Polycythemia Vera

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RE: Polycythemia Vera

by BarbaraAnne on Fri Jul 01, 2011 01:49 AM

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My father's doctor said the same thing.  My dad ran 20 1/2 marathans too.  However, last Nov. 2010, it progress overnight to Myelofibrosis  and soon after leukememia.  Within 7 months he died. (June 13, 2011).

The only cure was a BMT and stem cells.  This procedure is only done for those 70 and under.  You should go to a cancer treatment center.  (Be sure to get a 2nd and 3 opinion!!)  -I wish my father did, when he trusted his doctor and thought he was well.

 As you know, this is a very rare blood disease.  It is at the cacer treatment centers, where the doctors contine to research and treat this disease.  These doctors continue to work with doctors all over the world to treat it.

Good luck and stay well.

Barbara Anne

RE: Polycythemia Vera

by healing1 on Mon Jul 04, 2011 02:23 AM

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thank you so much Barbara.

Casey

RE: Polycythemia Vera

by healing1 on Mon Jul 04, 2011 02:26 AM

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I'm sorry to see your dad just passed too. My love goes out to you.

RE: Polycythemia Vera

by healing1 on Mon Jul 04, 2011 02:26 AM

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I'm sorry to see your dad just passed too. My love goes out to you.

RE: Polycythemia Vera

by Zapnoodle on Tue Jul 12, 2011 03:35 PM

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On Apr 26, 2011 5:13 AM morgoth31 wrote:

but yes it is like one but unlike cancer as everyone sees it it wont spread it wont move to other systems. look at this page.

 

http://www.fpnotebook.com/hemeonc/Marrow/PlycythmRbrVr.htm "" target="_blank" rel="nofollow">http://www.fpnotebook.com/hemeonc/Marrow/PlycythmRbrVr.htm " target="_blank" rel="nofollow">http://www.fpnotebook.com/hemeonc/Marrow/PlycythmRbrVr.htm

this is a disorder a myeloprolific disorder or MPD

and this site

 

http://www.polycythemiavera-pv.com/faqs.html "" target="_blank" rel="nofollow">http://www.polycythemiavera-pv.com/faqs.html " target="_blank" rel="nofollow">http://www.polycythemiavera-pv.com/faqs.html

this isnt what most people are thinking about when they hear cancer tho some docs call it a neoplasm which is technically a cancer.

PV is a very specific type of cancer. The World Health Organization (WHO) has recently reclassified PV from a myeloproliferative disorder or MPD to a myeloproliferative neoplasm (cancer) or MPN. They have reclassified PV under the category of hematologic malignancies.  They separate lymphoid from myeloid processes wherein each is in turn classified as being acute or chronic, depending upon the proportion of morphologically and immunophenotypically immature precursors (blasts) in the bone marrow. Please research further by viewing:http://onlinelibrary.wiley.com/doi/10.1002/cncr.24440/refere

Hope this has helped.

RE: Polycythemia Vera

by lov2laf on Thu Jul 14, 2011 01:42 AM

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On Jan 10, 2011 8:23 AM flanjivfur wrote:

Does anyone have polycythemia vera? Please let me know. I have been recently diagnosed. I need to know info on what I can and can't eat and what vitamins I can take. I have been researching but my head is spinning with all I've found. One article will tell me one thing and the next another. Please Help.

Lots of myths on PV have been posted, so beware. Good info at wrongdiagnosis.com . Go to a facility at www.mpd-rc.org or if not possible use a university level teaching hospital, hematology department. Routine follow up care ok with any local community oncologist. We have rare disease about 4 per 100k. 30-50% progress to agnogenic myeloid metaplasia with myelofibrosis. Interferon may be able to induce a partial remission early on. Hydroxyurea will control counts. Food mostly irrelevant. Don't feed your PV with excess vitamins, discuss with the expert. bit.ly /joinmpdsupport, www.mpdsupport.org , since 1994, 3,000 subscribers from 42 countries. Robert I'm not a doctor but a PV patient list owner about 20 years. Dx in 1990. 

RE: Polycythemia Vera

by Sandridge on Tue Sep 13, 2011 11:04 PM

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Hi all.
I just joined this site and I do have PV (as I was told a few months ago) My wife searched for diets and is not restricting me from anything. There may be other reasons for that, I will get to them. i've read all the posts on this site, and looked at one of the links. I will explore all the links, but wanted to join, as I feel this is the site I want to be with. For the fun of it, can we drop an a and e and make cncr a 4 letter word? 3 weeks ago I had my 1st colonoscopy, at 55. Colon is fine, not even a polyp! (but Dr did tell my wife I have diverticulitus, so what ever I eat will most likely have a seed in it!!) Rectum is another story. 10cm in there is a 2cm tumor that the Dr described as cancer. my oncologist is 56 or 57, he told me I am the first he has run acrossed with PV and rectal or colon cancer.
One of You mentioned Your Father ran marathons with PV, I too, am sorry to have seen that He is no longer with us. I have been running again (after a 30+yr layoff) since Feb. '11. I never ran a marathon, but in the day, I did run a 4:02 mile. I am not going to stop now that I can run again, and the Dr.'s are all for me running. I was tatooed today for radiation. I start Chemo and radiation on monday, 19th of Sept.
i will check on the Wilmington, Del. site. Can they use us, or our blood?
I am very confident with the care I am in and holding my head up. Hopefully, I have all this, and some 5 year old child does not!    Thanks,    Dave

RE: Polycythemia Vera

by BarbaraAnne on Wed Sep 14, 2011 10:03 PM

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On Sep 13, 2011 11:04 PM Sandridge wrote:

Hi all.
I just joined this site and I do have PV (as I was told a few months ago) My wife searched for diets and is not restricting me from anything. There may be other reasons for that, I will get to them. i've read all the posts on this site, and looked at one of the links. I will explore all the links, but wanted to join, as I feel this is the site I want to be with. For the fun of it, can we drop an a and e and make cncr a 4 letter word? 3 weeks ago I had my 1st colonoscopy, at 55. Colon is fine, not even a polyp! (but Dr did tell my wife I have diverticulitus, so what ever I eat will most likely have a seed in it!!) Rectum is another story. 10cm in there is a 2cm tumor that the Dr described as cancer. my oncologist is 56 or 57, he told me I am the first he has run acrossed with PV and rectal or colon cancer.
One of You mentioned Your Father ran marathons with PV, I too, am sorry to have seen that He is no longer with us. I have been running again (after a 30+yr layoff) since Feb. '11. I never ran a marathon, but in the day, I did run a 4:02 mile. I am not going to stop now that I can run again, and the Dr.'s are all for me running. I was tatooed today for radiation. I start Chemo and radiation on monday, 19th of Sept.
i will check on the Wilmington, Del. site. Can they use us, or our blood?
I am very confident with the care I am in and holding my head up. Hopefully, I have all this, and some 5 year old child does not!    Thanks,    Dave

Hi Dave,

Good luck w/ your chemo.  When my dad 1st started w/ policythemia they would drain his blood,  so that he would not have too many red blood cells.  (He always felt that his trip to Machu Pechu,  Peru triggered his condition because of the altitude.)

Who knows.  Maybe it is good that they found your tumor, since that is curable. (It might very well be a blessing.) Since you are under 70...you will also be a candidate for stem cells.  My Dad's friends w/ were diagnosed w/ cancer prior to his illness are actual still alive and doing well.  It's the blood cancers that are really hard to treat.

Where are you getting treatment?  I hope it is at a Cancer Center.  I wish my Dad had been referred to a Cancer treatment center, when he was first diagnosed with Policythemia.  The scarey thing about this disease is that the Jak 2 gene can jump into mylofibrosis and this is very deadly.  Don't mess around.  Since you are well, start researching the best doctors in your area/country.  I did corrospond with some wonderful doctors from MD Anderson and other excellent hospitals.  They all wanted to see my Dad...the problem was he was too sick to travel far.  (

By writing this note yourself...shows that you are willing to go the extra mile to get better.  Good for you!!

Barbara Anne

RE: Polycythemia Vera

by Sandridge on Wed Sep 14, 2011 11:31 PM

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My sisters name is Barbara ann, not sure if she has the "e".

They were draining my blood for the last three months, but the Dr. has ordered a stop to it while on chemo and radiation.

I am being treated at United Hospital Center in Clarksburg/Bridgeport, West Virginia, USA, and it is in the cancer treatment center there. I am VERY confident with the hands I am in there. Since the diagnosis, they have not wasted a minute to get me to this point, and all the staff is very receptive to my being there. One nurse last week at the cancer center knew where she was supposed to take me for the consultation about radiation. She looked at me and said "have I seen you here before" I said yes, you have taken me back for phlebotomies for PV. I could see her heart sinking, having to take me back for cancer.

You mention MD Anderson Hospital.  MD is the abreviation for the State of Maryland, any connection?

Thank You So much for this info, I have a lot of reasons to go on with a normal life, things to do!    Dave

RE: Polycythemia Vera

by chelle3 on Thu Jan 12, 2012 03:22 PM

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Hi, I also have PV and live in Northern NJ.  Would you mind sharing the name of the dr. you found?  I have been going to a hemotologist since being diagnosed, about 5 years ago but I have never felt really confident with her.  It's hard to switch from a dr. you started with, I guess fear of the unknown.  It would definately be easier to switch to someone with a glowing recommendation.  Thank you.

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