The news around leukemia has been so positive. The recent American Society of Hematology (ASH) meeting in Atlanta was buzzing about it. New powerful, promising medicines for CLL and CML and better approaches for acute leukemias too. Just before ASH I conducted a lengthy interview with Randy Shirley, 55, from Marysville, Washington, north of Seattle. Patient Power senior producer, Autumn Eadon was on site as we discussed topics including his CLL diagnosis three years ago, the fact that standard therapies didn't work for long, his hospitalizations, his entry into a new phase I clinical trial (ABT-199), and his devotion to...

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Andrew Schorr shares his optimism for patients with leukemia, lymphoma, myeloma and other blood cancers, while attending the 2012 American Society of Hematology meeting in Atlanta, Georgia.

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Is chemo dead? Maybe not yet, but in some diseases it is fading fast. In 2000 I was one of the early patients to receive FCR for chronic lymphocytic leukemia (CLL) in a phase II trial, and thousands have followed. The F and the C are chemotherapies and they are not kind to your body. Many patients, including me, have received a long remission and we are, of course, very grateful. But others have not done nearly as well. So the search for better, less toxic cancer treatments has continued. Now the research appears to be paying off. As we...

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I had a weird experience yesterday. I flew from my home in Barcelona, Spain, changed to a bigger plane in Paris, and flew to Atlanta where the American Society of Hematology (ASH) annual meeting is taking place this weekend and into next week. On the Paris to Atlanta flight the 300 or so seats were mostly filled with physicians and researchers devoted to understanding and curing blood-related cancer. Over a nine hour flight, I spoke with people from France, Italy, Germany and Austria – all consumed with "beating the beast." It was very cool. I also spoke to one physician...

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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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December 2012
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