Very recently a review committee in the U.K. made a preliminary recommendation that the government's National Health Service should not pay for a newly approved medicine that greatly reduces or alleviates the symptoms of myelofibrosis (MF). MF develops when there is progressive scarring in the bone marrow that affects one's ability to make blood cells. Other organs like the spleen and liver try to take over the job and they become enlarged. Along with that, a patient experiences itching, fatigue and weight loss, as well as general malaise and suffering. While a new oral medicine, Jakafi in the U.S. and...

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In July, 2009 Jose kissed his wife and went out for a bike ride on a gray Seattle day. He never was able to return home. A van hit him. And while he had enough of a flicker of life to be brought to the hospital, he died. And his wife, Chanel Reynolds , mother of two children, had no clue about many of the necessary details of their life together. She didn't even know the password to his mobile phone, let alone insurance and financial details. She was unprepared for the death of a loved one, not just emotionally,...

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I have become very involved in my son's school here in Barcelona and go there two mornings a week to take a Spanish class. I am usually there early and, because people are checking out patientpower.info, some folks are beginning to speak to me about medical topics. Last week came word a 10-year-old fifth grader had been suddenly diagnosed with a large tumor on one of her ovaries. Everyone was in shock. On the very day the girl was having surgery to remove the tumor her father called me looking for guidance. My advice was a reprise from what is...

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How many stories have you read or seen lately about Lance Armstrong? As a cancer survivor I am ready to move on. He lied and he bullied. He beat cancer – with the help of sound medicine and maybe good fortune. I wore one of those yellow bracelets for more than 10 years as an affirmation of living beyond cancer. I don't wear the bracelet anymore but I still respect the LIVESTRONG Foundation even if I don't respect Lance. Rather than saying one more word about a disgraced athlete who shows cancer patients come with a wide range of morals,...

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When someone is stricken with a serious illness their world is rocked. I know, it has happened to me with cancer twice. And, in this age of social media, you might well go searching online for information and posting your story of fear and uncertainty. The health-related communities are full of introductions from newly diagnosed patients or their loved ones. The community I found was lifesaving. But I wanted to make a comment and tell a story. The comment: when sick people do better, or even get well, they go on with their lives and they may no longer post...

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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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