Recently I attended EMUC2012 in Barcelona. The acronym stands for European Multidisciplinary Meeting on Urological Cancer and it draws urologists, medical oncologists, and radiation oncologists from Europe and the U.S. The first day was devoted to prostate cancer and we attended at the urging of Patient Power’s partner, The Prostate Net. It’s led by former corporate executive Virgil Simons, who was treated for prostate cancer 16 years ago. Also attending was Eric Briers, one of the leaders of Europa Uoma, the consortium of prostate cancer patients’ organizations in Europe, and a patient treated 10 years ago. All three of us...

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Most of us at Patient Power have been devoted to patient education for many years. My wife Esther and I produced our first patient video in 1984; one of the first to acknowledge a patient's fears and discuss the emotional side of illness rather than just being a dispassionate discussion of a medical procedure. We were also ahead of others because we always featured real patients and family members and never actors or dramatizations. Of course, since then others in the the medical communications world have caught up. Many are still off track in another regard, providing too much information...

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When you’re diagnosed with cancer, your first job, and that of your medical team, is to beat the disease. If it can't be cured, you bop it on the head and knock it back so you can live your life. I always see that as the "whack a mole" approach. It has worked for me for more than 12 years since I was treated for a blood cancer, chronic lymphocytic leukemia (CLL), in a clinical trial at MD Anderson Cancer Center in Houston. I learned a lot from the experience, and even wrote a book, The Web-Savvy Patient, to help...

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It’s hard to imagine how tough it can be to struggle without power, services, gasoline. And to not know if things will ever be normal again. How to get food, shelter, or even try to work. How to get medicine. And how to deal emotionally with the devastation. I am a New Yorker at heart, having grown up in Westchester County just north of the city, and then in Manhattan. My relatives are all around there. Their experience has been variable. Some with power, some without. Some able to work, others not. But fortunately, they are safe, as is their...

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As you may know, I have been living in Barcelona, Spain since June in an effort to help my family get a heavy dose of being "citizens of the world." We're loving it because we found our thinking to be too insulated living on an island next to Seattle. Now, as we meet new people from many countries, attend international conferences, and just pay attention, we are, as we hoped, broadening our perspectives. One area of discussion with patient-advocates here is how does a cancer patient get the very best care no matter where they live? Remember, this is in...

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For years cancer survivors rode along with Lance Armstrong, the phenomenal cyclist. Many of us wore the yellow bracelets of the LIVESTRONG cancer charity. I went through several until the last one broke a year or so ago. I was ready to get another one. But now Lance, a man who overcame metastatic testicular cancer and reached the pinnacle of sports success, has disappointed us all. The world cycling organizations have concluded he cheated, that he doped his blood to enhance his performance and gain an edge over others who played by the rules. As I write this, he has...

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I've been thinking a lot about television anchors and personalities. As they get older they encounter health issues, like the rest of us, and they get publicized because we think we know them so well. Is this helpful for our own health or does it sometimes go too far? Lately, there have been rumblings of criticism of ABC News and the producers of top-rated "Good Morning America" because they have focused so much on the bone marrow transplant for myelodysplastic syndromes (MDS) of their affable anchor Robin Roberts. When Diane Sawyer and George Stephanopoulos were at her bedside on TV,...

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I have always been struck by the development of the field of medical oncology. It's really not that old a specialty even though cancer has been around for eons. It used to be that surgeons cut out what they could when you were diagnosed with cancer. And after a while most people died from their disease. Then chemotherapy came. And people lived longer, not always better. Some were cured. Sometimes the drugs caused second cancers. Now we have many, many new "targeted therapies." And the field is changing rapidly and complexity of therapy is increasing. I have had a strange...

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This month (September) is Blood Cancer Awareness Month. It's pretty personal for me since I have lived with chronic lymphocytic leukemia (CLL) since 1996. When I was diagnosed it was difficult to find the information I needed, and that was one of the key reasons I founded Patient Power. Along the way I have met and worked with some incredible fellow “blood buddies” who are living with conditions such as lymphoma, myeloma, chronic myelogenous leukemia (CML), myelofibrosis and more. Many are not only “powerful patients” but are also powerful patient advocates who have founded, run or contribute to leading organizations...

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If you travel a lot, or you move to a new country as I have, you notice differences in people. Are people thinner than back home? Do they eat healthier food? Do they walk more and use their cars less? Do they smoke? As a reader of my blog you think about health issues. You are well aware of how personal decisions and lifestyle choices have a lot to do with your longevity and your quality of life now and in the future. So do you say anything when you see people who are very much harming their health? Here's...

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November 2012
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