thanks - no bone biopsy set. Hemo wanted to do another draw for another final test. My HCT is 49.somthing. Sounds like my next step is a pulmonology, but I just had a chest CT that was clean. I do use a c-pap and family history of clots. I was not clear why she didn't do a marrow biopsy, because in what I've read, that would be the next step. This is becoming a nightmare that I just can't face in light of all the stressors of life.
I ❤️ NJ! I’m a native New Yorker living in HELL in Houston currently. Many friends and family all over NJ. This is the first summer in over 20 years I haven’t gone back home b/c of trying to get this PV under control. Thinking it is for now so we will head up east for the change of seasons in October. Also doing land every month to check platelets and other counts. After just being diagnosed, two months seems a long stretch for your next CBC so just pay attention to how you’re feeling incase you need to get checked sooner. Enjoy NJ!
Can't ever take jersey out of any jersey girl 😉 or new york!
I could not live anywhere as hot as Texas, NJ is way too hot for me. Fall is a great time to visit, love the colors and it's football (we have 8 seats for Giants, family fun) and then ski season, my absolute fave ❤️ My goal is to be out West for 2-3 weeks and learn to keep the PV in check in higher elevations.
The PA felt she wanted to give me a break but of course I need to go in and get a CBC if I'm not feeling right. I had very specific crashing/stabbing type headaches before they brought my hemoglobin back down to a normal number. They'll be a telling sign I need to go in. I'll see my oncologist this Thurs and if he doesn't agree with waiting that long, I'll certainly go in sooner.
Try and stay cool, I saw something funny on IG where a woman in Texas baked a loaded of bread in her mailbox. Not sure it's really true but funny. Not so much for those dealing with the Temps.
I ❤️ NJ! I’m a native New Yorker living in HELL in Houston currently. Many friends and family all over NJ. This is the first summer in over 20 years I haven’t gone back home b/c of trying to get this PV under control. Thinking it is for now so we will head up east for the change of seasons in October. Also doing land every month to check platelets and other counts. After just being diagnosed, two months seems a long stretch for your next CBC so just pay attention to how you’re feeling incase you need to get checked sooner. Enjoy NJ!
I was told before I had the Jak2 positive that if it were Polycythemia secondary that they recommend a body scan. They said they could begin with an complete abdominal ultrasound but ultimately the scan was needed. Something is causing your numbers to be what they are and you need to figure out what it is now rather than later. It’s hard not to stress but you need answers in order to fix what ever is wrong. Be persistent. You will figure it out and you will be better!
I'm with you 💯 about don't stop searching for what is the cause of secondary Polycythemia, it means there's something going on somewhere in your body that likely isn't good and needs treatment. Whatever it is, it's triggering your body to generate more red blood cells that it doesn't need, a response it thinks is correct to try and fix an issue. Keep getting tested for everything possible until they find the reason. I can only imagine how scary and frustrating it is right now with not knowing.
My first Hema/Onc doc thought mine was secondary at first, he felt my lungs may he compromised and the issue because I get pneumonia quite easily when I get sick. I would get very sick because I'd keep working and never rest, anyone would have eventually gotten very sick. Regardless, more extensive bloodwork showed definitively I have PV, not secondary. I did have a little ray of hope but decided either way, I've got this and will do everything needed to live a long, relatively healthy 😉, trying to get to and find my "new norm", and lots of fun & travel for the rest of my life. I won't lie, just had 2 very bad fatigue days which kinda makes me down but yesterday was good, got a lot done and today is another day.
I see my oncologist next week, have my list of questions and feel good about what he's going to say after getting my numbers this week and the PA letting me go 2 months before my next CBC.
Happy Sunday everyone, very dreary & rainy in NJ and the Canadian fires are making air quality bad (along with all the rain & pollen), I may spend majority of the summer at the lake in the Poconos. I'm lucky to have 3 family members that live there.
Wow, that’s outrageous! I’m glad insurance helps pay for it. I’d have to pay 20% after my 2k ded which of course I will meet every year now with the PV. Ins in this country is a joke but I’m grateful I have it ( I do pay for it though)
Is that medication expensive? Hydroxyurea is working for me so far and is only $8 for 30 pills. I was so grateful it was affordable being I’ll have to meet my deductible every year and more, for labs/phlebotomies/doc appointments. That is a newer medication and Hydroxyurea has been around a very long time.
Heeey! This is the first time I’ve read someone compare the PV symptoms with those of menopause. I am in EXACTLY the same situation. Tingling, headaches, brain fog, flush face, all PV symptoms and all menopause as well. I guess in the end it doesn’t matter which is causing what, as long as we keep our blood counts in check. It really feels like we are being hit with a double play but we move forward. I was diagnosed in January. I’m 56 and began “The change” just over a year ago. I had 6 weekly phlebotomies and then monthly and now I’ve gone 8 weeks. On and off Hydroxyurea. When stopped platelets shot back up so I’m on them for life I’m told. Played with dosage and for 10 weeks I’ve been steady so hoping we got it right. Just 3 X a week which isn’t bad. Also it’s super cheap compared to the other medication that is offered if this one doesn’t work. I wish you luck and look forward to seeing you get this crap under control 😊
You're absolutely right about menopause symptoms and I've got bad allergies and that gives me headaches and major fatigue. It can be very hard to know what's what with the fatigue that's for sure. I'm 60 and done with the changes and the PV has blessed me with bad hot flashes more than the menopause, I've always run hot, have never liked hot weather....love to ski, fall hikes, football etc. This forum has been a lifesaver for me to hear stories, feedback and encouraging & helping others always makes us feel good.
I always say, it could be SO much worse, I'm not in a wheelchair, I'm not getting my breasts cut off, I really feel for many who go through those challenges with such courage & grace.
Life is a gift, I plan to have fun and enjoy many hobbies that bring me joy for a VERY long time!!
My research doesn't give a definitive answer to the secondary. I haven't tested pos for the gene, and I don't have any abnormality enlargements Im told just the elevated blood results and physical symptoms so may have to have the bone biopsy to be certain. I did some research on secondary and all I can find is there may be an underlying condition not yet obvious which doesn't say alot to me. Somethings I guess we just can't be certain about. Hang in there, we are all here for each other.
I was told before I had the Jak2 positive that if it were Polycythemia secondary that they recommend a body scan. They said they could begin with an complete abdominal ultrasound but ultimately the scan was needed. Something is causing your numbers to be what they are and you need to figure out what it is now rather than later. It’s hard not to stress but you need answers in order to fix what ever is wrong. Be persistent. You will figure it out and you will be better!
So my DX has been identified as secondary Polycythemia. I was so damn excited it was not polycythemia vera - but also a bit perplexed about what secondary polycythemia means, prognosis, etc. Hemo took more blood for another test. My HBG and HCT are high with HCT around 50. No real discussion about treatment - just "continue blood checks". Anyone here dealing with the same and provide some insight? It's been a rollercoaster of the "C" word to "nothing". the emotional ups and downs have moved into a major depressive episode. Of, which was in denial - not my first go around with that - and I'm doing my tried and true treatment to get out of that place. But, the questions around the polycythemia loom -
My research doesn't give a definitive answer to the secondary. I haven't tested pos for the gene, and I don't have any abnormality enlargements Im told just the elevated blood results and physical symptoms so may have to have the bone biopsy to be certain. I did some research on secondary and all I can find is there may be an underlying condition not yet obvious which doesn't say alot to me. Somethings I guess we just can't be certain about. Hang in there, we are all here for each other.
So my DX has been identified as secondary Polycythemia. I was so damn excited it was not polycythemia vera - but also a bit perplexed about what secondary polycythemia means, prognosis, etc. Hemo took more blood for another test. My HBG and HCT are high with HCT around 50. No real discussion about treatment - just "continue blood checks". Anyone here dealing with the same and provide some insight? It's been a rollercoaster of the "C" word to "nothing". the emotional ups and downs have moved into a major depressive episode. Of, which was in denial - not my first go around with that - and I'm doing my tried and true treatment to get out of that place. But, the questions around the polycythemia loom -
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thanks - no bone biopsy set. Hemo wanted to do another draw for another final test. My HCT is 49.somthing. Sounds like my next step is a pulmonology, but I just had a chest CT that was clean. I do use a c-pap and family history of clots. I was not clear why she didn't do a marrow biopsy, because in what I've read, that would be the next step. This is becoming a nightmare that I just can't face in light of all the stressors of life.
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1 ReactionCan't ever take jersey out of any jersey girl 😉 or new york!
I could not live anywhere as hot as Texas, NJ is way too hot for me. Fall is a great time to visit, love the colors and it's football (we have 8 seats for Giants, family fun) and then ski season, my absolute fave ❤️ My goal is to be out West for 2-3 weeks and learn to keep the PV in check in higher elevations.
The PA felt she wanted to give me a break but of course I need to go in and get a CBC if I'm not feeling right. I had very specific crashing/stabbing type headaches before they brought my hemoglobin back down to a normal number. They'll be a telling sign I need to go in. I'll see my oncologist this Thurs and if he doesn't agree with waiting that long, I'll certainly go in sooner.
Try and stay cool, I saw something funny on IG where a woman in Texas baked a loaded of bread in her mailbox. Not sure it's really true but funny. Not so much for those dealing with the Temps.
Stay well, stay strong 💪🙏
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1 ReactionI ❤️ NJ! I’m a native New Yorker living in HELL in Houston currently. Many friends and family all over NJ. This is the first summer in over 20 years I haven’t gone back home b/c of trying to get this PV under control. Thinking it is for now so we will head up east for the change of seasons in October. Also doing land every month to check platelets and other counts. After just being diagnosed, two months seems a long stretch for your next CBC so just pay attention to how you’re feeling incase you need to get checked sooner. Enjoy NJ!
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Helpful -
Hug
1 ReactionI'm with you 💯 about don't stop searching for what is the cause of secondary Polycythemia, it means there's something going on somewhere in your body that likely isn't good and needs treatment. Whatever it is, it's triggering your body to generate more red blood cells that it doesn't need, a response it thinks is correct to try and fix an issue. Keep getting tested for everything possible until they find the reason. I can only imagine how scary and frustrating it is right now with not knowing.
My first Hema/Onc doc thought mine was secondary at first, he felt my lungs may he compromised and the issue because I get pneumonia quite easily when I get sick. I would get very sick because I'd keep working and never rest, anyone would have eventually gotten very sick. Regardless, more extensive bloodwork showed definitively I have PV, not secondary. I did have a little ray of hope but decided either way, I've got this and will do everything needed to live a long, relatively healthy 😉, trying to get to and find my "new norm", and lots of fun & travel for the rest of my life. I won't lie, just had 2 very bad fatigue days which kinda makes me down but yesterday was good, got a lot done and today is another day.
I see my oncologist next week, have my list of questions and feel good about what he's going to say after getting my numbers this week and the PA letting me go 2 months before my next CBC.
Happy Sunday everyone, very dreary & rainy in NJ and the Canadian fires are making air quality bad (along with all the rain & pollen), I may spend majority of the summer at the lake in the Poconos. I'm lucky to have 3 family members that live there.
Stay strong 💪 ✨️ 💓
It takes a village!
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4 ReactionsWow, that’s outrageous! I’m glad insurance helps pay for it. I’d have to pay 20% after my 2k ded which of course I will meet every year now with the PV. Ins in this country is a joke but I’m grateful I have it ( I do pay for it though)
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1 ReactionJakafi is $1600 a month I have subsistence otherwise my medicare would not cover it
You're absolutely right about menopause symptoms and I've got bad allergies and that gives me headaches and major fatigue. It can be very hard to know what's what with the fatigue that's for sure. I'm 60 and done with the changes and the PV has blessed me with bad hot flashes more than the menopause, I've always run hot, have never liked hot weather....love to ski, fall hikes, football etc. This forum has been a lifesaver for me to hear stories, feedback and encouraging & helping others always makes us feel good.
I always say, it could be SO much worse, I'm not in a wheelchair, I'm not getting my breasts cut off, I really feel for many who go through those challenges with such courage & grace.
Life is a gift, I plan to have fun and enjoy many hobbies that bring me joy for a VERY long time!!
Stay strong 💪 ✨️ 💓
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Helpful -
Hug
2 ReactionsI was told before I had the Jak2 positive that if it were Polycythemia secondary that they recommend a body scan. They said they could begin with an complete abdominal ultrasound but ultimately the scan was needed. Something is causing your numbers to be what they are and you need to figure out what it is now rather than later. It’s hard not to stress but you need answers in order to fix what ever is wrong. Be persistent. You will figure it out and you will be better!
-
Like -
Helpful -
Hug
2 ReactionsMy research doesn't give a definitive answer to the secondary. I haven't tested pos for the gene, and I don't have any abnormality enlargements Im told just the elevated blood results and physical symptoms so may have to have the bone biopsy to be certain. I did some research on secondary and all I can find is there may be an underlying condition not yet obvious which doesn't say alot to me. Somethings I guess we just can't be certain about. Hang in there, we are all here for each other.
-
Like -
Helpful -
Hug
3 ReactionsSo my DX has been identified as secondary Polycythemia. I was so damn excited it was not polycythemia vera - but also a bit perplexed about what secondary polycythemia means, prognosis, etc. Hemo took more blood for another test. My HBG and HCT are high with HCT around 50. No real discussion about treatment - just "continue blood checks". Anyone here dealing with the same and provide some insight? It's been a rollercoaster of the "C" word to "nothing". the emotional ups and downs have moved into a major depressive episode. Of, which was in denial - not my first go around with that - and I'm doing my tried and true treatment to get out of that place. But, the questions around the polycythemia loom -
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Helpful -
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