Spoiler note - this blog is a call for action. Read on only if you are going to act! Life is filled with serendipity. Paraphrasing Forrest Gump “…It is a box of chocolates; you never know what you are going to get…..” Along those lines, I was most fortunate to fall into an irreverent, eclectic group of people when taking the scary step of moving to Pittsburgh to attend, and subsequently work at, Carnegie Mellon University. Our collective predilection was to roll up our sleeves, work ridiculously hard, and then play even harder. During that time, I developed a lifelong...

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Those of us who have loved ones who have dealt with a cancer journey are always "along for the ride.”  The emotional and physical roller coaster is never exactly the same for any two people, but the road is always bumpy, often filled with great challenges, fear, tears…the works…But those who travel it together most often find their inner strength together and reaffirm their deep love for each other along the way.  And if a care partner (or caregiver) is a medical professional, the process of giving of their expertise and compassion is given selflessly and is priceless.  In some...

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In December, after the American Society of Hematology (ASH) meeting in Orlando, Florida, I wrote a blog on Patient Power called “Impatient Patients”. I highlighted four patients who aren’t sitting around, waiting to be told about the next best treatment for their blood cancers. Instead, they are mobilizing networks of patients to push for more effective medicines, urging participation in clinical trials, and raising money to direct research beyond the efforts of pharma and government. On September 7th, I had the opportunity to deliver the message about “impatient” patients to a room filled with clinicians, statisticians and FDA experts. The...

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Natalia, doctora en Historia de la Ciencia y en Filología, explica su visión como mujer con cáncer y los prejuicios que rodean esta enfermedad.

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[Editor's Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now?” campaign, we get an opportunity to check in and hear updates from Patient Power's amazing community members. This week, Jan Woolley shares with us her latest news.  For previous conversation with Jan, click on the links below.] Powerful Patients Living Well With Myeloma Jan Woolley: Living a Full Life With Myeloma   I am happy to provide an update about my experience with multiple myeloma. I was initially diagnosed in April 2007. At my diagnosis, I was told that the median life span...

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For the third year in a row, our Patient Power team held a day-long retreat at the Willows Lodge near Seattle. We always do it in late August when the weather is beautiful, and it gives us a chance to reflect and plan. Many of us have children, so kicking off a new “school year” always seems appropriate. This year, our discussion included in-person presentations from team members from Boston, Charlotte, Houston, California and Seattle as well as live presentations from others in Barcelona, London, Phoenix and Boston. The goal is simply how to help families affected by cancer worldwide...

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(or How to Financially Advocate for Yourself Without Going Totally Crazy) FRUSTRATING! I am sure most of you have had difficulties dealing not only with your insurance company, but also your doctor’s office, the hospital and their doctors. I am going to try to help you out here with what I have learned and how I am dealing with all those different entities. I will try to keep it clear and easy. You may contact me for more detailed explanations and understanding for why I do what I do. [See comment section at the end of this blog]. There are...

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I’ve applied to a lot of companies over the years for a variety of jobs. You know how it goes. They tell you what type of superhero employee they’re looking for, and you tell them how your particular superhero cape comes in every size, shape and color that they happen to need. You land the job and after a short period of time, you’ve conquered the learning curve, multitasking like a pro. Everyone relaxes, and you start arriving home most evenings at a reasonable hour. Even when you love your job, there still is that moment each day when you...

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[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. In this blog, Diana Riley shares with us her latest news. For previous conversations with Diana, click the link below.]  Diana’s Story: A 17-Year MPN Journey “…For the times they are a-changin’.” Bob Dylan wrote those words in the 1960s and, though change is never easy, those of us with MPNs are happy to see change. When I was diagnosed with essential thrombocythemia in...

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[Editor’s Note: This blog has been reprinted by permission. It was originally printed in the publication, Patient Resources.] In March 2008, at 52, Randall (Randy) Broad was active and in good health, except for a nagging cough. Chest X-rays and an endoscopic examination showed nothing and, according to his primary care physician, his symptoms didn’t warrant more expensive tests such as an MRI or CT. It wasn’t until he coughed up blood nearly two years later that he was sent to a pulmonologist for a bronchoscopy. A 3-centimeter mass in his lower left lobe was hiding behind his heart, and...

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