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...

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...

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...

Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think. — Horace If you live in the contiguous 48, you know few things are as exciting as freshly fallen snow. I remember as a 4-year-old making my way downstairs from our North Seattle home to fetch Dad the morning paper. Upon opening the door that early December day, I was surprised by the precious little tufts of white floating down to their final destination. I immediately bolted back upstairs, tore into my...

Enric Barba lo tiene claro: "Hay que buscar al mejor especialista en tu enfermedad. El médico que va a congresos internacionales y que está al día de los últimos tratamientos y técnicas". Barba tiene un melanoma en fase III y recibe tres inyecciones semanales de interferón para mantener fuerte su sistema inmunitario y evitar la metástasis. Fue diagnosticado hace un año, después de que un dermatólogo le había dicho que no debía preocuparse por la mancha que tenía en el pecho y que resultó ser un melanoma nodular. Por este motivo Enric está tan convencido que "es indispensable localizar al...

There is nothing like the shock and confusion felt with the words, “I’m sorry, you have cancer.” However, with those words, my journey began. Following 48 hours of exams, tests and scans, I was diagnosed with non-advanced anal cancer. According to my medical team, my physical response to chemotherapy and radiation treatment was similar to that of other patients, but the sexual health side effects realized after treatment surprised them all. I was told on two separate occasions sexual dysfunction would not be an issue. Once I was cancer-free, that was unfortunately not the case. Talking with Doctors About Sexual...

Esta semana hemos estado en el congreso Health 2.0 Europe que se ha celebrado en Barcelona. Es uno de los eventos más potentes en el sector de la salud digital y la innovación y en él han participado unos 500 profesionales. En el congreso se habló de aplicaciones móviles de salud, de Patient Empowerment y de innovaciones tecnológicas para ayudar a los pacientes. En la sesión de Patient Empowerment hablaron dos e-Pacientes de diabetes (Mike Young -@elgringoinspain, amigo de Patient Power- y Anub Zayani (@InsulAngel) y un e-Paciente doctor: el neurólogo Domingo Escudero (@EscuderoDomingo), jefe de Neurología del Hospital Trias y Pujol...

Care partnering is exhausting. It annihilates your days and trumps your sleep. Its paradoxes require the most delicate of balancing acts between negative thoughts and a positive attitude; of knowing when to establish control and when to relinquish it. It even tampers with your feelings of guilt and love. Care partnering can be isolating. My friend and colleague, Esther Schorr, has written beautifully and passionately these past two weeks, sharing a glimpse into her world as Andrew’s care partner, wife, and business partner. Many of you no doubt read between the lines that her words resonated with the life you...

This past weekend Andrew and I traveled to Niagara Falls, Canada to join more than 200 CLL patients and their care partners to learn about the latest developments in treatment from top researchers and clinicians, to find out about clinical trials, and to make connections with others like us as a means of mutual support.  Andrew moderated a patient panel where we heard about the varied experiences of diagnosis “out of the blue,” the trying time that “watch and wait” brings, the tough treatment choices and the ups and downs of getting through treatment, and the inspiring stories of how...

Olga Lamarca es la vicepresidenta de la recientemente creada Asociación Cáncer de Páncreas, que busca representar al colectivo de pacientes de esta enfermedad y trabajar para que se avance en su investigación, además de concienciar a la sociedad de la existencia de este cáncer, uno de los más desconocidos. Ella y la presidenta de la organización, Carmen Delgado, son pacientes, y decidieron crear la asociación porque "no había ninguna asociación representando a este colectivo", nos explica Olga, que fue diagnosticada hace unos dos años y actualmente está en tratamiento. Olga Lamarca. Foto: Asociación Cáncer Páncreas. Por el hecho de ser bastante minoritario,...