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.
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.
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.
Good morning, @csgreetings and welcome to Mayo Connect. So many of us in this support group have been exactly where you are…receiving a new diagnosis and not knowing what to expect. While Polycytmenia Vera (PV) is considered a blood cancer it is generally very slow to develop and as @inevanmac mentioned in her reply to you, it is often managed with medication and sometimes phlebotomies, which removes excess blood.
Here are a couple of websites that give some helpful information about PV, symptoms and treatments.
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’m a 56 yr old female and was just diagnosed with PV in January Jak2 positive. It’s been a shocker and a roller coaster ride thus far. Taking HU and having phlebotomies has brought my numbers down. Still trying to get to some sort of routine, correct dosage and schedule with phlebotomies. Currently getting labs every other week. From what I’ve read, we can live a pretty normal life once it’s under control.
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.
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.
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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
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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!!
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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.
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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.
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1 ReactionThank you all for your comments. A tough or scary road is always easier with friends and mentors. Carol in New Mexico
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3 ReactionsGood morning, @csgreetings and welcome to Mayo Connect. So many of us in this support group have been exactly where you are…receiving a new diagnosis and not knowing what to expect. While Polycytmenia Vera (PV) is considered a blood cancer it is generally very slow to develop and as @inevanmac mentioned in her reply to you, it is often managed with medication and sometimes phlebotomies, which removes excess blood.
Here are a couple of websites that give some helpful information about PV, symptoms and treatments.
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850~~
https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycythemia-vera
The benefit this amazing support group is to be able to connect with others who are sharing a similar experience. In the discussion posted below you’ll be able to meet @doris4benny @pamdg @arlenerun @nypara66 @seamus1010 and others or family members who have PV.
Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Regarding altitude, this is a reply I posted for another member who has PV and concerned about the impact of high altitude. https://connect.mayoclinic.org/comment/737086/
Were you having any symptoms before your diagnosis? Did your hematologist mention if you have a JAK2 mutation which can be a cause for PV?
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1 ReactionI’m a 56 yr old female and was just diagnosed with PV in January Jak2 positive. It’s been a shocker and a roller coaster ride thus far. Taking HU and having phlebotomies has brought my numbers down. Still trying to get to some sort of routine, correct dosage and schedule with phlebotomies. Currently getting labs every other week. From what I’ve read, we can live a pretty normal life once it’s under control.
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5 ReactionsDon’t be, just trust your specialist. It is manageable with medication.
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2 ReactionsStill 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.
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