Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,30083,0.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ What medications are you taking? What other changes are you experiencing in your fatigue level? Focus ability? My husband was just diagnosed with Polycythemia and he is diabetic and had a mini-stroke 2 weeks ago. MarciaKa Sat, 24 Jan 2009 00:00:00 GMT Your concerns about your relative are valid, but certainly not as serious as you suspect.Your Mother is righter than are you. But, it's a guess as they estimate only about 5 in a million have polycythemia vera.P-Vera is a blood disorder. Oncologists are also hematologists: blood docs, that's why she's been sent to one. I've been seeing a SEFlorida doc for about the 15 years I've had P-Vera. I take my meds, stay away from red meet and leafy greens, make sure there's little as possible iron in what I eat. I live every day to the fullest, as I did before diagnosis. My doc brings me in about every 10 weeks. Sometimes a 'blood suck' is called for. The blood is drained and thrown away. More often than not, it's just diet and medicine. P-Vera is from a mutated gene. Just kinduva shows up one day.  With an orphan drug as we have, the internet can do more harm than good. I went to a symposium in NYC  2 years ago. Very interesting. Two of the brightest minds in the field argued about the treatments they use. The doc who found the mutated gene was there too. The itching is the worst part of me. I've adjusted to not getting wet during shower and exercise; umbrellas and rainwear; towels in the car.Rest assured you Mom should be fine with a good doc. As for the gene having been found: there are drug tests in the US and people tests in France going on right now. The experts believe the drug that can stop the disease from going forward will be available in <3-5 years. Oh, make sure Mom had a really good eye exam. The eyes can be affected by polycythemia vera.Good luck.--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--   promote Sun, 09 Nov 2008 00:00:00 GMT My Mom has just been diagnosed with Polycythemia Vera, although she says the Dr. says it is nothing to be very concerned about.....I don't believe her, I s this some sort of Cancer? Her Doctor for this is a Cancer specialist, and she was told that she has to start taking radiation pills?Does anyone else know anything about this? I have also been told that this is some form of Leukemia?I am in California and my Mother is in Florida, I wish I could personally talk to her Doctor to get the better story, but for now all I have is the internet to try and find out what my Mother has, Your help would be appreciated.Thank You RR1979 Sat, 08 Nov 2008 00:00:00 GMT