Cuando hace 30 años Montserrat Domènech quiso saber si podía tener un hijo aún sufriendo cáncer, lo preguntó por carta a unos oncólogos de Estados Unidos. Nunca le contestaron y ella tiró adelante con su embarazo. Hoy, con un correo electrónico o incluso un Twit hubiera contactado de forma inmediata con esos oncólogos al otro lado del Atlántico. Domènech, presidenta del Grup Àgata -organización que ayuda a mujeres con cáncer de mama-, explicó esta anécdota en la mesa redonda sobre pacientes y tecnología organizada por Health 2.0 y laFundació iSYS, que tuvo lugar esta semana en la Academia de Ciencias Médicas (Barcelona). Teresa Bau, responsable de Comunicación de...

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A few weeks ago, I wrote a blog called You Only Live Once, which was the attitude we embraced when my husband and I decided to grant our children’s greatest wish—a dog! This was a big decision for us—and one we didn’t take lightly. And it’s a decision, I am happy to report, that I am really glad that we made! We had been telling the kids for weeks that it was too soon for us to get a dog—they weren’t old enough yet and just weren’t ready for the kind of responsibility that comes with having a pet.   Up...

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Aunque cada vez tienen más voz en el sistema sanitario, los pacientes aún no son escuchados lo que se merecen. El próximo miércoles 20 de enero en Barcelona, ellos tomarán la palabra. En un acto organizado por Health 2.0 Barcelona y la Fundación iSYS, pacientes y asociaciones explicarán cómo la tecnología ha cambiado su forma de gestionar la enfermedad, qué opinan de las aplicaciones móviles de salud y cómo usan las redes sociales para su beneficio. Hablarán Nuria Zuñiga (@tulupus), paciente de Lupus y bloguera; Domingo Escudero (@escuderodomingo), neurólogo y paciente de encefalitis autoinmune; y representantes del Grupo Agata (@agataenmarxa) y de...

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The holiday season is a time for friends and family to get together and catch up. Those with chronic disease, such as CLL, inevitably are asked about how we are feeling. When I am with family and friends, people seem surprised when I give a quick update and then really want to move onto other topics. On the one hand, I am thankful and fortunate to be surrounded by real friends and a loving family who care enough to ask. But by the same token, I suspect most people in similar shoes don’t want to be defined by their ailments,...

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Fatigue is the most frequently reported symptom of cancer. It transcends across all cancer types and greatly interferes with routine day-to-day activities. Fatigue is the second topic in my four-part series of topics addressing the challenges that cancer survivors face after treatment to find intimacy again. The first topic of the series covered communication. Today, we’ll discuss fatigue and loss of interest and how they affect cancer survivors' intimate relationships. Fatigue experienced by a cancer patient is extremely different from the fatigue a healthy person would describe. Their fatigue could often be resolved with a good night’s sleep or an...

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I was asked that question recently at a patient advocacy forum. My immediate, knee-jerk reaction was “No.” Upon reflection, however, the answer is more complex and nuanced. I had responded initially “no” because of the way I am able to live my life. I was diagnosed with CLL 9-½ years ago. I’ve been treated twice, once in 2006 with CVP + R (cyclophosphamide [Cytoxan], vincristine [Oncovin], prednisone [Deltasone] and rituxamab [Rituxan]), then again in 2010 with FCR (fludarabine [Fludara], cyclophosphamide and rituximab).   Since 2010, I haven’t needed treatment. The only pill I take is vitamin D3 when I remember. I...

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GEPAC (@GEPAC_), el Grupo Español de Pacientes con Cáncer, la principal organización de pacientes de cáncer en España, celebrará su congreso anual del 27 al 29 de noviembre en Madrid (hashtag #congresoGEPAC). Serán tres días de charlas (ver programa) para que los pacientes de todo tipo de cáncer tengan más información sobre su condición, tanto a nivel científico como a nivel más práctico, con talleres de actividades como relajación, maquillaje, inteligencia emocional y talleres para sus familiares. Una imagen de la web del congreso de GEPAC El congreso también incluirá una jornada enfocada a estudiantes de Medicina y Enfermería en la...

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Each year, more than 40,000 Americans are diagnosed with pancreatic cancer and 95 percent die within 12 months. Many victims have been celebrities such as Steve Jobs, Patrick Swayze, Jack Benny and Michael Landon. Because survival is limited, and treatment options are few and often ineffective, patients and their families often regard pancreatic cancer as a death sentence. Too often the disease also brings hopelessness and despair. I am a two-time survivor of pancreatic adenocarcinoma. Surviving a second bout is rare, and no statistics are kept. I have ridden the emotional rollercoaster frequently encountered over the long course of treatments...

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[Editor’s note: In this blog, Denise Rodgers shares the lifestyle approaches that have helped her feel her best. Patient Power recommends that readers please consult first with their doctor before incorporating any lifestyle changes.] My name is Denise Rodgers, and I was diagnosed with CLL in July 2001. I had my personal disaster just a little more than two months prior to the infamous September 11. And for a while I took my personal news just as hard. I felt doomed, certain I was not to live a normal life span at best; worried that my end was near and...

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My name is Ruth Schorr, and my parents, Andrew and Esther Schorr, are the founders of Patient Power. I have grown up around Patient Power and its amazing team, and I have also grown up with cancer as a prevalent part of my life. Growing up with a parent who has been diagnosed with cancer isn’t easy. You are affected by the situation directly, although you are not always old enough or emotionally ready to process the situation at hand. In my case, my father was diagnosed with chronic lymphocytic leukemia (CLL) when I was only 4 years old. At that...

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Page last updated on April 25, 2019