As we often say at Patient Power, there is no one source for medical information. The same is true when it comes to support for patients. No one organization is THE place to go and has all the answers. That may sound obvious. But just as it has taken a long time to dislodge the “Doctor as God” perception or “I’m the doctor and you’re not” put-down of “problem patients,” there have been some non-profit advocacy groups that have seen themselves as the “be all and end all” for conditions they cover. In both cases, the arrogant doctor and the...

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Thank God television and movie script writers are starting to “get it.” Cancer, “The Big C,” doesn’t always kill people, or maim them, or steal their dreams. Lately there have been new TV shows acknowledging cancer as part of life that many can live through. There’s a new movie coming called 50/50 about a young adult man with cancer (important to acknowledge it in this age group!). I hope he doesn’t die in the end. But from the preview, it’s clear he talks to people about it – including young women he is trying to date. It’s a comedy. On...

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When I was growing up I would read about scientists. I had this image of super smart people in white lab coats being some place far away – untouchable – and hunched behind microscopes. Growing up in the 50’s I thought of Dr. Jonah Salk and what he discovered to wipe out polio. No more pictures of people in iron lungs. Fewer people using crutches or wheelchairs their whole lives. Scientists made it happen. But it was a very long time before I actually knew a scientist. After all, I was a journalism major, right? We hung out with the...

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I speak to people in the pharmaceutical industry much more than folks who develop medical devices. I know how pharma researchers spend years and hundreds of millions of dollars trying to develop a useful, safe new drug that the FDA will approve for marketing. Certainly there are big payoffs, but the road is filled with potholes and trapdoors and the analysis by the FDA is rigorous. But for years we’ve been hearing that it is much less rigorous when it comes to medical devices. Artificial hip joints and stents to open blocked arteries fall into this category. And recently, the...

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I am just back from the Phoenix-metro area. It’s now the 5th largest in the United States and despite home foreclosures, there is still a feeling of growth in many areas. Gilbert, a nearby suburb, has expanded to over 200,000 people and a growing major medical center. I spent several days interviewing patients and staff about the soon-to-open, Banner MD Anderson Cancer Center. The hope is that by bringing MD Anderson’s world-renowned expertise, clinical trials and processes to this new center, cancer care around Phoenix and the southwest will be improved. Look for my video interviews coming soon. But, in...

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It was a bombshell that shouldn’t have been unexpected. Steve Jobs resigning. Anyone who saw him knew he was sick and, just watching him on television, it was obvious to me he was getting sicker. When you get so thin, when your color is not good, when you are probably taking heavy duty drugs that have side effects, you certainly don’t feel good. And when you don’t feel good it is tough to think clearly, and make decisions with certainty. That is not a good thing for the CEO of one of the most successful corporations. It is actually a...

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You heard about it first on Patient Power when, a couple of years ago, we interviewed Dr. Andrew Lowy, oncology surgeon at UC San Diego Medical Center. He explained how some patients with advanced cancer spread in their abdomen could benefit from an open surgery - perhaps as much as nine hours long - where, after snipping out visible cancer - the organs are bathed in heated chemotherapy for 90 minutes. You may recall the story of Jennifer Ambrose, a young mom from suburban Chicago, who developed cancer of the appendix. She tracked down Dr. Lowy after spotting him on...

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You have heard it countless times, “The War on Cancer.” President Nixon announced it. The National Cancer Institute has spearheaded what TV and radio commercials always talk about as “the fight against cancer.” Singular. But we really need to start thinking about it as a plural.  Wars on cancer. Fights against cancer. Taking it one step further, we need to see each person’s fight as an individual battle.  Not just individualized to the patient’s spirit or age or sense of hope, but individualized to his or her particular biology, matched up with the specific cancer and available treatments. That is...

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There are big companies like Quintiles that run clinical trials around the world. There are local clinics that specialize in clinical trials and make a lot of money at it. There are, of course, pharmaceutical companies and device manufacturers who depend upon the results to gain marketing approval for new products. People in all those groups know a lot about trials. But the perspective that counts is the view from you and me – patients. Most of us do not enroll in clinical trials. We don’t want to get too up close and personal with anything “experimental.” And often our...

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You know I am a cancer survivor – 15 years down the road from a leukemia diagnosis and enjoying a 10 year remission. So whenever something seems weird about my health it’s cancer coming back, right? Wrong! Just how wrong was proven last night. I am writing this from my hospital bed in Seattle. The first symptom of a possible problem came three days ago when I had soreness in my right calf. A pulled muscle? Maybe. But I had not noticed straining it. Back at the gym the next day I had soreness again but thought it was no...

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September 2011
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