's what your MD means by 'not fatal.' So don't let all of the above get you down. This disorder is easily treated.
Interestingly enough, in the early years, both types of polycythemia generally cause the same annoying symptoms. Itchy skin, brain fog, higher heart rate and blood pressure, and exhaustion are my primary issues. Anyhow, because the symptoms are generally the same for both PV and P, we generally receive the same treatments, at least at first. I receive monthly therapeutic phlebotomy, which is really just like donating blood, and take low-dose 'baby aspirin' twice per day. I do very well on that regimen.
Sooner or later, some people must take a medication to slow down the production of whatever blood cell your bone marrow seems to 'favor.' I have not reached that point, so I will leave others to tell you about that phase.
Try not to worry. Let your MD treat your signs and symptoms, be compliant, and you can be OK.
Would love to share & learn more about this disease - Was just diagnosed yesterday- Told not to worry it was not fatal?? But, upon reading about it- it sounds very serious. Would love some serious answers- I haven't anyone to share my thoughts with- Thank you for your response- Sarah
Would love to share & learn more about this disease - Was just diagnosed yesterday- Told not to worry it was not fatal?? But, upon reading about it- it sounds very serious. Would love some serious answers- I haven't anyone to share my thoughts with- Thank you for your response- Sarah
Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
Oh thank you Albert, I needed to hear this. Though I don't have concrete answers yet, I have a feeling the same is with me as far as time line. I had all kinds of blood work done last year, and sadly this doctor didn't do a CBC on me at that time. If only!!
Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
I found out 5 months ago and realize I had it for some time.It gets better in time as you get a schedule for hu and blood drops.It is scary at first and such a surprise but this site has given me much info and support.Hope you all have a good day.
I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).
Hello, I read you do your phlebotomies about once a month? Are you taking Hydroxyurea also? I currently am and it does lower my platelets substantially. I also noticed that after a phlebotomy, my platelets seem to drop about 100 pts? My doctor has the same expectations, Hematocrit at 45 and platelets below 600. I’m newly diagnosed and they are still trying to figure out dosage etc.
Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
An unexpected complication has occurred in my situation.
I developed peripheral artery disease which led to a blocked femoral artery. To correct that, I had an angioplasty and a stent about two years ago. Subsequently, I was diagnosed with PV. Recently, the stent found to be occluded and will need to be replaced very soon. The occlusion is most likely due to the excess RB cells and platelets.
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Hello, new world.
I am 47 and diagnosed yesterday with Polycythemia Vera. Headed to Mayo in April. I have not felt well for a couple of years. Looking back at my lab work, all the symptoms and lab levels were right there, but no one caught it. Two trips to the ER in a week and a half, lab work, and finally my endocrinologist put the pieces together. I am glad to have a diagnosis, but I am stunned to have this at a relatively young age. Any input much appreciated.
Kelly
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Like -
Helpful -
Hug
1 ReactionThank you for your positive message to Sammy. My name is Cindy, and I was diagnosed with PV in 2021 after bloodwork for a regular PCP appointment. I was diagnosed with metastatic breast cancer in 2019 (second battle with breast cancer first diagnosed in 1999 at the age of 39). I had surgery, high dose chemo and radiation therapy. I kept positive and did really well. So, when I was diagnosed with PV, I was completely devasted. My treatments thus far have been therapeutic phlebotomy and aspirin. I first had them weekly, monthly, every 3 months and now I am at every four months. My hematologist is at MGH Boston and feel like I am in very good hands. This disease is a very lonely one, it is so rare, and I try my best to stay positive and not to worry so much. I have wonderful family and in December became a grandmother. Thank you again for your positive message, you made my day. Best wishes.
-
Like -
Helpful -
Hug
7 ReactionsMy husband was diagnosed with Polycythemia rubra vera about 12 years ago. He has done extremely well managing it with the help of very good haematologists. I'm somewhat concerned with a recent blood letting session where the Dr wasn't in attendance and the two nurses said he was fine to drink alcohol before the procedure. He loves a drink but has been encouraged to reduce alcohol intake - which he has significantly. He has reluctantly increased his water intake. My question is - has there been a change in advice around alcohol and this condition?
Hi Sammy,
Well, there are two types of polycythemia: polycythemia vera and just plain old polycythemia. PV is a very VERY slow growth cancer while its Plain Jane cousin polycythemia is non-cancerous. Both cause the bone marrow to produce and pump out too many of one or another blood cells (in my case, my body produces too many red blood cells). This means we tend to have 'thick' blood; our hearts must work harder to push all that blood around our bodies, and the blood has a hard time squeezing through tiny capillaries. And this in turn means that some parts of our body do not always get enough oxygen. The 'thick' viscous blood makes us susceptible to blood clots and heart attacks.
OK. So now that I have scared you (unnecessarily), let me remind you that even if you have the cancerous form, you can live for decades if you receive proper treatment. I suspect that's what your MD means by 'not fatal.' So don't let all of the above get you down. This disorder is easily treated.
Interestingly enough, in the early years, both types of polycythemia generally cause the same annoying symptoms. Itchy skin, brain fog, higher heart rate and blood pressure, and exhaustion are my primary issues. Anyhow, because the symptoms are generally the same for both PV and P, we generally receive the same treatments, at least at first. I receive monthly therapeutic phlebotomy, which is really just like donating blood, and take low-dose 'baby aspirin' twice per day. I do very well on that regimen.
Sooner or later, some people must take a medication to slow down the production of whatever blood cell your bone marrow seems to 'favor.' I have not reached that point, so I will leave others to tell you about that phase.
Try not to worry. Let your MD treat your signs and symptoms, be compliant, and you can be OK.
-
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Helpful -
Hug
3 ReactionsWelcome @sammy123 (Sarah). I popped your message over to this existing discussion:
- Polycythemia Vera: Just been diagnosed: https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can catch up on the posts from other members new to polycythemia vera and the helpful PV-ers that share their experiences like @albertedward @nypara66 @csgreetings @doris4benny @pamdg @rabab101 @inevanmac @seamus1010 @chadknudson @mordonmordon @mongoglb39 @vmg44 @buckaroobanzai and many more.
Sammy, I'm sure you have many questions. What would you like to ask fellow members living with PV?
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4 ReactionsWould love to share & learn more about this disease - Was just diagnosed yesterday- Told not to worry it was not fatal?? But, upon reading about it- it sounds very serious. Would love some serious answers- I haven't anyone to share my thoughts with- Thank you for your response- Sarah
-
Like -
Helpful -
Hug
1 ReactionOh thank you Albert, I needed to hear this. Though I don't have concrete answers yet, I have a feeling the same is with me as far as time line. I had all kinds of blood work done last year, and sadly this doctor didn't do a CBC on me at that time. If only!!
-
Like -
Helpful -
Hug
1 ReactionI found out 5 months ago and realize I had it for some time.It gets better in time as you get a schedule for hu and blood drops.It is scary at first and such a surprise but this site has given me much info and support.Hope you all have a good day.
-
Like -
Helpful -
Hug
4 ReactionsHello, I read you do your phlebotomies about once a month? Are you taking Hydroxyurea also? I currently am and it does lower my platelets substantially. I also noticed that after a phlebotomy, my platelets seem to drop about 100 pts? My doctor has the same expectations, Hematocrit at 45 and platelets below 600. I’m newly diagnosed and they are still trying to figure out dosage etc.
An unexpected complication has occurred in my situation.
I developed peripheral artery disease which led to a blocked femoral artery. To correct that, I had an angioplasty and a stent about two years ago. Subsequently, I was diagnosed with PV. Recently, the stent found to be occluded and will need to be replaced very soon. The occlusion is most likely due to the excess RB cells and platelets.
-
Like -
Helpful -
Hug
1 Reaction