When I was diagnosed with my first cancer in 1996, I quickly learned that the “experts” who could best help me were not just the medical professionals, but also fellow patients, caregivers and patient advocates. My diagnosis led to building an entire community of people, most of them strangers at first, who would have a profound impact on my life. That sense of community, as well as the confidence and hope it brings to you when facing cancer, are behind everything that Patient Power does. In other words, the “power” behind Patient Power has always been collective. Through our conversations,...

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Photo courtesy American Society of Hematology Promising new cancer treatments are big news, especially for affected patients, and something I write about often. Many will be discussed in December in New Orleans during the big medical meeting focused primarily on blood-related cancers, the annual ASH or American Society of Hematology meeting. Doctors will be “excited” about what could be next for patients and we’ll interview them for the most current information for programs like the one Patient Power just released with Professor Peter Hillmen on the experimental drug idelalisib for chronic lymphocytic leukemia (CLL).  It sounds good but it is...

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There was tremendous excitement last year at the American Society of Hematology (ASH) meeting about promising new leukemia drugs. One drug for chronic myelogenous leukemia (CML), ponatinib (brand name Iclusig) made big news as leading experts shared later stage study data showing great effectiveness for patients with the life-threatening T315i mutation and for those who did not respond to already approved drugs for CML. The buzz was that ponatinib might not only help the few patients with T315i and who were almost out of options, but also a bigger group of patients earlier in their CML journey. Within weeks the...

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Exciting changes are ahead at Patient Power! They will deepen our commitment to patient communities, in several cancers, so I wanted to share with you what we are doing, and why, and provide an early “sneak peak” too. Eight years ago, when I founded Patient Power, I wanted to spark public discussion and education to help empower patients with serious illness. First on radio, and then on our website, I soon hosted 10 or more medical interview programs a week. Then we grew, adding producers, additional hosts and contributors. Since 2005 our original content has mounted up to more than...

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A diagnosis of cancer is the last thing anyone wants to hear. It can be a struggle to understand what you’re dealing with and sometimes it can seem like you need a PhD to understand what to do. That's because cancer is increasingly complicated. It's not just that you have abnormal, malignant cells growing in your body. It's also about what type of cells they are, how many, where are they going, and whether they have a vulnerability that can be exploited by one medicine or many – and dosed in which order? Whew! Patients used to just rely on...

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There's a time gap between when cancer treatment and research news breaks and when it's in practice. Depending on where you live, the pace could be slow, slower, and a lot slower. Your local doctor was probably not the newsmaker, and may well have missed the medical conference where the new developments were shared. And when the news reaches your doctor, through a medical service or journal, it may be too little – or even too commercial – to convince your doctor to do anything new. So the question is, does that process leave patients in the lurch and what...

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Dr. Neil Kay from the Mayo Clinic discusses advances in CLL treatment with Andrew Schorr at the iwCLL 2013 conference in Cologne, Germany. Staying current on developments in cancer continues to mean a lot of travel, and more time to work on reading the biography of cancer, "The Emperor of All Maladies." I wish I had more time for this big book, but I am always sure to read it on planes during those times when everything electronic has to be turned off. One thing the book has educated me about is the number of the twists and turns in...

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In the hustle and bustle of our daily lives we don’t tend to give our time to thinking about the future. But the other day a simple breakfast meal led to doing exactly that. I was with an aging cousin, Walter, a former expert salesman and investment advisor who has become infirm in his senior years. I knew he had several doctors and took medicine. It wasn't until breakfast time, however, that I realized how many medicines Walter took - and I was bowled over. There at his place setting next to his coffee and daily sunny side up egg...

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Greetings from the very top of the hill across from the cathedral in beautiful Todi, Italy, in Umbria, where we are visiting our Internet leukemia patient-advocate friend, Felice Bombaci, and his family. Felice takes imatinib pills for his CML and leads a full life. I remain in remission with a three-drug combination for my CLL and now daily ruxolitinib pills for my second cancer, myelofibrosis. Both of us are living full lives. And Felice and I agree that living for today is most important, with the hope for continuing good health for the future. The key to that long, full...

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Linda Lewis, former editor of More and Today's Parent magazines, Canada.(Photo credit: John Van Der Schilden) JOHN VAN DER SCHILDEN) The world lost a bright star in journalism recently when Canadian Linda Lewis, former leading magazine editor, died at 52 from complications of myelofibrosis. In reading her obituary it's clear she was a warm, caring person – mother of two – who loved life and, as the cancer diagnosis set in, the spontaneity of enjoying the moment. Linda's myelofibrosis had transformed into acute myeloid leukemia and that took her life. But one wonders if the stage was set years before...

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November 2013
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