life expectancy for polycythemia vera

I've had p-vera for about 15 years. Doc says the prognosis is 'listen to me and I'll keep you alive and you'll die from stress or fat or children and not p-vera.' Works for me, so I see Doc 6x a year. So far so good.
Good luck.

Ozzie, I wouldn't worry too much.  I was diagnosed with PV in 1988 and it's 2012 now.  At first, treatment was frequent phlebotomies, then when I moved and saw a new hematologist, he added hydrox urea (taken in varying amounts depending on CBC results).  Now I'm on another doc (I've moved a lot) who has deleted the urea and now prescribes anagralide.  I'm 68 y.o. now and slowing down naturally.  There have been side effects but I've come lots closer to death from people than PV -- it's never put me in the hospital either....  Just live your life and consider your doctors part of your social life and support group.  It works for me!

Most articles say 10-15 years and some say up to 25 years if the patient is diagnosed young. I was diagnosed 28 years ago with a bone marrow biopsy, but I had been symtomatic for the previous 16 years. With chemo (Hydroxiyurea and/or Anagralide) I have done very well.

I am in my twenties and have been diagnosed with PV, very recently. I have had 6 phlebotomies in the past 3 weeks! All literature says that prognosis is approx 20 years and that the risk of leukaemia is high... and so on. How does all this affect my hope to have a family? Is it okay to have kids? (I dont have the jak-2 mutation)

I recently started a support group on facebook for people with the disorder to share stories and at home remedies and meds they use, or just to be there for one another. Please search it on facebook polycythemia vera and like it please share stories and how you handle it. Thank you so much

HI all - my husband has PV, is 58 years old, and was diagnosed 7 years ago. One thing he has figured out on his own to help keep his blood counts down, is to watch his iron intake. He has drastically changed his diet; very little red meat (once every 3-6 months), little to no beans (chili, kidney, etc.) and low iron bread. When he goes in to have his counts taken, many times he does not need phlebotomy because he can keep it at or below the required counts. Just passing along!

I think this is great advise. I have often wondered about the foods that should be avoided. My Hematologist wouldnt answer me when I asked him about it. Though he did say not to take too much iron. I now that you cannot take any vitamins will iron in them. I have had PRV for 19 months and am getting better. Thanks for you advise

Hello ozzie1533, I have a love one who is diagnosed last Sept 2013 of having polycythemia vera. We are not sure how long he had it but he felt the symptoms as early as 2012. According to his hematologist, there has been no cure yet for this kind of blood abnormality, ( known also as blood cancer) but he can still live a longer and normal life, as long as he takes his medication and his blood is monitored every week at the start, then every 2 weeks. He used to have phlebotomy every month for the last 5 months but now his blood platelets has been down significantly from millions to very close to normal and didn't have phlebotomy last month. He is taking 4 tablets/capsules everyday and 1 of it is not available in the pharmacy but only in an exclusive drug dealer that his doctor had recommended. He is getting better and better.

Hi'

I am 54 yeras old. PV was diagnosed about 15 years ago but symptoms started at least 20 years ago. Started with Blood letting & Aspirin only and latter on continued with combination of that & Hydrea. Due to frequesnt blood lettings (~1 per month) my Iron levels are keptvery low (5-6 intead of min of 21). So far so good !!

I would love to join your fb page I was diagnosed about a yr ago my mom lived w, it for about 10 yrs but passed away at 62 from leukemia shelly darner-fields

I have been recently diagnosed with PVC.

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I was diagnosed eight years ago. When I  first started treatments I was having a phlebotomy every 3 weeks and after six months every month.  As of this year I am now on a twelve week schedule. 

Last year I  had a port installed to make the process a bit less stressful.  After eight years my veins had  developed scar tissie which made the process even harder and more stressful.  With the port, the treatments are quick and effortless.  I  wish I had gone with the port sooner.

 

My blood has gotten much better, and, as  some others have mentioned, changing your diet and looking at your eating habits did wonders for my numbers.  I also lost those pesky 30 pounds that I had put on since high school.

 

So my suggesttions:  get educated, change your diet, keep up with your treatments and, consider a port.  You are going to be doing this for a (hopefully) long time!

 

Good luck to all the newbies and for all of us veterans.....share your stories and give them hope

 

 

G Pat

 

 

What is the name of the tablets he is taking?

HI i HAVE POLY V DIAGNOSED AT 48 YEARS OLD. I AM EXTREMELY WEEK AND VERY SHORT OF BREATH ALL THE TIME. ARE ANY OF YOU ON DISIBILITY SSI? I AM HAVING A HARD TIME TO CONTINUE WORKING? THANKS JIM