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...

Read Blog

[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...

Read Blog

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...

Read Blog

¿Habéis probado alguna aplicación móbil de salud? Son apps destinadas a mejorar nuestra salud de varias formas: motivándonos a hacer ejercicio o a mejorar nuestra dieta o bien ayudándonos a controlar y hacer un seguiminento de multitud de enfermedades, como pueden ser la diabetes, la hipertensión arterial, la depresión... También existen apps enfocadas al diagnóstico, como las dermatológicas. Pues bien, existen miles de apps en el mercado, pero no todas son de fiar. Las hay que tienen intereses claramente comerciales y que no aportan beneficios al usuario, mientras que otras pueden incluso poner en riesgo la salud del usuario. Imaginaros...

Read Blog

My adventure in the world of CLL started in February 2013, when during a routine physical, my physician noted that my white counts were “elevated.” Having a rather offbeat sense of humor, he was certain that his blood analyzer was faulty, and a second blood test would most definitely prove that. Well, the exact same numbers came up, and while he insisted that his machine was clearly broken, perhaps I should go see a hematologist. After a battery of unpleasant tests and trips to multiple hematologists, I was diagnosed with stage I CLL in June 2013 and clinically have been...

Read Blog

Randall Goskowicz and Zoey I was reflecting on the heroic ways my fellow patients go about their day and struggle not to be defined or confined by their disease. We all have our secret methods of coping, which—in speaking to my fellow clinic patients—run from changing socks after a night sweat to the overall benefits of chocolate. I would be holding back if I didn’t reveal my personal therapist: my dog Zoey. I regret to expound in this manner and make extensive apologies to non-dog people who I don’t get the connection between Homo sapiens and Canus familiarus. Still, I...

Read Blog

The other day my hematologist said to me, “You’re boring.” That may be the nicest thing anyone has ever said to me. His “compliment” came nine years after I had been diagnosed with CLL, chronic lymphocytic leukemia. On this visit, my blood numbers looked nearly perfect. I could exhale for the next few months until it was time to return to check those counts again. July 2006 marks my “before” and “after” moment with CLL. On July 3, I was being checked for what I thought was a stomach issue. On July 5, I was told that I probably had...

Read Blog

Odds are you are traveling sometime this summer. When I travel my favorite thing is to chat with people and listen to their stories. Typically, when I share what I do—telling stories for cancer patients and family members—more stories are served up to me. Right now, Esther and I are in Ireland. I wanted to share some of the stories I’ve heard here that cover everything from epilepsy, to Hodgkin lymphoma to living with CLL long-term and newly diagnosed. There are common themes across all of them. Michael Rynne and Andrew Story #1 - Dropping into the Whiskey Fair in...

Read Blog

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...

Read Blog

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...

Read Blog
more reset
Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on April 25, 2019