Good morning! I wish we could have a cup of coffee together. Your post sounds familiar to my experience. I am mom to 5 kids as well. Diagnosed with PV 2 years ago at age 47 after several years of my labs being "off" and having a migraine aura but no headache for several months. I was told it was perimenopause, stress, migraine headache, etc. I also had a horrendous itchy rash on my chin. My dentist suggested I switch toothpaste, and a dermatologist suggested I start a steroid cream to stop the itchiness and rash. None of these remedies worked. Thankfully, my incredibly kind and thorough endocrinologist in Charleston did a little digging and suggested I get tested for the JAK 2 mutation. Blood tests, JAK 2 mutation, and a bone marrow biopsy indicated PV. I went to Mayo in Jacksonville and had a great appointment with a very knowledgeable doctor. He helped put my mind at ease. I then found a doctor closer to home who specializes in blood cancer. I started on hydroxy urea then switched to Jakafi after 6 months. Jakafi was good at lowering night sweats and itchy face, but I found it affected the absorption of my thyroid meds (I do not have a thyroid). I found myself pretty depressed and anxious. I have recently switched back to Hydroxyurea and my thyroid numbers are looking much better. All this to say, I can definitely relate to you. I have learned that not all doctors really know about polycythemia vera. Mayo certainly does, and you can do a search for a mpn specialists to find a doctor who knows the disease and is close to your location. Also, this message board is super helpful, and the mentors are amazing - a real blessing!
I was also diagnosed two years ago at 47. After my daughter was born, I started experiencing headaches with aura's. Always the same. I'd wake up with a faint "tension headache" that lingered. By early afternoon, I would have some type of vision disturbance then I get tingling in my fingers, it would travel up to my face. By the time it hit my lips all the symptoms would disappear. I ended up in the ER when the headaches changed and were so bad that I was throwing up. The ER doctor picked up on my elevated RBC. It took about 4 months but finally was approved for Jak 2 test, which came back positive. So many of my symptoms were passed off as perimenopause. I'm doing well...need to exercise more. I get phlebotomies about every 9 months and take 162mg of aspirin a day. I hear so many on medication, wondering what the determination is for this?!
You are literally 15-20 minutes from me! We could def meet for coffee. Let’s wait until after my app. Which is Tuesday and then I can share the info with you. Email me and I will check later. Nice to almost meet you 🙂
You are literally 15-20 minutes from me! We could def meet for coffee. Let’s wait until after my app. Which is Tuesday and then I can share the info with you. Email me and I will check later. Nice to almost meet you 🙂
Hi @momoffivetoo and @nypara66, I love seeing members connect like this! It is a small world sometimes, isn’t it?
If you want to send a private message you simply click on the avatar (photo) of the person you want to message.
That will open to View Profile
Click on View Profile and the page will open to a blue box with the avatar in the upper left corner. Beneath that you’ll see Send A Private Message with a little blue envelope icon.
Easy peasy.
What?? I am near Cypress TX! And I use Kelsey! I have a great doctor downtown but he is retiring and I’m super sad. I was referred by my nurse that does my phlebotomies to another oncologist/hematologist in the Fort Bend Kelsey. He also goes to other Kelsey locations too. My app is Wednesday, and if I think he’s good I can message you his name and info. I am in Houston by Katy border. Barker Cypress/ FM 529 area. I check on here every morning so we can keep in touch. What a small world’
Thank you for the reply! I am in Cypress, TX if you’re near there. 😉
I have started a list of odd symptoms as well as generalized questions I plan on asking.
My insurance is UHC Kelsey Seybold, so as far as I know, I don’t have the option to go to places like MD Anderson or Mayo, but I’m definitely going to investigate. I don’t think there’s an MPN specialist with Kelsey. 😥
What?? I am near Cypress TX! And I use Kelsey! I have a great doctor downtown but he is retiring and I’m super sad. I was referred by my nurse that does my phlebotomies to another oncologist/hematologist in the Fort Bend Kelsey. He also goes to other Kelsey locations too. My app is Wednesday, and if I think he’s good I can message you his name and info. I am in Houston by Katy border. Barker Cypress/ FM 529 area. I check on here every morning so we can keep in touch. What a small world’
Hello, Ive had PV for almost two years, Im 76 years old. I'm slightly overweight other than that I'm healthy. As the previous person said the first year was the most difficult for me I didn't handle the diagnosis well emotional/psycologially...I became depressed and sedentary...Hydrea dose was changed regularly which also weighed on me even though other than sleep I had none of the negative symtoms of hydrea. After 8 months I decided I was going to quit feeling sorry for myself, eat healthy and get moving...This approach has done wonders for me. Other than taking the hydrox and Doctor visits I don't think about the polycythemia ...I get my care at a major academic cancer institute and see a Nurse practitioner but my attending Oncologist/Hemotologist always sees me after. Some other advice is learn as much as you can about PV and hydrea, You tube has several polycythemia specialists that discuss the disease. Also when you visit your Doctor go with a list of questions because when you with your doctor I would forget questions I had. I'm also thankful for this forum as it helps me understand I'm not alone...Good luck and continue with all the questions you can think of.
It’s a comfort to know you and others had the same initial experience when diagnosed. My GP sent me for the JAK2 testing after he found my high hematocrit level. It was positive. But, he never told me PV was cancer. Neither did the first hematologist I saw! It was only when I googled PV that I learned about it and, like you, I panicked and confronted my GP, who I’ve had for over 45 years! He told me to calm down, told me with proper treatment I had many years left. I was depressed and at first felt hopeless. I had never really been sick before except for severe anemia in my 30-40’s (ironic, right?). I over ate, I mean why not? And, waited. Then I realized I was getting better, slowly, feeling better and the “numbers” were better. And, realized I needed to get over it! It’s under control and I’m down to seeing my MD every six months and I’ve adapted to the symptoms I do have.
Good morning! I wish we could have a cup of coffee together. Your post sounds familiar to my experience. I am mom to 5 kids as well. Diagnosed with PV 2 years ago at age 47 after several years of my labs being "off" and having a migraine aura but no headache for several months. I was told it was perimenopause, stress, migraine headache, etc. I also had a horrendous itchy rash on my chin. My dentist suggested I switch toothpaste, and a dermatologist suggested I start a steroid cream to stop the itchiness and rash. None of these remedies worked. Thankfully, my incredibly kind and thorough endocrinologist in Charleston did a little digging and suggested I get tested for the JAK 2 mutation. Blood tests, JAK 2 mutation, and a bone marrow biopsy indicated PV. I went to Mayo in Jacksonville and had a great appointment with a very knowledgeable doctor. He helped put my mind at ease. I then found a doctor closer to home who specializes in blood cancer. I started on hydroxy urea then switched to Jakafi after 6 months. Jakafi was good at lowering night sweats and itchy face, but I found it affected the absorption of my thyroid meds (I do not have a thyroid). I found myself pretty depressed and anxious. I have recently switched back to Hydroxyurea and my thyroid numbers are looking much better. All this to say, I can definitely relate to you. I have learned that not all doctors really know about polycythemia vera. Mayo certainly does, and you can do a search for a mpn specialists to find a doctor who knows the disease and is close to your location. Also, this message board is super helpful, and the mentors are amazing - a real blessing!
Thank you for the reply! I am in Cypress, TX if you’re near there. 😉
I have started a list of odd symptoms as well as generalized questions I plan on asking.
My insurance is UHC Kelsey Seybold, so as far as I know, I don’t have the option to go to places like MD Anderson or Mayo, but I’m definitely going to investigate. I don’t think there’s an MPN specialist with Kelsey. 😥
Hello, I am new here but wanted to ask a few questions. I am waiting on my hematology appointment in 4 weeks, but I feel pretty confident in a PV diagnosis. I have had high RBC, hemoglobin, and hematocrit for 7 years now. No one has done further follow up on this, I’m always just told to donate blood.
I started to get concerned, and brought it up to my gp at my physical a week and a half ago. I have lost 50 lbs, and do weight lifting and cardio 5 days a week, yet my bp is staying a little high, and my cholesterol went up as well (triglycerides dropped in half). Odd.
Anyway, my bloodwork came back still high, hematocrit is 51.3, hemoglobin is 16.6. Now another value EOS absolute is also high at 8.6%.
Doc did an e-consult with oncology, and they want me to come in. After researching this all on my own, I’m assuming PV. Reached out to my aunt who confirmed my great uncle and second cousin both had PV!
I have itching, toe pain (all toes, both feet), upper left abdomen pain (intermittent), joint aches, occasional headaches, my first bloody nose in 20 years as well.
What sort of questions should I ask at this appointment? Am I jumping the gun here, and being ridiculous, or is PV pretty likely? I am a 47 yo female with systemic lupus as well (diagnosed at 31).
Any help/guidance would be SO appreciated! Thank you!
Good morning! I wish we could have a cup of coffee together. Your post sounds familiar to my experience. I am mom to 5 kids as well. Diagnosed with PV 2 years ago at age 47 after several years of my labs being "off" and having a migraine aura but no headache for several months. I was told it was perimenopause, stress, migraine headache, etc. I also had a horrendous itchy rash on my chin. My dentist suggested I switch toothpaste, and a dermatologist suggested I start a steroid cream to stop the itchiness and rash. None of these remedies worked. Thankfully, my incredibly kind and thorough endocrinologist in Charleston did a little digging and suggested I get tested for the JAK 2 mutation. Blood tests, JAK 2 mutation, and a bone marrow biopsy indicated PV. I went to Mayo in Jacksonville and had a great appointment with a very knowledgeable doctor. He helped put my mind at ease. I then found a doctor closer to home who specializes in blood cancer. I started on hydroxy urea then switched to Jakafi after 6 months. Jakafi was good at lowering night sweats and itchy face, but I found it affected the absorption of my thyroid meds (I do not have a thyroid). I found myself pretty depressed and anxious. I have recently switched back to Hydroxyurea and my thyroid numbers are looking much better. All this to say, I can definitely relate to you. I have learned that not all doctors really know about polycythemia vera. Mayo certainly does, and you can do a search for a mpn specialists to find a doctor who knows the disease and is close to your location. Also, this message board is super helpful, and the mentors are amazing - a real blessing!
I’m dealing with PV for 2 1/2 years now and see my hematologist/oncologist every six months. All my labs and if there’s a dosage change, are dealt with through my My Chart. My Doctor has a great staff and I can always get a nurse on the phone if I have any concerns. The first year is tough mentally and physically. It will get better once your dosage is correct and you get a routine down. For me it was a shocker being just 56 with no other health issues. Also, the expense of all the labs and phlebotomies is very tough even with insurance. I’m grateful that the Hydroxyurea is super cheap and is working for me. It’s been around since the 1960’s and that is good to know as well. Good luck and stay positive!
@nypara66 Thank you very much for responding and for the good wishes. I share your feeling of it being a shocker getting this diagnosis especially with no other health issues present and leading an active healthy lifestyle. Same here.
I hope you check in again. I plan to do the same. Although it is a rare disease, it's very comforting to know there are quite a few of us and we can learn from each other.
Getting ready for my labs draw now.
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I was also diagnosed two years ago at 47. After my daughter was born, I started experiencing headaches with aura's. Always the same. I'd wake up with a faint "tension headache" that lingered. By early afternoon, I would have some type of vision disturbance then I get tingling in my fingers, it would travel up to my face. By the time it hit my lips all the symptoms would disappear. I ended up in the ER when the headaches changed and were so bad that I was throwing up. The ER doctor picked up on my elevated RBC. It took about 4 months but finally was approved for Jak 2 test, which came back positive. So many of my symptoms were passed off as perimenopause. I'm doing well...need to exercise more. I get phlebotomies about every 9 months and take 162mg of aspirin a day. I hear so many on medication, wondering what the determination is for this?!
I will send an email shortly, and that sounds great! Hope your appointment goes well. 😉
Nice to almost meet you as well! 🤣
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1 ReactionYou are literally 15-20 minutes from me! We could def meet for coffee. Let’s wait until after my app. Which is Tuesday and then I can share the info with you. Email me and I will check later. Nice to almost meet you 🙂
-
Like -
Helpful -
Hug
1 ReactionHi @momoffivetoo and @nypara66, I love seeing members connect like this! It is a small world sometimes, isn’t it?
If you want to send a private message you simply click on the avatar (photo) of the person you want to message.
That will open to View Profile
Click on View Profile and the page will open to a blue box with the avatar in the upper left corner. Beneath that you’ll see Send A Private Message with a little blue envelope icon.
Easy peasy.
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Helpful -
Hug
1 ReactionI was SO hoping you were close, that’s why I put my city in there! I’m absolutely up for coffee if you ever have time. 😉
I would definitely appreciate guidance on good Kelsey hematologists please. I am worried about getting a good one.
We are near 290/Huffmeister! Is there a way I can private message you my contact information?
What?? I am near Cypress TX! And I use Kelsey! I have a great doctor downtown but he is retiring and I’m super sad. I was referred by my nurse that does my phlebotomies to another oncologist/hematologist in the Fort Bend Kelsey. He also goes to other Kelsey locations too. My app is Wednesday, and if I think he’s good I can message you his name and info. I am in Houston by Katy border. Barker Cypress/ FM 529 area. I check on here every morning so we can keep in touch. What a small world’
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Like -
Helpful -
Hug
1 ReactionIt’s a comfort to know you and others had the same initial experience when diagnosed. My GP sent me for the JAK2 testing after he found my high hematocrit level. It was positive. But, he never told me PV was cancer. Neither did the first hematologist I saw! It was only when I googled PV that I learned about it and, like you, I panicked and confronted my GP, who I’ve had for over 45 years! He told me to calm down, told me with proper treatment I had many years left. I was depressed and at first felt hopeless. I had never really been sick before except for severe anemia in my 30-40’s (ironic, right?). I over ate, I mean why not? And, waited. Then I realized I was getting better, slowly, feeling better and the “numbers” were better. And, realized I needed to get over it! It’s under control and I’m down to seeing my MD every six months and I’ve adapted to the symptoms I do have.
Thank you for the reply! I am in Cypress, TX if you’re near there. 😉
I have started a list of odd symptoms as well as generalized questions I plan on asking.
My insurance is UHC Kelsey Seybold, so as far as I know, I don’t have the option to go to places like MD Anderson or Mayo, but I’m definitely going to investigate. I don’t think there’s an MPN specialist with Kelsey. 😥
Good morning! I wish we could have a cup of coffee together. Your post sounds familiar to my experience. I am mom to 5 kids as well. Diagnosed with PV 2 years ago at age 47 after several years of my labs being "off" and having a migraine aura but no headache for several months. I was told it was perimenopause, stress, migraine headache, etc. I also had a horrendous itchy rash on my chin. My dentist suggested I switch toothpaste, and a dermatologist suggested I start a steroid cream to stop the itchiness and rash. None of these remedies worked. Thankfully, my incredibly kind and thorough endocrinologist in Charleston did a little digging and suggested I get tested for the JAK 2 mutation. Blood tests, JAK 2 mutation, and a bone marrow biopsy indicated PV. I went to Mayo in Jacksonville and had a great appointment with a very knowledgeable doctor. He helped put my mind at ease. I then found a doctor closer to home who specializes in blood cancer. I started on hydroxy urea then switched to Jakafi after 6 months. Jakafi was good at lowering night sweats and itchy face, but I found it affected the absorption of my thyroid meds (I do not have a thyroid). I found myself pretty depressed and anxious. I have recently switched back to Hydroxyurea and my thyroid numbers are looking much better. All this to say, I can definitely relate to you. I have learned that not all doctors really know about polycythemia vera. Mayo certainly does, and you can do a search for a mpn specialists to find a doctor who knows the disease and is close to your location. Also, this message board is super helpful, and the mentors are amazing - a real blessing!
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1 Reaction@nypara66 Thank you very much for responding and for the good wishes. I share your feeling of it being a shocker getting this diagnosis especially with no other health issues present and leading an active healthy lifestyle. Same here.
I hope you check in again. I plan to do the same. Although it is a rare disease, it's very comforting to know there are quite a few of us and we can learn from each other.
Getting ready for my labs draw now.
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Helpful -
Hug
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