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!!
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
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.
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?
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.
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
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
Kelly, my story is similar in that I also felt poorly for a couple of years before they began to treat me. And, like you, the signs, symptoms, and lab tests were all right there but no one caught it. Strangely enough, I - not my PCP - was the one who realized that I needed treatment. I did some research and eventually figured it out. I asked to see a specialist. The specialist agreed with my self-diagnosis and began treatment.
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.
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.
Hi Cindy1209- So very glad to hear from you- I shall soon be 75!! Where have the years gone? I also had metastatic breast cancer in 2018. I only hand to have radiation for 6 weeks. (also had the whole top of breast removed) I have been very faithful at seeing my DR yearly for health exam- He currently retired- (darn) I have a new Dr- not quite sure about him- Only seen him 3 times- He is the person that realized I had a problem- My red & white blood cell are both elevated - I will be seeing the hematologist 4/14- It will be the same Dr that did my breast cancer treatment. I was very please with the outcome- so I have lots of faith I'm in the right hands. We have been under a lot of stress the last 2 yrs Our son was in a car accident and now is a quadriplegic- We spend all day & nights taking care of him. we do have a helper every morning- showers, dressing, exercises, plus--- I am not complaining, just tired- I hope my energy can build up again- Not use to asking for help- Do not know what will happen to him if I don't survive this-
Getting ahead of our needs- One day at a time- will cross that bridge when it comes. I am just so pleased to have people to correspond with.
/Congratulations for the new baby- How wonderful. We have 4 children- 10 grandchildren, 9 great grandchildren- Busy family--- Love them all.
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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!!
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1 ReactionWould 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
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1 ReactionWelcome @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 ReactionsHi 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.
-
Like -
Helpful -
Hug
3 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?
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.
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Helpful -
Hug
7 ReactionsHello, 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 ReactionKelly, my story is similar in that I also felt poorly for a couple of years before they began to treat me. And, like you, the signs, symptoms, and lab tests were all right there but no one caught it. Strangely enough, I - not my PCP - was the one who realized that I needed treatment. I did some research and eventually figured it out. I asked to see a specialist. The specialist agreed with my self-diagnosis and began treatment.
I feel much better now.
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Helpful -
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3 ReactionsAs a follow up: I will have to undergo a bypass instead since a new stent would only be effective for another year at best.
Because of PV, recommendation is to use an artery rather than a synthetic implant.
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1 ReactionHi Cindy1209- So very glad to hear from you- I shall soon be 75!! Where have the years gone? I also had metastatic breast cancer in 2018. I only hand to have radiation for 6 weeks. (also had the whole top of breast removed) I have been very faithful at seeing my DR yearly for health exam- He currently retired- (darn) I have a new Dr- not quite sure about him- Only seen him 3 times- He is the person that realized I had a problem- My red & white blood cell are both elevated - I will be seeing the hematologist 4/14- It will be the same Dr that did my breast cancer treatment. I was very please with the outcome- so I have lots of faith I'm in the right hands. We have been under a lot of stress the last 2 yrs Our son was in a car accident and now is a quadriplegic- We spend all day & nights taking care of him. we do have a helper every morning- showers, dressing, exercises, plus--- I am not complaining, just tired- I hope my energy can build up again- Not use to asking for help- Do not know what will happen to him if I don't survive this-
Getting ahead of our needs- One day at a time- will cross that bridge when it comes. I am just so pleased to have people to correspond with.
/Congratulations for the new baby- How wonderful. We have 4 children- 10 grandchildren, 9 great grandchildren- Busy family--- Love them all.
-
Like -
Helpful -
Hug
2 Reactions