My husband has been diagnosed with PV for 24 years. His has been treated with frequent phlebotomies and medication successfully. His oncologist keeps a close watch on his labs and reviews symptoms every 3 months. There are advances in treatment that can prolong life expectancy so I have learned to only review stats written within the last few years.
Recent update: I was diagnosed 3 years ago/ Jak2 mutation. I had already had a small TIA and was diagnosed with CVST. I’ve been fortunate as these last 8 months I’ve had no need for any phlebotomies and I chose not to go on Hydroxyurea, Very happy I didn’t. I was just at my hematologist and sometimes wonder if perhaps I’ve been misdiagnosed or my PV is very mild. I’m on blood thinners and will probably be on them for life, but that’s fine with me. I have blood work done every three months to gauge my hematocrit level, so far it’s good, will see where it is come Feb.
My husband has been diagnosed with PV for 24 years. His has been treated with frequent phlebotomies and medication successfully. His oncologist keeps a close watch on his labs and reviews symptoms every 3 months. There are advances in treatment that can prolong life expectancy so I have learned to only review stats written within the last few years.
This makes me feel some relief! I’m 57 and was diagnosed this past January. Took about 8 months to get the Hydroxyurea dosage right but for now my numbers are good. It’s key to keep up with the labs and check your numbers. So happy for you that he still going all these years later!
<p>I was diagnosed with pv and put on hu plus baby asprin. Had a few phlebotomy done, ok foe a while also has cll which by some miracle is now in remission with no meds. My dr did a pbs and did not tell me results and now has done another. My cbc was very high platelets and high rbc. they had ne do a phletomy and since i did not hear from dr assume all is well. Does any one know if there is any hope for pv?</p>
<p>I was diagnosed with pv and put on hu plus baby asprin. Had a few phlebotomy done, ok foe a while also has cll which by some miracle is now in remission with no meds. My dr did a pbs and did not tell me results and now has done another. My cbc was very high platelets and high rbc. they had ne do a phletomy and since i did not hear from dr assume all is well. Does any one know if there is any hope for pv?</p>
I have had pv for over a year and on hydroxyurea and blood thinners.In the beginning blood drops every week for 3 months and then numbers came down .from 12 hydroxyurea pills a week now down to 3 a week .It takes time for Doc to balance it all out.Be patient and take care.We all go through this and it is a pain.
<p>I was diagnosed with pv and put on hu plus baby asprin. Had a few phlebotomy done, ok foe a while also has cll which by some miracle is now in remission with no meds. My dr did a pbs and did not tell me results and now has done another. My cbc was very high platelets and high rbc. they had ne do a phletomy and since i did not hear from dr assume all is well. Does any one know if there is any hope for pv?</p>
My husband has been diagnosed with PV for 24 years. His has been treated with frequent phlebotomies and medication successfully. His oncologist keeps a close watch on his labs and reviews symptoms every 3 months. There are advances in treatment that can prolong life expectancy so I have learned to only review stats written within the last few years.
<p>I was diagnosed with pv and put on hu plus baby asprin. Had a few phlebotomy done, ok foe a while also has cll which by some miracle is now in remission with no meds. My dr did a pbs and did not tell me results and now has done another. My cbc was very high platelets and high rbc. they had ne do a phletomy and since i did not hear from dr assume all is well. Does any one know if there is any hope for pv?</p>
I couldn't agree more, Lori has and I know will continue to be a huge support to all of us, thank you Lori!
I was a blood donor for YEARS and when I found out I had the good "baby blood" it motivated me to give as much as possible. About 5 times a year, it was easy peasy for me, I'd fill the pint in less 10 mins and had no probs with walking out 10 mins later after a juice. That had kept my PV in check, who knew? Then we head to covid...no blood drains as I called them or now, jokingly, Vampire Visits 😉
Prior to the PV diagnosis, I went through a horrible gastrointestinal few months, lost close to 40 pounds and finally diagnosed myself with the help of my health coach with SIBO - ALL the years of goastro docs telling me I had IBS. Nope, had SIBO which is the #1 cause of IBS and here's the kicker - curable! I was kind of furious, I've had these issues since a kid. One bout of food poisoning can cause it, if you have IBS - research, read and I can give you books and podcasts to follow etc. I educated myself. Apparently gastrointestinal docs don't tell us this because most don't want to do the work involved to fix it, they want a pill. It's not easy but I had NO doubt I was putting in the work. I've healed my gut and can actually enjoy a cup of coffee now and then. Well worth the work to me, not for coffee at all, but for having a normal life.
Sorry for novel, moral of the story is, do your research, get in tune with your body, don't expect doctors to "fix you" but you need their guidance and advice. Push back with questions, ask them and be your own advocate.
I've been dealing with the fatigue and other not great side affects of PV, next BP spiked and it's looking like because I need to be more active....like I used to be and LOVE. I'm on a plan (thanks to my best friend) to build my endurance back up to go out west and ski for 2 weeks this winter. Of course that comes with not skiing like I used to ski and may need to get CBCs done and blood drawn, easy peasy. I will not give up what I love to do if at all possible and continue to live life to its fullest! I'm a young 60, my Dad is 88 and mom 83 (who ski's with me) and they don't run like they used to but kudos to them to always wanting to do the right thing health wise and keep active - body, mind & spirit. That's key.
End of novel....ps, I'm not reviewing so I'm sure tons of typos 🙃
Good morning, Wendy. We are all part of a big family here in Connect, aren’t we? Some days I feel like that elderly auntie who sticks her nose in everyone’s business…just like my favorite Aunt Charlotte. But she was a fount of information, using her experiences and knowledge to help family, friends and community members. I learned a great deal from her and my mom. They were both helpers.
I remember watching an interview with Mr. Rogers.(Mr Roger’s Neighborhood) His mother told him in times of crisis or when you get scary news, 'Look for the helpers’.
So many members join Connect because they might be frightened of the unknown after receiving a diagnosis, they may need a shoulder for support or just to be able to talk with someone who has ‘been there’ and understands what they’re going through.
All the members in Connect can be helpers for each other. By sharing our stories, medical experiences, personal perspectives, coping skills, etc., we all play a vital role in supporting each other. We can offer hope to each other.
So thank you for sharing your story about perseverance in finding an answer to your health issues and what you’re doing to continue pushing forward each day by adapting and rolling with the punches! You never know how many people you may have helped or uplifted today…me being one of them. ☺️
Keep up with your endurance training! I hope you get back out west to ski this winter! I’m blown away that your mom, at 83, still skis!! I see where you get your tenacity!
Ms. Lori, you are such a gem!
I too have had some fear and believe fear is a good thing if it motivates not stagnates. Information is power, there are a lot of different views I think to fit different situations and we are all different and have different needs and treatments. Ms. Lori has been tremendously helpful and level-headed. I'm in a not know stage of PV. We can't find the cause so far, we have checked my stomach organs, and nothing significant. I found labs from 2015 where my RBC and HT were elevated if not high. So I've had it for a few years now. I've been referred to a cardiologist now and also referred to a sleep apnea test. I understand from my doctor that sleep apnea can cause this elevation. I know I have not slept well since my cervical injuries and surgeries in 2003 and 2006. So we are still looking for the cause and again if I understand correctly, if we don't find an obvious cause then I could still have PV and my body or bones or bone marrow could just be screwy. The issue is when you don't have a clear-cut gene-supportive diagnosis or have clear-cut damages. I've got damage but it's age-related or injury-related so I don't have a clear-cut PV result at least yet.
We have tried one phlebotomy to see how I respond to it. I just had that done this past Friday.
We are all different, and this disease is different and has variations and versions, and well not all is known about it either. There isn't necessarily a finite answer or diagnosis or treatment for all. I hope everyone finds that perfect individual treatment that makes them feel better and has a good doctor and support. If I can help anyone to listen....I'm here! slow sometimes but I'm here.
Thank you Ms. Lori for all your level and supportive words and all on this site. It gives me lots of resources and a comfort.
I couldn't agree more, Lori has and I know will continue to be a huge support to all of us, thank you Lori!
I was a blood donor for YEARS and when I found out I had the good "baby blood" it motivated me to give as much as possible. About 5 times a year, it was easy peasy for me, I'd fill the pint in less 10 mins and had no probs with walking out 10 mins later after a juice. That had kept my PV in check, who knew? Then we head to covid...no blood drains as I called them or now, jokingly, Vampire Visits 😉
Prior to the PV diagnosis, I went through a horrible gastrointestinal few months, lost close to 40 pounds and finally diagnosed myself with the help of my health coach with SIBO - ALL the years of goastro docs telling me I had IBS. Nope, had SIBO which is the #1 cause of IBS and here's the kicker - curable! I was kind of furious, I've had these issues since a kid. One bout of food poisoning can cause it, if you have IBS - research, read and I can give you books and podcasts to follow etc. I educated myself. Apparently gastrointestinal docs don't tell us this because most don't want to do the work involved to fix it, they want a pill. It's not easy but I had NO doubt I was putting in the work. I've healed my gut and can actually enjoy a cup of coffee now and then. Well worth the work to me, not for coffee at all, but for having a normal life.
Sorry for novel, moral of the story is, do your research, get in tune with your body, don't expect doctors to "fix you" but you need their guidance and advice. Push back with questions, ask them and be your own advocate.
I've been dealing with the fatigue and other not great side affects of PV, next BP spiked and it's looking like because I need to be more active....like I used to be and LOVE. I'm on a plan (thanks to my best friend) to build my endurance back up to go out west and ski for 2 weeks this winter. Of course that comes with not skiing like I used to ski and may need to get CBCs done and blood drawn, easy peasy. I will not give up what I love to do if at all possible and continue to live life to its fullest! I'm a young 60, my Dad is 88 and mom 83 (who ski's with me) and they don't run like they used to but kudos to them to always wanting to do the right thing health wise and keep active - body, mind & spirit. That's key.
End of novel....ps, I'm not reviewing so I'm sure tons of typos 🙃
Lori, You have a good memory! My medical leash is longer, perhaps because the new doctor is of a different frame of mind, perhaps because my HCT levels have (as of last test) remained in good zone. My platelets swung right back up during this drug free interlude, but, as I have said before, my platelets have been that high for decades, so I am not so prone to freak-out. I consulted with a Mayo doctor, and he and the local oncologist agreed to try me on a much lower dose of Besremi. I was at 300 when the liver enzymes exploded up. I won't go back to that level. I hope the 100 will be more than maintenance, since my platelets still need taming. Perhaps duration will make the difference, time will tell.
So far I've only used my SUP board as a kayak, as all my local water sources had too much movement in them for a beginner. (My 22 year old can stand on it, tho!) I'm learning but being cautious, as I've lost some vigor through this PV ordeal. Don't want to paddle out and struggle to return to shore. It's been lovely out on the water, though, and the inflation process is good for upper body exercise, I warrant!
Be well, stay cool! It's going to be over 100 degrees F here in Oregon for quite a few days. Hopefully you are in a cooler zone.
I’ve had to reduce levels of meds too to keep my temperamental liver happy. Sometimes that reduction is all it takes to treat the disease and keep all the organs chipper. ☺️.
I applaud your efforts on the paddle board! I wouldn’t be too keen on anything less than a lazy lake either. But sitting with feet dangling or paddling about ‘like a kayak’ would be fun and cooling. Oy, I’m not good with high temps anymore and tend to lose my cherub-like demeanor. Thankfully we’re struggling to reach 60 today and a light drizzle in the north woods of Wisconsin. Stay cool!! And best wishes going forward with your treatment! Keep us posted. ☺️
Lori, You have a good memory! My medical leash is longer, perhaps because the new doctor is of a different frame of mind, perhaps because my HCT levels have (as of last test) remained in good zone. My platelets swung right back up during this drug free interlude, but, as I have said before, my platelets have been that high for decades, so I am not so prone to freak-out. I consulted with a Mayo doctor, and he and the local oncologist agreed to try me on a much lower dose of Besremi. I was at 300 when the liver enzymes exploded up. I won't go back to that level. I hope the 100 will be more than maintenance, since my platelets still need taming. Perhaps duration will make the difference, time will tell.
So far I've only used my SUP board as a kayak, as all my local water sources had too much movement in them for a beginner. (My 22 year old can stand on it, tho!) I'm learning but being cautious, as I've lost some vigor through this PV ordeal. Don't want to paddle out and struggle to return to shore. It's been lovely out on the water, though, and the inflation process is good for upper body exercise, I warrant!
Be well, stay cool! It's going to be over 100 degrees F here in Oregon for quite a few days. Hopefully you are in a cooler zone.
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Recent update: I was diagnosed 3 years ago/ Jak2 mutation. I had already had a small TIA and was diagnosed with CVST. I’ve been fortunate as these last 8 months I’ve had no need for any phlebotomies and I chose not to go on Hydroxyurea, Very happy I didn’t. I was just at my hematologist and sometimes wonder if perhaps I’ve been misdiagnosed or my PV is very mild. I’m on blood thinners and will probably be on them for life, but that’s fine with me. I have blood work done every three months to gauge my hematocrit level, so far it’s good, will see where it is come Feb.
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4 ReactionsThis makes me feel some relief! I’m 57 and was diagnosed this past January. Took about 8 months to get the Hydroxyurea dosage right but for now my numbers are good. It’s key to keep up with the labs and check your numbers. So happy for you that he still going all these years later!
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2 ReactionsHi @bharty615, I moved your post to this active discussion about PV.
- Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read through some of the previous posts and connect with other members living with PV.
You may also wish to use the Search function to find more discussions related to PV. For example, see this list:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=+Polycythemia+Vera+&index=discussions
How are you doing with this new diagnosis?
I have had pv for over a year and on hydroxyurea and blood thinners.In the beginning blood drops every week for 3 months and then numbers came down .from 12 hydroxyurea pills a week now down to 3 a week .It takes time for Doc to balance it all out.Be patient and take care.We all go through this and it is a pain.
-
Like -
Helpful -
Hug
4 ReactionsMy husband has been diagnosed with PV for 24 years. His has been treated with frequent phlebotomies and medication successfully. His oncologist keeps a close watch on his labs and reviews symptoms every 3 months. There are advances in treatment that can prolong life expectancy so I have learned to only review stats written within the last few years.
-
Like -
Helpful -
Hug
5 Reactions<p>I was diagnosed with pv and put on hu plus baby asprin. Had a few phlebotomy done, ok foe a while also has cll which by some miracle is now in remission with no meds. My dr did a pbs and did not tell me results and now has done another. My cbc was very high platelets and high rbc. they had ne do a phletomy and since i did not hear from dr assume all is well. Does any one know if there is any hope for pv?</p>
Good morning, Wendy. We are all part of a big family here in Connect, aren’t we? Some days I feel like that elderly auntie who sticks her nose in everyone’s business…just like my favorite Aunt Charlotte. But she was a fount of information, using her experiences and knowledge to help family, friends and community members. I learned a great deal from her and my mom. They were both helpers.
I remember watching an interview with Mr. Rogers.(Mr Roger’s Neighborhood) His mother told him in times of crisis or when you get scary news, 'Look for the helpers’.
So many members join Connect because they might be frightened of the unknown after receiving a diagnosis, they may need a shoulder for support or just to be able to talk with someone who has ‘been there’ and understands what they’re going through.
All the members in Connect can be helpers for each other. By sharing our stories, medical experiences, personal perspectives, coping skills, etc., we all play a vital role in supporting each other. We can offer hope to each other.
So thank you for sharing your story about perseverance in finding an answer to your health issues and what you’re doing to continue pushing forward each day by adapting and rolling with the punches! You never know how many people you may have helped or uplifted today…me being one of them. ☺️
Keep up with your endurance training! I hope you get back out west to ski this winter! I’m blown away that your mom, at 83, still skis!! I see where you get your tenacity!
I couldn't agree more, Lori has and I know will continue to be a huge support to all of us, thank you Lori!
I was a blood donor for YEARS and when I found out I had the good "baby blood" it motivated me to give as much as possible. About 5 times a year, it was easy peasy for me, I'd fill the pint in less 10 mins and had no probs with walking out 10 mins later after a juice. That had kept my PV in check, who knew? Then we head to covid...no blood drains as I called them or now, jokingly, Vampire Visits 😉
Prior to the PV diagnosis, I went through a horrible gastrointestinal few months, lost close to 40 pounds and finally diagnosed myself with the help of my health coach with SIBO - ALL the years of goastro docs telling me I had IBS. Nope, had SIBO which is the #1 cause of IBS and here's the kicker - curable! I was kind of furious, I've had these issues since a kid. One bout of food poisoning can cause it, if you have IBS - research, read and I can give you books and podcasts to follow etc. I educated myself. Apparently gastrointestinal docs don't tell us this because most don't want to do the work involved to fix it, they want a pill. It's not easy but I had NO doubt I was putting in the work. I've healed my gut and can actually enjoy a cup of coffee now and then. Well worth the work to me, not for coffee at all, but for having a normal life.
Sorry for novel, moral of the story is, do your research, get in tune with your body, don't expect doctors to "fix you" but you need their guidance and advice. Push back with questions, ask them and be your own advocate.
I've been dealing with the fatigue and other not great side affects of PV, next BP spiked and it's looking like because I need to be more active....like I used to be and LOVE. I'm on a plan (thanks to my best friend) to build my endurance back up to go out west and ski for 2 weeks this winter. Of course that comes with not skiing like I used to ski and may need to get CBCs done and blood drawn, easy peasy. I will not give up what I love to do if at all possible and continue to live life to its fullest! I'm a young 60, my Dad is 88 and mom 83 (who ski's with me) and they don't run like they used to but kudos to them to always wanting to do the right thing health wise and keep active - body, mind & spirit. That's key.
End of novel....ps, I'm not reviewing so I'm sure tons of typos 🙃
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Helpful -
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1 ReactionI’ve had to reduce levels of meds too to keep my temperamental liver happy. Sometimes that reduction is all it takes to treat the disease and keep all the organs chipper. ☺️.
I applaud your efforts on the paddle board! I wouldn’t be too keen on anything less than a lazy lake either. But sitting with feet dangling or paddling about ‘like a kayak’ would be fun and cooling. Oy, I’m not good with high temps anymore and tend to lose my cherub-like demeanor. Thankfully we’re struggling to reach 60 today and a light drizzle in the north woods of Wisconsin. Stay cool!! And best wishes going forward with your treatment! Keep us posted. ☺️
Lori, You have a good memory! My medical leash is longer, perhaps because the new doctor is of a different frame of mind, perhaps because my HCT levels have (as of last test) remained in good zone. My platelets swung right back up during this drug free interlude, but, as I have said before, my platelets have been that high for decades, so I am not so prone to freak-out. I consulted with a Mayo doctor, and he and the local oncologist agreed to try me on a much lower dose of Besremi. I was at 300 when the liver enzymes exploded up. I won't go back to that level. I hope the 100 will be more than maintenance, since my platelets still need taming. Perhaps duration will make the difference, time will tell.
So far I've only used my SUP board as a kayak, as all my local water sources had too much movement in them for a beginner. (My 22 year old can stand on it, tho!) I'm learning but being cautious, as I've lost some vigor through this PV ordeal. Don't want to paddle out and struggle to return to shore. It's been lovely out on the water, though, and the inflation process is good for upper body exercise, I warrant!
Be well, stay cool! It's going to be over 100 degrees F here in Oregon for quite a few days. Hopefully you are in a cooler zone.
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Like -
Helpful -
Hug
2 Reactions