Polycythemia Vera

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RE: Polycythemia Vera

by jgard967 on Mon Apr 18, 2016 06:12 AM

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and im very sorry everybody about the multiple messages my computer was acting up

RE: Polycythemia Vera

by Lindajoanna on Sun Jul 10, 2016 11:56 PM

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On Jan 12, 2014 4:37 AM janets wrote:

I am a 54 year old depressed woman! I have PV , was diagnosed about 6 years ago, never knew about this, random blood test was very screwy, hence, this led to my diagnosis. I take hydroeria but I am noticing my hair is getting very thin..also, as described by some others, I have no energy, out of breath, etc...I am a jersey girl and when I went to the beach this past summer, trying to walk on the sand was trying! Never before was this an issue....I am always tired...but supposedly I am doing good according to my doctor..second opinion? Please advise!
Hi Janet's I just found this site today. I was dx with pv 4 yrs ago. I have the jak2 mutation. I am a jersey girl also. I am depressed with this whole mess. I have trouble walking I feel unsteady. I am not on Hydroxyurea yet. Don't even know if I want it cause I read the drug can cause leukemia. Just wanted to say hi linda

RE: Polycythemia Vera

by JholanFrancisco on Mon Jul 25, 2016 12:46 PM

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Hi Sir and Mam. I am Jholan from the Philippines, i am 30 yrs old. sorry for my english but i will try my best to tell what is my condition. I am 30yrs old male from the Philippines. I am gay and really a hardworking person. I live to help my parents and my sister and brothers. i have 3 more brother and 1 sister. i am the eddest in the 5.

my mother have diabetes and also in medication for heart problem and father is really not helping me and really instead of having concerned to us he is giving a lot of burden to me and to all of us.

i been hospitalised last march, doctor said it was angina and my cholesterol and ldl are very high. he gaves me a lot o medication. i survive all the expenses because i have still save money. 

my mother has been hospitalised last june becasue of Pneumonia and maybe because of diabetese complications. i double hard to work to pay and provide my mothers need. all work i accept just to pay hospitals bills, buy maintenance medicine and provide healthy foods for my mother because i love my mom and i told to myself if my mom get by god i can also rest. thats how big i love my mom. 

and then this july 1st week, i got left shouldr, chest pain, shortnest of breath and muscle pain in toe. i tried to consult again even if its hard i tried thinking i need to go to doctor because my family needs me. i cant be ill. All of blood test reqyest by my cardiologist. FBs, creatine, Alt, CBC, urine and uric acid. 

my result out and it said my cholesterol is at 272, but one thing makes her bother is my CBC result. my hemoglobin is at 192 and hematocit at 52. she refer me to hematologist. By the way my cardio gives me to take Atorvastotin for 6 weeks with proper diet and exersise and she ask me if i can have a stress test which is 3,000 pesos. 

so last saturday i go to hema. Amd she said i have polycythemia rubra vera. she explain a lot and ask me to have a jak2 mutation, blood gas sample and erytropotein test to determine if i have primary or seconday PRV. 

sad to say, i really cant have thetest anymore as i am ran out of sources i ask a lot of friends and cousins if they can help me but they down me. i losing hope now. i dont want to die early. i want to have a long more day to be on my family because i love them so much. writing this makes me cry because since saturday i always cried and down. i dont know where i can tell my situation and ask help.. i want to shout. 

i really tried to find some people who have this desease hoping u could help me guys. Sorry for a long message. hope u can help or even advice me. thank you. jholan from the philippines. 

RE: Polycythemia Vera

by mokey on Mon Jul 25, 2016 01:31 PM

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On Jul 25, 2016 12:46 PM JholanFrancisco wrote:

Hi Sir and Mam. I am Jholan from the Philippines, i am 30 yrs old. sorry for my english but i will try my best to tell what is my condition. I am 30yrs old male from the Philippines. I am gay and really a hardworking person. I live to help my parents and my sister and brothers. i have 3 more brother and 1 sister. i am the eddest in the 5.

my mother have diabetes and also in medication for heart problem and father is really not helping me and really instead of having concerned to us he is giving a lot of burden to me and to all of us.

i been hospitalised last march, doctor said it was angina and my cholesterol and ldl are very high. he gaves me a lot o medication. i survive all the expenses because i have still save money. 

my mother has been hospitalised last june becasue of Pneumonia and maybe because of diabetese complications. i double hard to work to pay and provide my mothers need. all work i accept just to pay hospitals bills, buy maintenance medicine and provide healthy foods for my mother because i love my mom and i told to myself if my mom get by god i can also rest. thats how big i love my mom. 

and then this july 1st week, i got left shouldr, chest pain, shortnest of breath and muscle pain in toe. i tried to consult again even if its hard i tried thinking i need to go to doctor because my family needs me. i cant be ill. All of blood test reqyest by my cardiologist. FBs, creatine, Alt, CBC, urine and uric acid. 

my result out and it said my cholesterol is at 272, but one thing makes her bother is my CBC result. my hemoglobin is at 192 and hematocit at 52. she refer me to hematologist. By the way my cardio gives me to take Atorvastotin for 6 weeks with proper diet and exersise and she ask me if i can have a stress test which is 3,000 pesos. 

so last saturday i go to hema. Amd she said i have polycythemia rubra vera. she explain a lot and ask me to have a jak2 mutation, blood gas sample and erytropotein test to determine if i have primary or seconday PRV. 

sad to say, i really cant have thetest anymore as i am ran out of sources i ask a lot of friends and cousins if they can help me but they down me. i losing hope now. i dont want to die early. i want to have a long more day to be on my family because i love them so much. writing this makes me cry because since saturday i always cried and down. i dont know where i can tell my situation and ask help.. i want to shout. 

i really tried to find some people who have this desease hoping u could help me guys. Sorry for a long message. hope u can help or even advice me. thank you. jholan from the philippines. 

hi Jolan, I have had PCV for 10 yrs. Was put on Hydroxyureea for several years and didn't like it so went to top expert for PVC i. He is at Johns Hopkins University Hospital in Baltimore. He took me off kHydroxyurea and ordered Phlebotomies every two weeks to get my count down. Then went to every two months or as needed . Have not needed one no,w for over 6 months. My hair grew back and I don't worry now about the chance of leukemia. I live a normal lifestyle. with blood testing every two months. I try not to eat too much beef or food high in iron as iron produces red blood cells. I also eat nuts every day and fruit and vegetables and fish & seafood. I have plenty of energy and only complaint is trouble sleeping due to restless leg syndrome.. Don't know if that is related to PCV. Specialist said I will probably live a normal life span and die with PVC not because of it . So have lots of hope and a positive attitude.

RE: Polycythemia Vera

by mokey on Mon Jul 25, 2016 01:44 PM

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On Jul 10, 2016 11:56 PM Lindajoanna wrote:

On Jan 12, 2014 4:37 AM janets wrote:

I am a 54 year old depressed woman! I have PV , was diagnosed about 6 years ago, never knew about this, random blood test was very screwy, hence, this led to my diagnosis. I take hydroeria but I am noticing my hair is getting very thin..also, as described by some others, I have no energy, out of breath, etc...I am a jersey girl and when I went to the beach this past summer, trying to walk on the sand was trying! Never before was this an issue....I am always tired...but supposedly I am doing good according to my doctor..second opinion? Please advise!
Hi Janet's I just found this site today. I was dx with pv 4 yrs ago. I have the jak2 mutation. I am a jersey girl also. I am depressed with this whole mess. I have trouble walking I feel unsteady. I am not on Hydroxyurea yet. Don't even know if I want it cause I read the drug can cause leukemia. Just wanted to say hi linda
Hi , I am from Jersey also. Check out my post to Johlon. I have Jak2 mutation. That just confirms diagnosis and doesn't change things. Try the phlebotomies before Hydroxy. Top doc for this in country took me off it. Would suggest you have consultation with Dr. Jerry Spivak at Johns Hopkins University Hospital in Baltimore.". He has studied this disease for more than 20 yrs. It is less than4 hrs from north jersey..Look up his writings about PVC.

RE: Polycythemia Vera

by Josephine06 on Tue Aug 30, 2016 05:00 AM

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Hi Gusss, I know yours is an old post so ii hope you are well. Yes, there is something your docs can do for you, and that's put you on Jakafi ( it is approved for PV), and you'll immediately feel relief. Take care

RE: Polycythemia Vera

by Lindajoanna on Tue Aug 30, 2016 11:31 AM

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Hi Josephine Thanks for the advice about Jakafi. I never heard of it. Are the side effects much less than Hydroxyurea? Is it expensive? My platelets have risin 102pts since June. My doc doesn't seem to want to give me phlebotomies. I'm going to him in a few weeks. I will bring up Jakafi. Thanks for your help.

RE: Polycythemia Vera

by Lindajoanna on Tue Aug 30, 2016 08:20 PM

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Hi I'm new to this site I know you posted in 2011 don't know if you're still on the site. I also live in northern nj and am wondering who your doctor is. I don't like mine and am desperate to find a new oncologist. Linda

RE: Polycythemia Vera

by dlefuen on Thu Sep 29, 2016 06:44 PM

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Hi all,

I am 30, male, living in California. I was diagnosed with PV at age 16, and I have been managing it with phlebotomy every 2 months since then, plus a few extras when necessary. So something like 90 phlebotomies. Mostly I feel fine, but towards the end of every two months before a treatment I have pain in my spleen and general fatigue and headaches. My main concern is that I was diagnosed so young. There is not much information about the survival rate or rate of progression into myelofybrosis or leukemia over such a long period. The median survival rate is around 15 or 20 years, but most people are diagnosed in their 50s or 60s. I am hoping I can make it that far!

Zach, Los Angeles 

RE: Polycythemia Vera

by Lindajoanna on Thu Sep 29, 2016 06:55 PM

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You seem almost too young to have Pv. Yo're right most people are dx in their 50's and 69's.did you get a bone marrow biopsy? If yo're feeling ok stick with phlebotomies. However I guss eventually you'll have to go on meds. Good luck. Linda
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