When I first posed that question, I thought it would be easy to start a conversation. Yes! Let’s talk about lung cancer—the deadliest, most misunderstood and least funded cancer. But where do I go from there? Jillian was our baby. Even though she had been living and supporting herself in Miami as an RN at Jackson Memorial Hospital’s Neuro Surgical Intensive Care Unit, going back to school and dating. Everything was according to plan. In June of 2012, at age 28, Jillian was told she had cancer. And in July, she was told she had lung cancer, stage IV. When...

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In 2004, at age 44, I was diagnosed with advanced stomach cancer during a preventive health check-up. After surgery, chemotherapy and radiotherapy for about one year, I relapsed in both lungs, which meant further treatment, including three surgeries and chemotherapy. ‘Think positively in every moment’ In 2009, a big, positive change happened in my life. I met a volunteer in hospital; she was diagnosed with non-Hodgkin lymphoma in 2006 and asked me to help her in patient advocacy. Shortly afterwards, we fell in love and started a family: a son, Giovanni, now 5 years old; and a daughter, Petra, now 3 years old. For us,...

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There has been a healthy discussion following my most recent blog entry, and, once again, we have learned much from each other. It's important to remember, first of all, how much we have in common as we progress with our treatments. We are not alone. As I noted in my previous blog, we are often dealing with a nebulous set of symptoms (fatigue, sweats, and decreased endurance) that lead to frustration over what we can no longer accomplish. One of our commenters referred to fatigue in particular as a "life-stealer,” which is the best description I've heard. Can we take...

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Advocates and physicians join forces to educate patients at a recent town meeting. I’ve produced educational programs for patients since 1984, and the amount of support has been very limited year after year. Traditionally, dollars for education have been spent on doctors. But in today's digital world where patients are clamoring for more control, should more resources be moved to more robust programs for patients? I vote yes. Right now, on our independent website, and several others and a wide range of social media, patients are trying to “get smart” to do better with their diagnosis. A recent Patient Power...

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Cuando me dieron el diagnóstico de cáncer de mama, con 36 años, me dijeron que “me había tocado”, y que “no había nada que pudiera hacer, aparte del tratamiento estipulado”. Me costaba creerlo. Un año antes de aparecer el cáncer, estuve embarazada.  Cuando comenzaba mi sexto mes de embarazo, perdí al bebé debido a una infección de placenta. El golpe fue duro, y tuve que poner mucha voluntad para superarlo. Ante situaciones traumáticas mi cuerpo siempre ha reaccionado de alguna manera. Tengo tendencia a somatizar. Por eso pensé que el cáncer tenía que ver de alguna manera con la pérdida...

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Ha nacido la Patient Empowerment Foundation (PEF) -Fundación para el Empoderamiento del Paciente- una organización que ha empezado a trabajar para que todos los pacientes del mundo tengan acceso a las últimas informaciones sobre su enfermedad. Y también, para que se sientan inspirados y acompañados por otros pacientes. ¿Cómo vamos a hacerlo? Proporcionándoles contenidos y herramientas digitales. La Fundación, impulsada por Patient Power, es una organización con vocación global pero con sede europea. Su organización hermana es la Patient Empowerment Network, que trabaja en Estados Unidos con los mismos objetivos: empoderar a los pacientes del mundo. PEF nace con vocación inclusiva: "Queremos...

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I am gratified by the excellent feedback I received from the first edition of this blog. There are so many thoughts I want to follow up on with future discussions. Today, I’m going to continue with my own story as a further illustration of what we all have in common. The first order of business after my diagnosis was to determine the current involvement of the disease and to get a sense of my baseline symptoms. Like most people with a full-time job and kids at home, I laughed when I was asked if I was experiencing fatigue. Yes, I...

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Like every CLL/SLL patient, I have a unique story, and I’d like to share it with you. Perhaps my background as an MD and researcher will permit me to add something to the discussion. I am no expert on oncology as my field is anesthesiology, but I know how to read scientific papers. And I am currently in an experimental trial, so that may be useful to other patients. I am 51 and was diagnosed with SLL/CLL on May 1, 2014 after I noticed an increasingly firm lymph node under the angle of my jaw. Coming close on the heels...

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                         Friday 24 July 2015 6 PM - 8:20 PM London Time 10 AM -12:20 PM Pacific Time, 12-2:20 PM Central Time, 1-3:20 PM Eastern Time Where: Online via Zoom, a free video conferencing service Research into the treatment and understanding of myeloproliferative neoplasms (MPNs), a group of diseases that includes essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF), is evolving at a record pace. It is vital—now more than ever—for patients and care partners to stay informed. Join us online on Friday 24 July, as MPN Voice hosts a town meeting in London, UK. You’ll hear about...

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Jillian at work For 10 months, I didn’t want to talk. When I did, I asked questions—lots of questions. I was better at note-taking and writing to myself than talking. As a daughter, wife and mother, I had different voices: “What time is your doctor appointment, Dad?” “How was your day, honey?” or “Did you get all your homework done?” I had never been an advocate in the sense I am today. In July 2012, at age 28, my daughter Jillian was diagnosed with stage IV lung cancer, adenocarcinoma with metastases. For 10 months, I didn’t want to talk about...

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