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’
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’
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.
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 🙂
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?!
Hi as I’ve recently been diagnosed with PV and have the JAK2 mutation I’m reading all your posts with interest but some of the terminology I don’t understand I was only told that my platelets were high at 500 normal being between 150-400 and I was told because of this I was at risk of heart attack and stroke and have been put on aspirin and also hydroxyurea , big words like hematocrit and EPO don’t mean anything to me could someone explain as I’d like to be able to discuss these at my next visit to haematologist also waiting to get bone marrow biopsy to see the extent of damage
@roughanne Hello. I was diagnosed with JAK2/PV almost 6 years ago. I’m 78 soon.
Started on Hydroxyurea (HU) 500mg daily and began seeing hematologist but wasn’t happy with dr. So, I found a wonderful Dr. in Mayo system. She immediately increased HU to 1000 mg daily and began phlebotomies. I was going in for bloodwork every month but now it’s every three months unless I begin to feel unwell. I feel it when my hematocrit reaches 42 (my legs/calfs) and within a day of phlebotomy I feel better.
Because I’m old (it is what it is) and have other issues it’s hard for me to be able to completely differentiate between PV symptoms and my old self.
I can say that at the beginning of this I did experience exhaustion I had never felt. It’s usually better now and I’ve learned to rest more. But, luckily, no headaches or bone pain, or mouth sores and very little itching (and I love a hot shower).
When first diagnosed I scared myself when I googled PV because my GP who sent me for JAK2 Test did not tell me it was cancer and only told me to get to a hematologist.
Please ask your questions because there are a lot of very nice people here, of all ages, and with varying experiences and all helpful
And, if you haven’t already, find a good hematologist who you trust and believe in.
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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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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?
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.
-
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Helpful -
Hug
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 🙂
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1 ReactionI 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 ReactionI 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’ve just been diagnosed with polycythaemia Vera a blood cancer and would love to hear from anyone with this and how it’s been managed
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1 Reaction@roughanne, I moved your post about your new diagnosis of polycythemia vera to this existing discussion of the same name:
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can easily connect with other members like @nypara66
@momoffivetoo @christina3444 and many more.
Use the search function to find other related PV discussions: https://connect.mayoclinic.org/group/blood-cancers-disorders/
@roughanne, what treatment is your doctor recommending for you? This must be all so new to you. Do you have any questions?
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2 ReactionsHi as I’ve recently been diagnosed with PV and have the JAK2 mutation I’m reading all your posts with interest but some of the terminology I don’t understand I was only told that my platelets were high at 500 normal being between 150-400 and I was told because of this I was at risk of heart attack and stroke and have been put on aspirin and also hydroxyurea , big words like hematocrit and EPO don’t mean anything to me could someone explain as I’d like to be able to discuss these at my next visit to haematologist also waiting to get bone marrow biopsy to see the extent of damage
@roughanne Hello. I was diagnosed with JAK2/PV almost 6 years ago. I’m 78 soon.
Started on Hydroxyurea (HU) 500mg daily and began seeing hematologist but wasn’t happy with dr. So, I found a wonderful Dr. in Mayo system. She immediately increased HU to 1000 mg daily and began phlebotomies. I was going in for bloodwork every month but now it’s every three months unless I begin to feel unwell. I feel it when my hematocrit reaches 42 (my legs/calfs) and within a day of phlebotomy I feel better.
Because I’m old (it is what it is) and have other issues it’s hard for me to be able to completely differentiate between PV symptoms and my old self.
I can say that at the beginning of this I did experience exhaustion I had never felt. It’s usually better now and I’ve learned to rest more. But, luckily, no headaches or bone pain, or mouth sores and very little itching (and I love a hot shower).
When first diagnosed I scared myself when I googled PV because my GP who sent me for JAK2 Test did not tell me it was cancer and only told me to get to a hematologist.
Please ask your questions because there are a lot of very nice people here, of all ages, and with varying experiences and all helpful
And, if you haven’t already, find a good hematologist who you trust and believe in.