Polycythemia Vera

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RE: Polycythemia Vera

by morningstar24 on Tue Apr 09, 2013 03:27 AM

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Hi meabouthis,

Thanks for sharing your experience.  I have been doing ok this last little while.  I go on April 12 for my regular checkup.  Hoping that my numbers are all where they should be.  I wish you all the best in your journey with this crazy disorder.  Keep a smile upon your face and enjoy every day as best you can.  Take care!

RE: Polycythemia Vera

by mushysway on Tue Apr 09, 2013 06:13 AM

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hi morning Star. saw your update this morning. Im from the Philippines and i have PV starting 2008. been taking hydroxy urea 2x a day. i just started to take seriously the hydroxyurea this december 2012.  have normal rbc and platelet now (from 800 to 390)  but my wbc are high. ( 18000) i was scared if i continue wbc it might lead to anemia / leukemia. did other cbc and other result said wbc is normal but rbc and platelet quite high. im just confused. i wanted to have a baby  but hematologist said have to consult obgyne. im not feeling any. only itchiness after bath and bleeding gums. bcr abl are negative but my hematologist said have do it again (as if she wanted me to have a leukemia) . i am just 29 years old. dont want to take hydroxy urea forever. doctor said no need to do plebotomy since rbc is normal. i am jak2 positive when we did bone marrow last 2010. just wanted to share and help if how can i have a baby. if you know any ob here in the philippines who have handled polycytemia vera patients. thanks

RE: Polycythemia Vera

by morningstar24 on Tue Apr 09, 2013 01:40 PM

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Hi mushysway,

Sorry to hear you are having a rough time.  I belong to a couple of Polycythemia support groups on Facebook.  You should go on there because there are a lot of people who share their experiences and they have a lot of great info and links that you can go to.   Not to mention they are a really nice group as well.  I know there is one girl named Anne who is from the Philippines. She is a sweet heart, I'm sure she could help you with some information.   Best of luck to you.

RE: Polycythemia Vera

by kelly1985 on Wed Jun 19, 2013 09:01 PM

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hi, i have never posted on a blog before and nor have i been told i have pv. I am after some advice, over the past say 5 years i have been back to my doctors as i feel realy unwell, tierd and no energy. they have told me on many occasions my red blood cells count is very high which did not make sence to them as i am not anemic. early on this year i was admitted to hospital with extream dizzyness and felt like my brain was to big for my head. since then i have suffered from headaches, dizzyness, nosebleads, and itchy rashy legs. i am so fed up of feeling like an old woman as i am 27. the doc has sugested that i go for a bone biopsy and a brain scan, my records state that i have had high levels for the past 7 years and nothing has been mentioned. could someone please tell me if i had pv would it have been found with a blood test. thankyou for listening kelly

RE: Polycythemia Vera

by GUSRENTIT on Wed Jun 19, 2013 09:39 PM

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On Jun 19, 2013 9:01 PM kelly1985 wrote:

hi, i have never posted on a blog before and nor have i been told i have pv. I am after some advice, over the past say 5 years i have been back to my doctors as i feel realy unwell, tierd and no energy. they have told me on many occasions my red blood cells count is very high which did not make sence to them as i am not anemic. early on this year i was admitted to hospital with extream dizzyness and felt like my brain was to big for my head. since then i have suffered from headaches, dizzyness, nosebleads, and itchy rashy legs. i am so fed up of feeling like an old woman as i am 27. the doc has sugested that i go for a bone biopsy and a brain scan, my records state that i have had high levels for the past 7 years and nothing has been mentioned. could someone please tell me if i had pv would it have been found with a blood test. thankyou for listening kelly

Kelly, so sorry you feel so bad! I'm far from a doctor, but it sounds like it could be. You start with a CBC, the HCT range should be around 42 to 52, your HGB should be 12.5 to 16.3. I feel better closer to the 42 HCT, but Im a male 56 yrs old, sex and age makes a differance. Have docs do the CBC, and talk to a hemotologist, only after that, do the bone biopsy. I live at 5100' elevation, and I'm looking at selling everything, and moving to a lower elevation state 900 miles away. After you know that you have it, then there is things you can do to feel better, I do NOT take any Rx's for it. I do take a lot of L-Arginine, and 2 full size Aspirins(am/PM), no side effects, at first the docs tried to kill me with drugs, the side effects where real bad. Now the docs are finding out that I also have lung/heart issues, so now test after test. At least I have the best doc, in the best hospital in the country, National Jewish Hospital, in Denver, Co.

RE: Polycythemia Vera

by Bosley on Wed Jun 19, 2013 09:52 PM

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Hi Kelly,

I actually for the first time today posted on this site, looking for some kind of answer too.  I was just recently told i have  Essential Thrombocysis, and after my bone marrow biopsy i  have JAK2 mutation and scarring of my bone marrow.  On top of all of that- i was 13 weeks pregnant when told of all this.  A few days ago we lost the baby. Is it because of the disease?! Who knows right?  Sad, confussed, and fustrated with this disease that really they (dr's) seem to have no cure or treatment for is going to drive me crazy.  Where do i go from here, what do i do, what should i expect, will it turn into cancer, question after question.I am certainly no help to you- i know- but i does feel good to have someone to talk with.  thanks for listening. i pray for you and all that are dealing with issues.  they are all scary.  keep asking questions to your doctor, make them do all the tests.  For PV make sure they do an ultra sound of your spleen. that can tell them a lot before having to go through the bone marrow test.  My levels were found due to my pregnancy.  Platelets were over 1million, RBC elevated, Wbc elevated... you name it i felt like they found....  And so the tests began.......  and now all the questions are left. 

take care and hang in there. 

 

RE: Polycythemia Vera

by morningstar24 on Wed Jun 19, 2013 10:41 PM

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Hello there,

I was diagnosed with PV one year ago.  I am also JAK2 positive.  My platelets hover around one million, my white cell count is raised slightly and my red count continues to constantly climb after all of my phlebotomies.  I had several blood tests, an ultrasound and x-ray plus bone marrow biopsy and aspiration to help with the diagnosis.  I was also told I have Essential thrombocytosis.  The only meds I take is one 81mg aspirin every day.

I don't understand why you were not  told you had PV if you are JAK2 positive.  It is my understanding that PV is a MPN, a slow growing blood cancer.  It is now recognized by the Leukemia and Lymphoma society as belonging to that group of cancers.

I wish you all the best with your journey with these disorders.

RE: Polycythemia Vera

by Sandridge on Thu Jun 20, 2013 01:53 AM

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I've been on here for about 2 years. I watch, look and listen, but say little. I was diagnosed 2 years ago with PV.I was 55. I went thru 3 Phlebotomies, 1 a month, Then a colonoscopy, because I was bleeding, turned out that I had a tumor in the middle of my rectum. I am possitive that it had nothing to do with PV. I remember the DR. coming in and saying, "We found cancer, It Is NOT going to kill You" I kept, and still have a Positive attitude on this. So Far, I beat it. I do not delve into the numbers on blood counts, I am not as into it as most on this site, I do not deny anything they tell me I have, I just have such a laid back attitude on it, That Attitude gets Strictly Positive if there is any doubts.  
     When I was diagnosed from the colonoscopy, My Oncologist told me that I was the first He ever ran acrossed that had PV and colo-rectal cancer. The PV kept it from being apparent in the blood tests, from what I recall, as PV keeps You from being anemic, while anemia will indicate cancer. I did not research anything I am writing, so feel free to correct me on anything I write here.
     Like I said, I do not delve into the blood counts, I am not a doctor and they are just numbers to me. I have to call Tomorrow as I went for blood work Today. 3 Mos. ago, He said my cea, I think, was 4.3, borderline? I don't question, I JUST KEEP MY CHIN UP!
    You ALL do the same!

   Gus, local Sams doesn't have any more Cardio- Defender, may in the future. I want to let You know that my blood pressure has gone from around 160/90 to 130/70-78 by going on a Gluten Free Diet. I find most of what I will eat at the local Krogars. If You haven't tried it, give it a try.   Dave

RE: Polycythemia Vera

by GUSRENTIT on Thu Jun 20, 2013 02:25 AM

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On Jun 20, 2013 1:53 AM Sandridge wrote:

I've been on here for about 2 years. I watch, look and listen, but say little. I was diagnosed 2 years ago with PV.I was 55. I went thru 3 Phlebotomies, 1 a month, Then a colonoscopy, because I was bleeding, turned out that I had a tumor in the middle of my rectum. I am possitive that it had nothing to do with PV. I remember the DR. coming in and saying, "We found cancer, It Is NOT going to kill You" I kept, and still have a Positive attitude on this. So Far, I beat it. I do not delve into the numbers on blood counts, I am not as into it as most on this site, I do not deny anything they tell me I have, I just have such a laid back attitude on it, That Attitude gets Strictly Positive if there is any doubts.  
     When I was diagnosed from the colonoscopy, My Oncologist told me that I was the first He ever ran acrossed that had PV and colo-rectal cancer. The PV kept it from being apparent in the blood tests, from what I recall, as PV keeps You from being anemic, while anemia will indicate cancer. I did not research anything I am writing, so feel free to correct me on anything I write here.
     Like I said, I do not delve into the blood counts, I am not a doctor and they are just numbers to me. I have to call Tomorrow as I went for blood work Today. 3 Mos. ago, He said my cea, I think, was 4.3, borderline? I don't question, I JUST KEEP MY CHIN UP!
    You ALL do the same!

   Gus, local Sams doesn't have any more Cardio- Defender, may in the future. I want to let You know that my blood pressure has gone from around 160/90 to 130/70-78 by going on a Gluten Free Diet. I find most of what I will eat at the local Krogars. If You haven't tried it, give it a try.   Dave

Dave, you are correct, Sam's Club stopped carrying Cardio Defender, but we went to their website and got it there for $20 with free shiping on orders $50 or more, I got 5 boxes. Dave I keep track of my numbers, so I can see how fast it's going up, the first 10 months the Vampires were taking 3 plus pints a month, now 1 every few months. Take care......

RE: Polycythemia Vera

by janets on Sun Jan 12, 2014 04:37 AM

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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!
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