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...

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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...

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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...

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On location at a medical meeting in Barcelona, Spain, Patient Power Founder Andrew Schorr shares his views on the importance of an ongoing conversation between patients, doctors and the pharmaceutical industry so that patients can be an active player in their care. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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For the second year in a row, M and I were lucky enough to attend the Living Well with MPNs event held in Chicago. This event was hosted by Northwestern University, Robert H. Lurie Comprehensive Cancer Center, presented by Patient Power. Just like last year, the event started with registration, a little networking with other patients, then into the meeting at 10 am. As the name of the event suggests, the focus is on encouraging us to live our lives as well as we are able. In order for anyone to do this, they need to be willing to seek...

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On Sunday, June 28th, our organization, LUNGevity Foundation, teamed up with the Patient Empowerment Network and the Robert H. Lurie Medical Research Center of Northwestern University to host a lung cancer town hall meeting. The room was full with over 100 lung cancer survivors and caregivers, while dozens more watched live online from across the country. The meeting was meant to be educational—a chance for survivors and caregivers to learn more about their disease, what the future looks like, and how medical professionals work with their lung cancer patients. Sitting on the panel were experts in the field of lung...

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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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