First time joining a group here used mayo for research but now ...Im recently placed in a 6 month observation for Polycythemia Vera. We have excluded other factors, I came back negative for the Gene however my hematologist says 20% of results for negative can be false. I've had elevated RBC and hematocrit for several years now. I noticed I didn't feel well most days when I turned 60 and have been talking with doctors ever since about not feeling myself. Recently I was referred to a hematologist/oncologist and she did her process of illumination tests. I have many of the symptoms, and they come and go in the range of severity. I'm taking a slew of supplements to help and some have been good. I am in my 3rd month of the 6 month observation period, just went to the lab, and again both are elevated. I will go back in 3 more months and if still elevated she advised she will confirm the diagnosis and decide the course of treatment. I wonder if the other changes in health Im experiencing is attributed to this...
@chella65 Hello, sorry you have not gotten and definitive answers yet. I can say this. I am a soon to be 57 year old female who was diagnosed in Jan with PV. I just started menopause about a year and a half ago. Sooo many symptoms of this disease are identical to the change of life. Tingling, especially in hands and feet, hotness, flush face, headaches, fatigue, lack of concentration(AKA Brain fog)muscle/body aches, itchy skin, ALL are listed under both PV and Menopause. I know you are a bit older than me but they say this can last for up to 15 years or so? I am finding it difficult to differentiate which is which, but in the end I just have to pay attention and make sure that I get my labs done on schedule. I currently get Phlebotomies about every 6 weeks and take Hydroxyurea 500 mg 3X a week. It took until this month, 6 months later to get to dosage right. I am hoping my numbers stay stable. Hematocrit, hemoglobin, red cells and platelets were all high. Everything is acceptable currently. Fingers crossed for you and I both! Keep us posted.
Meeting this new diagnosis head on is what will give you a sense of power over it. You can be proactive and not feel like a victim to this change in your life. Like you said, PV has probably been coming on for a while and it’s not going to change overnight and take you by surprise. It doesn’t have to define who you are either. But it is with you now and you’ll learn to listen to your body and make some adaptations. I think you mentioned you’re 68? I’m 69 so really, when haven’t we had to continually roll with the punches and make compromises when we’re married or have families. 😅
It’s amazing how strong we can be!! When I was going through my leukemia odyssey one of the little affirmations that came my way was, “You never know how strong you can be until strong is the only option.” We don’t set out with any preconceived notions when we’re faced with a change in health. We don’t know how we’ll react until ‘it happens to us.’ Right? ☺️ So it’s up to us to pull up those bloomers (😅) and take on another challenge.
I am sorry your spouse is less than supportive. You can see you’ve found a new tribe and we’re all here for the long haul. Think of us as sitting around the kitchen table drinking coffee and snacking on cake. Oh which reminds me, I am so weak of willpower today!! I went shopping this morning for fresh veggies and fruit for dinner tonight. We’re having friends over (and we all eat so healthy!) so I wanted to make a veggie tray and a big fruit salad for dessert. Darn if the woman in the bakery wasn’t putting out my favorite peanut cake squares. Somehow the container landed in my cart and now, there’s a piece missing. I quickly stuck it in the freezer so no one notices the gap in the tray. 😂. So much for my 99%of the time eating healthy. Guess I was in the 1% today. 🙃
What a great encouraging note! I needed that and all the 'rah rah's" that are in this. And as far as that gap in the PB cake pan? Believe me,, you've earned it. And I love frozen brownies and things like that. You go,, girl!!
What a great encouraging note! I needed that and all the 'rah rah's" that are in this. And as far as that gap in the PB cake pan? Believe me,, you've earned it. And I love frozen brownies and things like that. You go,, girl!!
hehe Thanks for validating my deservedness of that piece of cake. 😁 I mean, I had no guilt at the time. I didn’t even use a fork because utensils would just slow me down. In my defense, I went shopping on an empty stomach at 8:30…I don’t feel I was in my right mind and can’t help when things fall into my cart. Didn’t want to waste it. There are still 5 pieces remaining. 😂
So glad to read your story. My story will officially start next month. Thankfully it's only taken me about 6 weeks to get in to see a hematologist. I'm a bit nervous - and my spouse is less than supportive. I think that's the hardest thing for me is the feeling I'm fighting this alone. I think this for sure will show a person's strength or not. I've decided to be strong and meet this thing head on. Thanks for your inspiring note. I think my strength comes from this group. Thank you folks! Carol
I hope by finding this site and others here that are going through the same sort of things will give you a better feeling about being alone. I identify with you there, most of my family is passed on already, just have a daughter and granddaughter who I don't like to burden, and Im sorta the matriarch so I try to keep a stiff upper chin. One of my favorite sayings is...nothing in this world can eat you up blood, bones, and all so don't be afraid of anything. We will manage it.
Wishing you a wonderful weekend.
@chella65 Hello, sorry you have not gotten and definitive answers yet. I can say this. I am a soon to be 57 year old female who was diagnosed in Jan with PV. I just started menopause about a year and a half ago. Sooo many symptoms of this disease are identical to the change of life. Tingling, especially in hands and feet, hotness, flush face, headaches, fatigue, lack of concentration(AKA Brain fog)muscle/body aches, itchy skin, ALL are listed under both PV and Menopause. I know you are a bit older than me but they say this can last for up to 15 years or so? I am finding it difficult to differentiate which is which, but in the end I just have to pay attention and make sure that I get my labs done on schedule. I currently get Phlebotomies about every 6 weeks and take Hydroxyurea 500 mg 3X a week. It took until this month, 6 months later to get to dosage right. I am hoping my numbers stay stable. Hematocrit, hemoglobin, red cells and platelets were all high. Everything is acceptable currently. Fingers crossed for you and I both! Keep us posted.
I certainly remember menopause, I am post menopause as mine came on early and did last a while but it varied with intensity so there would be good days and some not quite as good. I totally agree and experienced symptom confusion. Many times the medical field must do a process of elimination. When I get back to my doctor in 3 months, she will review and if my labs are still high she advised she would confirm the diagnosis she suspects now and also will decide what we will do. I was aware of the bloodletting to bring the numbers down and only a couple of medications did I find in my research. I'm trying to eat well, drink plenty of water, take my supplements and move every day. I wear my Fitbit and try to get 10K or more a day which usually involves some type of silver sneakers exercise I find on Utube.
Wishing you a great weekend and thank you for responding.
I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.
I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.
I will be paying close attention to the responses you receive. Sounds like you are in tune with your health very active at 74!
For me, I try to avoid prescriptions on a permanent basis and I've been blessed with doctors who help me stay on that track however, I take one medication for life thyroid and the other is temporary for osteo. I take a slew of supplements and 1 low dose too.
I'm in observation stage but doctor believes she will confirm at the end of this observation period.
I'm 65 and you inspired me.
First time joining a group here used mayo for research but now ...Im recently placed in a 6 month observation for Polycythemia Vera. We have excluded other factors, I came back negative for the Gene however my hematologist says 20% of results for negative can be false. I've had elevated RBC and hematocrit for several years now. I noticed I didn't feel well most days when I turned 60 and have been talking with doctors ever since about not feeling myself. Recently I was referred to a hematologist/oncologist and she did her process of illumination tests. I have many of the symptoms, and they come and go in the range of severity. I'm taking a slew of supplements to help and some have been good. I am in my 3rd month of the 6 month observation period, just went to the lab, and again both are elevated. I will go back in 3 more months and if still elevated she advised she will confirm the diagnosis and decide the course of treatment. I wonder if the other changes in health Im experiencing is attributed to this...
I've got a question, doing some research and found some advice about food. I have been having problems with digestion and bloating but I eat well, mainly salad with a side of protein. I just found recommendations not to eat certain veggies, and green leafy is one of those. Does anyone know or have an accepted menu of food? I'm now wondering if all my healthy eating has been irritating my stomach and that's why I feel uncomfortable after I have dinner and have digestion problems. I really make a great salad with alot of fresh things in it and I eat salad almost every night oops!
I've got a question, doing some research and found some advice about food. I have been having problems with digestion and bloating but I eat well, mainly salad with a side of protein. I just found recommendations not to eat certain veggies, and green leafy is one of those. Does anyone know or have an accepted menu of food? I'm now wondering if all my healthy eating has been irritating my stomach and that's why I feel uncomfortable after I have dinner and have digestion problems. I really make a great salad with alot of fresh things in it and I eat salad almost every night oops!
Do you know if you’re having any swelling of your spleen? That can often be a side effect of PV if you feel full soon after eating, experience bloating or discomfort in your upper right abdomen.
I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.
I will be 69 in July and was diagnosed with PV in April of 2021… Because my HCT was high, I was immediately put on hydroxyurea. I was already taking a baby aspirin and that was also recommended to continue taking.. I did not know what to expect and very concerned about taking a chemo pill.. When you hear the word chemotherapy, you think about potential side effects and how they could impact your life.. I was and still am very active despite having my dose of Hydroxyurea increased to 8500 mg per week.. So far, I have not experienced any known side effects from the HU and have been able to stay very active.. I don’t know how long it will last for me and I know some people have a very hard time tolerating HU.. It seems to be an individual thing… In my case, I have monthly blood tests and the results have been good now for over a year.. I’m not happy about taking these very potent pills, but so far they have been working for me… I hope this helps..
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@chella65 Hello, sorry you have not gotten and definitive answers yet. I can say this. I am a soon to be 57 year old female who was diagnosed in Jan with PV. I just started menopause about a year and a half ago. Sooo many symptoms of this disease are identical to the change of life. Tingling, especially in hands and feet, hotness, flush face, headaches, fatigue, lack of concentration(AKA Brain fog)muscle/body aches, itchy skin, ALL are listed under both PV and Menopause. I know you are a bit older than me but they say this can last for up to 15 years or so? I am finding it difficult to differentiate which is which, but in the end I just have to pay attention and make sure that I get my labs done on schedule. I currently get Phlebotomies about every 6 weeks and take Hydroxyurea 500 mg 3X a week. It took until this month, 6 months later to get to dosage right. I am hoping my numbers stay stable. Hematocrit, hemoglobin, red cells and platelets were all high. Everything is acceptable currently. Fingers crossed for you and I both! Keep us posted.
What a great encouraging note! I needed that and all the 'rah rah's" that are in this. And as far as that gap in the PB cake pan? Believe me,, you've earned it. And I love frozen brownies and things like that. You go,, girl!!
hehe Thanks for validating my deservedness of that piece of cake. 😁 I mean, I had no guilt at the time. I didn’t even use a fork because utensils would just slow me down. In my defense, I went shopping on an empty stomach at 8:30…I don’t feel I was in my right mind and can’t help when things fall into my cart. Didn’t want to waste it. There are still 5 pieces remaining. 😂
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1 ReactionI hope by finding this site and others here that are going through the same sort of things will give you a better feeling about being alone. I identify with you there, most of my family is passed on already, just have a daughter and granddaughter who I don't like to burden, and Im sorta the matriarch so I try to keep a stiff upper chin. One of my favorite sayings is...nothing in this world can eat you up blood, bones, and all so don't be afraid of anything. We will manage it.
Wishing you a wonderful weekend.
I certainly remember menopause, I am post menopause as mine came on early and did last a while but it varied with intensity so there would be good days and some not quite as good. I totally agree and experienced symptom confusion. Many times the medical field must do a process of elimination. When I get back to my doctor in 3 months, she will review and if my labs are still high she advised she would confirm the diagnosis she suspects now and also will decide what we will do. I was aware of the bloodletting to bring the numbers down and only a couple of medications did I find in my research. I'm trying to eat well, drink plenty of water, take my supplements and move every day. I wear my Fitbit and try to get 10K or more a day which usually involves some type of silver sneakers exercise I find on Utube.
Wishing you a great weekend and thank you for responding.
I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.
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1 ReactionI will be paying close attention to the responses you receive. Sounds like you are in tune with your health very active at 74!
For me, I try to avoid prescriptions on a permanent basis and I've been blessed with doctors who help me stay on that track however, I take one medication for life thyroid and the other is temporary for osteo. I take a slew of supplements and 1 low dose too.
I'm in observation stage but doctor believes she will confirm at the end of this observation period.
I'm 65 and you inspired me.
I've got a question, doing some research and found some advice about food. I have been having problems with digestion and bloating but I eat well, mainly salad with a side of protein. I just found recommendations not to eat certain veggies, and green leafy is one of those. Does anyone know or have an accepted menu of food? I'm now wondering if all my healthy eating has been irritating my stomach and that's why I feel uncomfortable after I have dinner and have digestion problems. I really make a great salad with alot of fresh things in it and I eat salad almost every night oops!
Hi @chella65 I found a relevant discussion for you with other members who have PV and diet questions.
Here’s the link: https://connect.mayoclinic.org/discussion/polycythemia-vera-and-nutritional-ketosis/
Do you know if you’re having any swelling of your spleen? That can often be a side effect of PV if you feel full soon after eating, experience bloating or discomfort in your upper right abdomen.
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2 ReactionsI will be 69 in July and was diagnosed with PV in April of 2021… Because my HCT was high, I was immediately put on hydroxyurea. I was already taking a baby aspirin and that was also recommended to continue taking.. I did not know what to expect and very concerned about taking a chemo pill.. When you hear the word chemotherapy, you think about potential side effects and how they could impact your life.. I was and still am very active despite having my dose of Hydroxyurea increased to 8500 mg per week.. So far, I have not experienced any known side effects from the HU and have been able to stay very active.. I don’t know how long it will last for me and I know some people have a very hard time tolerating HU.. It seems to be an individual thing… In my case, I have monthly blood tests and the results have been good now for over a year.. I’m not happy about taking these very potent pills, but so far they have been working for me… I hope this helps..
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Helpful -
Hug
4 Reactions