Hello. Please trust what you are feeling. No one else knows you like you!
And, get an order for a blood test to determine if you have the JAK 2. Your GP can order that.
I consider myself lucky that of all the diseases and conditions that could have afflicted me as I got older, I have PV. That may sound odd but, so far, I take two capsules a day of Hydroxyurea and have a phlebotomy every two or three months. I take a low dose aspirin to help prevent blood clots. I get tired and have to pace myself but compared to so many people suffering from catastrophic illness, disease, Im OK. I was scared at the beginning because of the unknown but that’s expected. Google has its place but as I’ve said to a lot of people, a little knowledge is a dangerous thing.
You sound like a smart woman who has gone through a lot and come through it. This is just another challenge and with the right medical team you will get through it just fine.
Cristinia, I also feel lucky that of all cancers I could I acquired PV. My husband died of Pancreatic cancer and endured terrible pain and wasting.
I am newly diagnosed and took my first dose of Hydroxy urea yesterday.My doctor is starting me very slowly 500mg every other day. Except for elevated Hb Hct Plts and +JAK2 I really am symptom free. I just turned 80 and feel optimistic that I will do well.
I wish you all well and will follow along with you . I will also seek your advice as my treatment advances and the need arisrs.
Cristinia, I also feel lucky that of all cancers I could I acquired PV. My husband died of Pancreatic cancer and endured terrible pain and wasting.
I am newly diagnosed and took my first dose of Hydroxy urea yesterday.My doctor is starting me very slowly 500mg every other day. Except for elevated Hb Hct Plts and +JAK2 I really am symptom free. I just turned 80 and feel optimistic that I will do well.
I wish you all well and will follow along with you . I will also seek your advice as my treatment advances and the need arisrs.
Hello. I too was started on 500 mg but when I found another hematologist she immediately increased dosage to 1000mg and it worked. As I am still obese I think the dosage was based on my size.
And, while some may question my attitude you know exactly why I feel the way I do. I am so sorry for your experience and the loss of your husband to that horrible disease.
You will be OK and Im here for you if I can answer any questions and support you.
First, Im sorry for your loss. Second, thank God for your husband.
Now, and I will not pursue this with you again but, it takes NO expertise to order a blood draw and request you be tested for the JAK 2. It’s an ordinary blood draw. The result is either positive or negative and then a referral to specialist.
Maybe it’s the health care system you’re in but otherwise, what I’ve described is all it takes. In fact, I think if you contact an independent lab like Quest, you may be able to order it yourself.
You have pain and you’re scared and if you have PV there’s no reason to wait any longer than you have to begin treatment.
I’m sorry but I’ve heard too many stories that would have ended differently if reasonable action had been taken earlier.
If I have overstepped, I apologize.
I absolutely agree it should be simple to order, but he won’t do it. I tried to call an independent lab, but they want almost $1,000. My copay at the doc for lab work is just $25, so I’ll just have to wait.
I plan to be very proactive in my care, and will ask lots of great questions. Thank you so much!
I tried to get my gp to order it, but he said it’s outside his scope and I have to wait for the hematologist to order it. 😩
I’ll be honest - I have thought the same thing. I’m scared, but I have confidence that the doctors will give me proper care and get me through this! I lost my sister a few years ago to endometrial cancer; she died just 11 months after diagnosis (she was 46). It was a quick and painful death, so if I do have PV, I’m grateful it’s not something much worse. My husband of 30 years has said he’s not going anywhere, and we will get through every stop of this together!
@momoffivetoo
I think the candid conversations here are very helpful. I too am scared, of the effects of the disease, of the meds, how this disease progresses. And you are right, other cancers develop faster.
I'm having my blood checked tomorrow to see what the platelet levels are. Question for those who have been dealing with this for a while, is it normal to be seen by the P.A. for follow ups?
@momoffivetoo
I think the candid conversations here are very helpful. I too am scared, of the effects of the disease, of the meds, how this disease progresses. And you are right, other cancers develop faster.
I'm having my blood checked tomorrow to see what the platelet levels are. Question for those who have been dealing with this for a while, is it normal to be seen by the P.A. for follow ups?
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!
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.
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.
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!
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, 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.
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Cristinia, I also feel lucky that of all cancers I could I acquired PV. My husband died of Pancreatic cancer and endured terrible pain and wasting.
I am newly diagnosed and took my first dose of Hydroxy urea yesterday.My doctor is starting me very slowly 500mg every other day. Except for elevated Hb Hct Plts and +JAK2 I really am symptom free. I just turned 80 and feel optimistic that I will do well.
I wish you all well and will follow along with you . I will also seek your advice as my treatment advances and the need arisrs.
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Helpful -
Hug
2 ReactionsHello. I too was started on 500 mg but when I found another hematologist she immediately increased dosage to 1000mg and it worked. As I am still obese I think the dosage was based on my size.
And, while some may question my attitude you know exactly why I feel the way I do. I am so sorry for your experience and the loss of your husband to that horrible disease.
You will be OK and Im here for you if I can answer any questions and support you.
-
Like -
Helpful -
Hug
2 ReactionsI absolutely agree it should be simple to order, but he won’t do it. I tried to call an independent lab, but they want almost $1,000. My copay at the doc for lab work is just $25, so I’ll just have to wait.
I plan to be very proactive in my care, and will ask lots of great questions. Thank you so much!
-
Like -
Helpful -
Hug
1 Reaction@momoffivetoo
I think the candid conversations here are very helpful. I too am scared, of the effects of the disease, of the meds, how this disease progresses. And you are right, other cancers develop faster.
I'm having my blood checked tomorrow to see what the platelet levels are. Question for those who have been dealing with this for a while, is it normal to be seen by the P.A. for follow ups?
-
Like -
Helpful -
Hug
2 ReactionsI’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!
-
Like -
Helpful -
Hug
3 ReactionsHello, 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.
-
Like -
Helpful -
Hug
2 Reactions@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.
-
Like -
Helpful -
Hug
3 ReactionsGood 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. 😥
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.