Polycythemia Vera

190 Posts | Page(s): Prev 1 2 3 4 5 ...1819 Next 

RE: Polycythemia Vera

by maryannesteiner on Sun Mar 11, 2012 04:03 PM

Quote | Reply

 hi..i was diagnosed last december,having polycythemia vera is really an agony for me,since my labtests are still high (i go for labtest every friday for my cbc and apc) the doctor has to take atleast 400cc to 450 cc blood from me...it is really tiring,i weighed 180lbs before and now im 140lbs,i hv to follow doctors order nt to eat too much fatty food that includes low fat,low salt,etc..since then i do regular excercise too,bt the problem is that i sometimes feel too much pain with my bones and muscles,i easily get tired...i am now on my 14th sessions of phlebotomy and its good that my results are doing okay ...i just hope that it will be stable soon ,im so tired of going for check ups and buying my own medicine coz it is nt for free here n the philippines...i hope this can help you a bit for you to be aware of somethings...take care...

RE: Polycythemia Vera

by maryannesteiner on Sun Mar 11, 2012 04:28 PM

Quote | Reply

hi barbara,honestly after reading this i am really scared,i was diagnosed last dec.2011 for polycythemia vera and now on my 14th sessions of phlebotomy(every friday starting january 2012)...and taking hydroxyurea 3x a day...and its good u suggested to have a second opinion,i know my hematologist is really good but it is my right to get another opinion from other specialists...thank you for ....take care...and godbless

RE: Polycythemia Vera

by Ladylacy on Sun Mar 11, 2012 07:40 PM

Quote | Reply

My husband was diagnosed 9 years ago with polycthemia vera.  His blood counts and platlets were very high.  They did a bone marrow test at that time.  The hematologist/oncologist didn't want to do phlebotomy and put him on hydrea 2 500 mg pills daily.  This keeps his counts in normal ranges and he has had no sign effects from the hydrea.  In fact 18 months ago he was diagnosed with another type of cancer and we feel it kept this cancer from spreading.  When undergoing chemo for his neck cancer he was taken off the hydrea and then put back on it. 

He now goes every 12 weeks for blood work.  Our last visit I asked the long term effects of hydrea and was told it could lead to leukemia but then again so could PV and that is why we have to keep the check on his blood counts. 

For all those that say it isn't a cancer, they are wrong.  We were told from the very beginning it was a cancer just not the type that spread to other sites. 

RE: Polycythemia Vera

by healing1 on Sun Mar 11, 2012 10:19 PM

Quote | Reply

I disagree that diet is irrelevant. There are many disease processes that are made worse or even created by foods/life styles that cause chronic inflammation.

RE: Polycythemia Vera

by healing1 on Mon Mar 12, 2012 12:09 AM

Quote | Reply

This is my wifes web site but I have polycythemia vera and here is what I know. If I eat alot of rich food I will itch like crazy after my morning shower.  So I stay away from red meat, sugar, fast food, alcohol etc.  My wife (who has survived stage IV cancer) had me doing an 8 week liver cleanse which really seemed to help.  My stamina is way down.  I used to play alot of basketball and get a good sweat going but I find that virtually impossible now since I become extremely fatigued before I can build up a sweat.  However, my wife bought a Farr infared sauna that we have set up in our bedroom.  Now every morning I get in it and have a good sweat before I take a shower.  This reduces my itching quite a bit, both in length and intensity.  I can't stress that enough.  Also medical marijuana helps with the itch.  Take up bike riding for exercise.  Its easier on the joints and I can get a really good work out as I peddle up hills and can rest as I glide down.  Coated baby apirin almost every morning (I just don't remember every morning).  Good luck to you and all of our other stem cell mutation friends  

RE: Polycythemia Vera

by Heretohelpyou on Wed Apr 25, 2012 04:41 PM

Quote | Reply

I have also been recently diagnosed with the condition. I have been given the same treatment as you - removal of blood and chemo pill. I was first told it can be treated by removal of blood - if that didnt work they would have to give me the pill. however, it was working and I was still given the pill.  I asked about food and vitamins - all I was able to find out was that I shouldnt eat too much steak. Exercise is good. there has to be more, that is why I am going to see another doctor.

RE: Polycythemia Vera

by maryannesteiner on Thu Apr 26, 2012 04:39 AM

Quote | Reply

hi,i think it is your right to get second opinion but as what i understand it is common for this  kind of procedure to undergo phlebotomy and taking hydroxyurea while the cbc/apc is not stable,i do excercise twice a day bcoz i am suffering of too much pain in my bones and muscles (arthritis) sometimes i forgot to follow what my doctor told me not to eat too much salty food,i sometimes think of why deprive myself in eating food i like but its true i should take it seriously else il suffer more...im on my 17th sessions of phlebo ,and still taking hydroxy 3x a day ,i can see i already improved in many ways wth regards to my health,i only have one question if hydroxy cause hair loss just noticed that everytime i comb my hair i got lots of hair fall.or its just the shampoo that i use...godbless and dont forget to smile always.... ;)

RE: Polycythemia Vera

by morningstar24 on Tue May 29, 2012 03:55 PM

Quote | Reply

Hi there, I am a 45 year old female who was recently diagnosed with Pollycythemia vera.  I have almost all of the systems related to the disorder.  I figure I have had it for about 5 years.  I was going in for surgery on my hand and when they did the routine bloodwork they found that my blood count was extremely high.  I was sent for more blood work, x-rays, an ultrasound and a bone marrow aspiration and biopsy.

I go to a cancer centre here in Ontario Canada and my oncologist seems to know what he is talking about.  Right now I am just taking 81mg of Aspirin per day and I have my first phlebotomy on this Friday June 1.  My Dr. says he does not want me taking interferon or hydoxyurea because there are a lot of side effects.  He said if I was 70 he would give it to me but not at 45.  I hope that is the right approach he is taking.  I guess if he can't control my blood levels with the phlebotomies I will have no choice.

I have always been a healthy, strong, active person but now I just have no energy and always feel unwell in some way.  It is pretty depressing knowing that my life will be cut short because of this disorder.  I am a non smoker and non drinker and took care of my health.

I am hearing conflicting opinions on whether or not certain food consumption plays a role, my Dr. just told me to never take any iron supplements or vitamins with iron.  Never mentioned any food restrictions.

I wish you all well with your journey with this disorder.  Stay positive and enjoy every day as best you can.

God Bless,

morningstar

RE: Polycythemia Vera

by SAMEOSAMEO on Mon Aug 20, 2012 10:43 PM

Quote | Reply

Hi:

I have recently been diagnosed with PV and like you my head is spinning with the diagnosis and trying to find out more about it. I liked reading what everyone said in here. I didnt realize you had to watch what you ate also. My first Dr. Appt for this is on Wed the 22nd of Aug and would like to go in armed to the teeth with questions. Does anyone have any good ones to ask. I have no idea what to ask! 

Thanks for your help

Karen

RE: Polycythemia Vera

by GUSRENTIT on Thu Aug 23, 2012 02:31 PM

Quote | Reply

 Hi all, I'm new here, and I too have PV primary. I live in Southern Colorado. A little background, I'm a 55 yr old male and I have always been as strong as a bull, and very active, now I can hardly walk from one end of the house to the other, without loosing my breath, I also lost most of my strength. About 4 yrs ago, I got very sick, with a head/chest cold/flu, saw 3 doctors, they all said I had something different, was put on several antibiotics, nothing help, and it took 9 months to recover, somewhat. Then, last fall I got sick again thought it was a cold/flu, but it would not go away, and got to the point I thought was dying, so I went to yet another doctor, and he did not like what I looked like, so he did a CBC, and send me to a Hemotologist, he said you have PV, I had all the tests known to man, results NO Cancer! So I got go see the blood suckers, for months, the problem was that after getting rid of the blood, I felt far worse. End results so far, I'm on oxygen almost 24 x 7, and take about 900mg of aspirin a day. I'm barely functional, my body does not deal well with temperature change or body temp control, I could be sweating like crazy @ 70* or shivering cold @ 95*, I can not tolerate direct sun, at all, regardless of air temp. Everything I read says no cure, docs say nothing more they can do for me. You folks have any sugestions?

Thanks,

Gus

190 Posts | Page(s): Prev 1 2 3 4 5 ...1819 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.