Like any cancer survivor, I worry about what’s next. Am I bruising too much? Is this little “twinge” something serious? Is this just a cold, or could it be pneumonia? My wife thinks I am a hypochondriac, but she acknowledges that it can be understandable. After all, I was first diagnosed 18 years ago. I stuff the fears down, but they are there. And that’s why there’s a trend on Facebook that scares me: patients who are not doing well post some of the most gruesome photos. Do we really need to see? A couple of years ago, I wrote...

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For most cancers, there are no longer “one-size-fits-all” treatment plans. And at the recent American Society of Hematology meeting in San Francisco, we heard not only that this is changing but that it is changing quickly. I almost feel sorry for the growing ranks of “nurse navigators” who will have many long nights studying just to keep up. Monoclonal antibodies for myeloma, new medicines for CLL, some people stopping medicine for CML, many trials in MPNs, breakthroughs in lymphomas and some acute leukemias. Add to that the looming “immuno-oncology” and how experts are saying it could revolutionize cancer care. How do we...

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El doctor Josep M. Ribera es el jefe del Servicio de Hematología Clínica del Instituto Catalán de Oncología (ICO) y un especialista en el tratamiento del cáncer en personas infectadas con el virus del VIH. En esta entrevista nos explica qué tipo de cánceres son más frecuentes en estos pacientes, cómo se pueden prevenir y cómo se enfoca el tratamiento. El doctor Josep Maria Ribera. Foto del Institut Catalán de Oncología. ¿Las personas portadoras del virus VIH tienen más posibilidades de tener algunos tipos de cáncer?   Efectivamente, las personas infectadas por el VIH tienen un riesgo significativamente más alto...

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  Andrew Schorr at ASH 2013 This is a pivotal time for many, many people living with blood-related cancers like chronic leukemias, multiple myeloma, lymphomas and myeloproliferative neoplasms (MPNs). We have been calling most of these “chronic cancers" lately, because new medicines have been coming out this year with many more in late stages of research. The hope is there is—or will be—a medicine, or combination of medicines, for you and me (I have two of these conditions) that will allow us to live longer with few side effects. If we are lucky, there may be a progression of ever...

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Patients connecting at a recent Patient Power event It was a Harvard Business School professor, in 1997, who coined the term “disruptive technology." Thanks to Clayton M. Christensen. He understood that new things can shake up an industry or create a new one.  The PC, cell phones, cloud computing are great examples. But in pharmaceuticals, diagnostic testing and, more broadly, in healthcare in general, I would suggest that today’s best example is a human being, the patient. The patient is starting to shake up these industries, because they are getting smarter about their diagnoses, what tests are required and when, what the results mean, what...

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I have been living in Spain for almost three years. As an “e-patient” from America, I have noticed that patients, in a largely government-run system, are less outspoken and seem to be less “self-advocates”. I have found the doctors to be generally good, as they are in the states, but, in my opinion, it still benefits the patient to be more engaged, more educated about their condition, and more empowered. In cancer I think that is especially true because things are changing: a lot of research is underway, treatments are becoming more personalized, and there is more support for other...

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As a patient navigator, young adult cancer survivor and former caregiver, I know what the term “empowered patient” means. It’s a concept where knowledge about your disease is powerful, and advocating for your own quality healthcare aids in your survivorship. There are a checklist of questions I can arm you with along with disease related information and education—all of the things that make you a more informed patient. And while all of those things are relevant and even critical, the fact of the matter is all the tools in the work shed won’t ensure that you can build a house...

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En la jornada para pacientes de mieloma múltiple que celebramos el 11 de octubre en el Hospital Vall d'Hebron de Barcelona pudimos comprobar que los pacientes están hambrientos de conocimiento sobre su enfermedad. Y que los médicos prefieren trabajar con un paciente informado, pues les pueden explicar mejor cómo le funciona el tratamiento, qué efectos secundarios está sintiendo...   En este vídeo -realizado en inglés y en español  para poder promocionarlo a nivel global- podéis ver las sensaciones de los pacientes sobre la jornada, la opinión de los médicos y cómo pudimos cumplir con nuestro objetivo: empoderar a los pacientes con...

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Caregiver and Patient at the Patient Power Myeloma Forum in Barcelona When I was first diagnosed with chronic lymphocytic leukemia (CLL) in 1996, I just wanted the doctor to heal me. I dreamed of a magic wand that a healthcare provider could wave that would take the disease away as suddenly as it had appeared for me (even though it had probably been developing for years, I just didn’t know it!). No such luck, of course. So what followed was a total disruption to my life. Fear, sleeplessness, psychological counseling, and a long procession of diagnostic tests and years of...

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My name is Margo, and I was diagnosed with PV in late spring of 2014.   Probably like many of you with an MPN diagnosis, it was incidental.  I was attending a special event and did not feel well.  This led to a series of steps, which brought me to Dr. Brady Stein, a wonderful doctor.  I came to our first appointment with a single-spaced narrative and set of questions about red blood cell production.  He leaned forward and told me the study of MPNs was his life’s work and that he would take good care of me.  And as I...

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