Polycythemia Vera

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RE: Polycythemia Vera

by hohjoe on Wed Sep 17, 2014 02:34 PM

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On Sep 17, 2014 6:39 AM nksood wrote:

hi 

i am 66 yr old male (with cold feet!!!).i have undergone 5-6 phlebo till now in 2 yrs.i have thinning of hair.nowada "" target="_blank" rel="nofollow">http://hair.nowada " target="_blank" rel="nofollow">hair.nowada ys i am taking naturopathy & feel much better.my "" target="_blank" rel="nofollow">http://better.my " target="_blank" rel="nofollow">better.my suggestion to all pv patients is to be positive.First "" target="_blank" rel="nofollow">http://positive.First " target="_blank" rel="nofollow">positive.First step in that direction is to stop calling  doctors vampires,they are doing their job & trying to help us.I may be prejudiced because I am a doctor!!!!!!!!!!

I am positive.

I don't call the doctor as a vampire; I call the nurses that and, at least in the office I visit, they refer to themselves as vampires.

I have a phlebotomy about 15 times a year.

Isn't naturopathy just a generic term for all types of alternative medicine?


RE: Polycythemia Vera

by nksood on Thu Sep 18, 2014 08:22 AM

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Hi Good day!

15 phlebo a year is rather high number.I too think naturopathy & alternative medicine are same.Stay positive & visit your hematologist regularly.

RE: Polycythemia Vera

by Sandridge on Fri Sep 19, 2014 01:10 AM

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On Sep 18, 2014 8:22 AM nksood wrote:

Hi Good day!

15 phlebo a year is rather high number.I too think naturopathy & alternative medicine are same.Stay "" target="_blank" rel="nofollow">http://same.Stay " target="_blank" rel="nofollow">same.Stay positive & visit your hematologist regularly.

I was getting phlebos monthly for about 3 mos. in 2010, then diagnosed with colo-rectal cancer. I have been getting cea's checked every 3 mos. since Jan. 2011 op. I Trust My Oncologist with My Life, He is looking for cancer in the cea's, but He also told me I am the first He has ever ran acrossed with PV and Colo-rectal cancer.

Don't Know if I have stated this before here, PV can blindside cancer. Cancer causes anemia. PV can hide that sympton.

I Don't mean to cause alarm, but All with PV should have cea's monitored.

 

RE: Polycythemia Vera

by COCOX2 on Tue Oct 07, 2014 02:56 PM

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Hi, I'm a 49 yo female and was finally diagnosed with PV in February of 2014.  What a ride this has been!  I also have Hemochromatosis and trying to manage both of them has been extremely difficult.  I'm super frustrated, depressed and think this is how my life is going to be from now on.  I had the hh for about 10 years prior to the diagnosis of PV so getting "drained" for that amount of time destroyed my veins.  I now have a chest port which flipped over.  I'm too young and have too much life ahead of me to have this be the "norm".  I'm still working because I have too.  It's such a struggle everyday.  My whites and platelets are normal so the only treatment is getting drained.  Does anyone else have hh w/PV?

RE: Polycythemia Vera

by Imtwin64 on Wed Nov 19, 2014 02:36 AM

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I am also 49. Almost 50 and going through the labs for tests. I have been running all reds high. And had one recent normal but white was messed up. Has anyone had that happen?? I have an oncologist that really seems to understand PV.

RE: Polycythemia Vera

by DCK7754 on Sat Jan 10, 2015 06:57 PM

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Hi Karen, I have just joined this blog and I am reading through from the beginning. I found that I had PV about three years ago, when I was having blood work done to try to get to the bottom of the pain I was experiencing and when the phlebotomist had to manually draw blood out of me due to it being so thick. When I saw that I looked it up on the Internet found PV and noticed that the symptoms were all mine. so I brought this up with my primary care MD and he dismissed it because my WBC and playlets were normal. My RBC and HCT were high. But he said no. He didn't have any good reason why my blood looked like a slurpie but thought my pain was due to a stenosis (narrowing) in my vertebra. Isn't it maddening sometimes what we have to deal with? Anyway a couple years later and my symptoms are getting worse. I now am under the care of an acupuncturist and she has labs done and comes up with PV on her own. My hematocrit has been over 45 forever. But I started donating blood a lot. Basically using it as the phlebotomy. Anyway to get to my question. We decided that it was wise to see a hematologist and I just saw him for the first time on Thursday. He has me being tested for Sleep Apnia and also having more blood tests to see if my EPO Erythropoietin is high and check for The bio marker for JAK2. Because of the fact that I have had issues with my spleen, he also has me getting a CAT scan to see if I have any rumors on my kidneys. So the question is around your comment of g eating oxygen at night. Is this for Obstructed Sleep Apnia?

RE: Polycythemia Vera

by Pnutlady on Sat Feb 07, 2015 01:21 PM

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I was diagnosed with PV primary about five years ago. I was sent to a cancer center for treatment. The form of treatment has been the usual, low dose aspirin, and phlebotomy. I went for my quarterly check this week and was told my platlets are going up. I was also told to avoid all alcohol because this will make my condition worse. I was shocked to hear this. I was drinking two to three glasses of red wine a week thinking it would help thin my blood. I've read several different websites regarding PV and can't find anything that says to avoid alcohol. I'm wondering if any of you have been told the same thing. I find suggestions on foods and drinks that help lower platlets such as kiwi, green tea, dark chocolate, purple grape juice, and vitamin E.

RE: Polycythemia Vera

by Sandridge on Tue Feb 10, 2015 12:24 AM

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I don't really have an explanation for You. I have been point blank with My Oncologist on my drinking habits, as well as with My Surgeon and Gen. Doc. NONE have said anything about My alcohol consumption, which is a lot more (and harder) than Your intake? I was diagnosed with PV in early, mid 2011, I had monthly draws for a few months, then diagnosed with Rectal Cancer. The draws ceased, I have not had any since. I am not one to complain about anything, But I need to be more vocal! I have not been to a Dentist in 30yrs., in the last few years I have probably bled 2-3 ounces a day from my gums, therefore, I do not need a draw

RE: Polycythemia Vera

by Pnutlady on Tue Feb 10, 2015 12:42 AM

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Thank you so much for the reply. I hope they caught your cancer in the early stages and you will have a successful recovery. I will keep you in my prayers.

RE: Polycythemia Vera

by Sandridge on Tue Feb 10, 2015 01:56 AM

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Thank You Too! It was caught early, as I was alerted from My own body that something was not right. I noticed blood here and there, then one day just pooped nothing but blood. It was only a matter of days before a colonoscopy, then I was on chemo and scheduled for radiation. I hated that, especially the chemo. Another colonoscopy in a couple months, if all is OK, And STAYS OK, looking fwd to Jan. 11, 2017, That will be 5 Years, and I can declare Myself Cancer Free!!  
I think I have stated here before that PV can blindside cancer. Cancer causes anemia, We with PV produce so many Red Cells, It Is Undetectable.
You Take Care, Make Your Own Decisions, AND---ALWAYS Keep a POSITIVE Attitude in Your Life's Journeys!

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