Last week I attended the Precision Medicine World Conference in Mountain View, Calif. A few hundred next-generation sequencing scientists, business folks and vendors were there. But I was among the few patients who actually benefited from their work. That's a problem. So is the fact that my wife, Esther, and I led about the only session out of many that featured patients—stage IV lung cancer patients who are alive today because THEY pushed for state-of-the-art genomic testing, so they could get "precision medicine." Both patients, Don and Lisa, would not be alive without that approach. Our session, "How Immunotherapy Saved...

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Born a “sci-fi” fan, I can clearly remember years ago watching movies with all sorts of futuristic gadgets and gizmos that made amazing things happen.  If you believed it all then, we would someday be traveling to other planets, extending our life expectancy, producing fuel from readily available resources, doing surgery without large incisions and with amazingly short recovery times…And sure enough, the future became the present, and many of these far-fetched things have become our reality!  In that mix, there was always talk of scientists somehow unlocking the mysteries of human development, gaining an understanding of what makes each...

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I am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom to impart What I do have to pass along is hope. Such a little word but one that has the ability to change your life. Hope crowds out anxiety and pushes away fear. It fills you with peace and can motivate you. “Where in the...

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Every week for the last few years, I’ve been commuting from my home in the country with my husband to my job in the city.  I wake up at 4:30 AM on Monday and try to get out of the house by 5 AM, so I can try to beat traffic.  It SHOULD only take me 1-1/2 hours, but it has taken me up to 3 hours to go the 70 miles.  Frustrating! Instead of focusing on the time or the traffic, I try to see it as an opportunity to listen and learn something new by downloading books on...

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On March 25, 2016, a catastrophic moment in my life changed everything for me and my entire family—my 33-year-old son, Jordan, was diagnosed with cancer along with severe brain disease of unknown origin. Upon being told the diagnoses, my breathing stopped and my heart skipped a beat as I experienced every mother's nightmare—finding out that your child has a life-threatening illness. As the doctor spoke, his mouth moved but I was frozen in terror, unable to hear anything he was saying, unable to move or articulate any appropriate verbal expression. As he outlined what would surely become a whirlwind year...

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If you are reading this, you are probably what we would call a “powerful patient.” You are engaged, you ask questions, you get second opinions, you stay informed. But, sadly, there are many more people who are not like you and me. They are terrified and depressed about their diagnosis of a cancer or other serious condition, and they want to believe the first doctor they see knows all there is to know and has everything at their fingertips to help them get well, or at least to do the best possible. You and I know it’s not at all...

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"This was me 10 years ago prior to second-line FCR therapy. Dr Sharman’s comments were interesting, but here I am unmutated; 11Q; and it gave me so far a 10-year remission. Ours is such an individual challenge to treat, and I wonder just what would have happened to me if I had not had FCR?? No way of knowing, of course, but at some stage a decision has to be made, and then we live (a positive comment) by it!!" ~Derek Caine Related Videos A Song for Unsung Heroes: Caregivers Singing the "Haemo Blues"

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Teresa Regueiro (@teresaregue) es paciente de mieloma múltiple desde hace siete años. Tras pasar un año duro tras el diagnóstico y un mal pronóstico, decidió involucrarse como voluntaria en varias asociaciones de cáncer hematológico. Hace algo más de dos años fundó la asociación sin ánimo de lucro Comunidad Española de Pacientes con Mieloma Múltiple (@CEPCMM), con  el fin de llevar a los pacientes  información actualizada y veraz de forma constante. En su blog, Conversando sobre el Mieloma Múltiple, da voz a investigadores y pacientes.   ¿Qué es la Comunidad Española de Pacientes con Mieloma Múltiple y cómo trabaja? La Comunidad...

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Cinco años después de la creación de ASACO, la Asociación de Afectados por el Cáncer de Ovario, la presidenta de la organización, Charo Hierro, nos explica el trabajo que llevan a cabo y los retos y objetivos que les esperan.

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Dear Patient Power friends and members, Esther and I are really excited about 2017 as we are making great efforts to improve what we do, with several partners, to help people with illness live better and live longer. And, as you know, we often report upbeat news that gives us hope. But sadly, too often we lose people we care about despite the best efforts of dedicated doctors and nurses and scientists who develop new medicines. Recently, we lost Voncile “Peppe” Fryou to myelofibrosis. Peppe, 60, from Louisiana was a bright light connecting with others online and sharing real hope...

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Page last updated on March 7, 2017