Polycythemia Vera

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RE: Polycythemia Vera

by dlefuen on Thu Sep 29, 2016 07:15 PM

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On Sep 29, 2016 6:55 PM Lindajoanna wrote:

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

Hi Linda, 

Yes I have the JAK2 mutation, had that test done early on. I have had three hematologists, and each has said that I am one of 2 or 3 patients they have seen who were diagnosed that young. My first dr said that I was his youngest PV patient ever.

Thanks for the reply.

Zach

RE: Polycythemia Vera

by Sandridge on Thu Sep 29, 2016 09:46 PM

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You'll make it! Just keep a positive attitude and listen to your body. Sounds like it already tells you to get your count's checked! I was diagnosed at 55 in 2011, a few months later, diagnosed with Colo-rectal cancer. I don't know the connection with leukemia, but I have an old friend who is still around after leukemia in the mid 90's, Marty Liquori. He's pushing 70 now. Stay strong, best of luck!

RE: Polycythemia Vera

by Lindajoanna on Thu Sep 29, 2016 10:55 PM

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Hi Zach. I'm curious if anyone in your family had Pv? Are your docs talking about meds? Hydroxyurea has a bad rap cause it could cause leukemia after long term use. I guess you know that. Jakafi seems to be the newest all that drug for us. I was dx @ 60. I'm 64 now. I need to start meds soon cause my plates are high 859 last count but my hematocrit is normal. Linda

RE: Polycythemia Vera

by Zhacckrr on Tue Oct 04, 2016 06:15 AM

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Hi everyone! My name is Kaycee I'm 28 years old. I haven't been diagnosed yet with PV. I have multiple high RBC, WBC, erythropoietin, hemoglobin, and hemocrit levels. No problems with my spleen, heart, or brain. Went to get checked out cause I was getting really bad migranes with horrible pain in my hips and legs. 30 something more vials of blood within 4 months no JAK2 mutations present, just high CBC's. Starting phelobotomies this week. Doctors think I'm extremely young for a diagnosis so I think they are waiting. I just was loowing through this board and thought I'd introduce myself.

RE: Polycythemia Vera

by Lindajoanna on Tue Oct 04, 2016 11:53 AM

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Hi kaycee welcome you are very young to have this disease. It's usually about 60 yrs old & over @ diagnosis. What is your platelet number? I am 64 and was dx @ 60. Pv tends to go along with arthritis and gout. Glad you have been dx and are on the path of treatment. Linda

RE: Polycythemia Vera

by Snookum2 on Tue Sep 04, 2018 10:43 PM

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I am very interested in the effect of altitude and humidity on PV as well. I have two homes that are in relatively high elevations and very arid. One home is at 8000 feet and extremely arid. I keep humidifiers going at all times there. 

April

RE: Polycythemia Vera

by JordyEm on Thu Oct 25, 2018 04:57 PM

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I know your post is ~2 years old now but I'm wondering how you made out with a diagnosis, treatment, and how you're doing. I have PV - diagnosed 6 months ago, but realize that I've probably had it for some time (hindsight is always 20/20, isn't it:). I hope you're doing well.

RE: Polycythemia Vera

by davidmn on Wed Nov 14, 2018 05:37 PM

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On Apr 02, 2016 2:44 PM jgard967 wrote:

Everyone I believe this cancer could be cutedy andbi found out some important info that could help us go into remission and possibly cure it. Please go to the myelofibrosis forums in this website and there is a protocol that people have been doing that helped them go into remission someone who had polycythemia Vera did the protocol and went into remission, the protocol consists of high amount of ascorbic acid (vitamin c) about 40 grams and low amounts of sodium selenite about 5mlg the reason vitmain c put myelofibrosis in remission and could help is us put polycythemia Vera in remission is because it is a jak inhibitor which inhibits the mutated jak gene this could have potential in treating this disease please do research to find out more!!!

Hello,

Can you please tell me how to get 40Gr of Calcium? Do you take any supplements? I know that Cacadu Plum and Camu Camu contain a lot of vitamin c but not as much as you mentioned. 

Ive been researching everywhere on how to treat poly vera (jak 2 mutation) naturally but in vain

Thank you in advance. 

RE: Polycythemia Vera

by roltom55 on Sat Mar 02, 2019 08:27 AM

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I started getting PCV symptoms about a month before I noticed swallowing problems I think it’s tongue cancer and squanomous cell carcinoma (SCC) my doctor put me on arithromicin short course and pretty much doesn’t care. Symptoms are getting worse.going to find new doc.had to beg for MRI told her I was getting dizzy spells /red skin-from high blood levels she told she just couldn’t order one because I wanted one .i thought I had a brain tumor.she finally relented MRI came back negative.since then she doesn’t seem to care about my other symptoms.ANYHOW what I want to know is how did his surgery go and how does his neck look and does he have any pain now.?lymphademeay? Because I’m sure they took lymph nodes out .Any info would be greatly appreciated.thak you and I hope he’s doing well.

RE: Polycythemia Vera

by niggy2403 on Sat Jun 08, 2019 08:59 AM

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hey guys,

I am a 29 year old Male. I was having my Hg on the higher side but not high to be alarming to doctors considering that I was a smoker my hg would be between 17-18.

I had no symptoms, then one day in 2014 i went for a routine blood test and later the lab called me and told me my HG was 20.8. My GP found it weird that it would be high and I had no symptoms. He suggested I recheck after a week. It was around 19 then and he suggested I see a Hematologist.

The hematologist explained to me why high and low Hg levels are not good, and begun asking if i take any medications, family history etc. He then gave me a huge list of blood tests to do and said if any tests come positive then we stop there and proceed for treatment, if they do come negative then a bone marrow biopsy and aspiration would be needed.

The tests all of them turned back negative. Only my HCT, HG and red cell count would be high. He stated I have secondary polycythemia caused by external factors and asked me to quit smoking in steps. Phlebotomy was only adviced. Aspirin he suggested against since I had no cardio vascular risks. No other mediciations but folic acid and b12 since i have a MTHFR mutation.

to help answer few folks questions above regards to hairloss and diet I Understand that most have PV and may be different from me but incase it does help anyone.

My doctor asked me to have tea or coffee without milk after every meal to reduce intake of iron, keeping levels below mid range was what he suggested, my levels were slightly elavated, no supplements or multivitamins with iron to be taken.

I did notice that during summer months or high humidity months my levels would rise. But maintaing adequate hydration, and using the air con to get humidity down as well as exercise would keep levels around 16-17 I managed by going for donations once in 3 months, they would accept my blood provided Hg levels were below max. I have no issues with higher altitude, but being out in the open alot ( I am a photographer so i spend a considerable time outdoors) has kept levels down.

This summer the heat was bad and i was Indoors more often my levels went back upto 20 and i had 5 Phlebotomies in 2 months to bring back to normal i felt fine after all but the last one made me very weak and i would feel light headed for 3 days HCT was down to 42%, my family physician said any level between 45-50 would be fine the highest hct level i had was 58% and red blood cells about 5.90 my platelets vary between 240-290 and WBC were always normal.

About hairloss, due to blood being thick as well as high hemoglobin can affect the blood flow to the hair follicles hair can get thin and fall off. I have been having hairloss since 2014, recently I saw a derma, he suggested that due to higher HG levels hair can fall off and can return back if the levels are kept under check but if it has been a long time then it might not grow back. He suggested i try rogaine as well as take biotin and use shampoos that are not harsh. I am on the second month of that regime and i can see some tiny vellus hair on my frontal portion. I guess the others could consult with a derma to help prevent more hair loss and to regrow hair back.

Thanks, hope you all are doing well.

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