September 28th, 2011 by AndrewSchorr in Opinion
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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 “100,000 pound gorilla” organization, neither took what I call the “big tent” view. In their view, they were the tent and there was no room for anyone else. That’s never been our view and I wanted to tell you how we are celebrating our relationships with a multitude of partners, many of whom are becoming friends. Read more »
*This blog post was originally published at Andrew's Blog*
September 23rd, 2011 by AndrewSchorr in Opinion
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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 Showtime on cable TV there’s a series, The Big C, where actress Laura Linney plays a teacher with melanoma and a year to live. The good news is they had a second season!
My point is there are now nearly 12 million cancer survivors. Three of work them at Patient Power (one is me, almost 61, one is in her 50’s, one is just 18). More and more of us do not have just months or a year to live. We are true survivors. We have to start watching our cholesterol and taking baby aspirins, we have to watch our weight, plan for retirement or manage a fixed income. For the young one, it’s plan for college. We have to think about who we might vote for in the next election. We are LIVING! Maybe for a full lifespan, maybe not, but living each day with purpose.
Yes, it’s true there could be “another shoe” that drops, Read more »
*This blog post was originally published at Andrew's Blog*
March 9th, 2011 by AndrewSchorr in Better Health Network, Research, True Stories
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Maybe you read the other day in The New York Times that the pharmaceutical industry has a problem. Big blockbuster drugs like Lipitor are going off patent and the industry leaders don’t have new blockbusters showing promise to replace them. So the big companies search for little companies with new discoveries and they consider buying them. Industry observers think the days of $5 billion-a-year drugs to lower cholesterol or control diabetes may be past for awhile, and the companies will have smaller hits with new compounds for autoimmune conditions and cancer.
When I saw my oncologist for a checkup yesterday — the news was good — we chatted about the article and the trend toward “niche science.” We welcomed it. We didn’t think — from our perspective — the world needed yet another drug to lower cholesterol. We need unique products to fight illnesses that remain daunting, some where there are no effective drugs at all. For example, my daughter has suffered for years from what seems to be an autoimmune condition called eosinophilic gastroenteritis (EGID). Her stomach gets inflamed with her own eosinophil cells. They would normally be marshaled to fight a parasite in her GI tract but in this case, there’s nothing to attack. So the cells make trouble on the lining of the stomach and cause pain and scarring. Right now, there’s no “magic bullet” to turn off these cells. My hope is some pharma scientists will come up with something to fill this unmet need.
In the waiting room before I saw my doctor at the cancer center in Seattle I overheard a woman on the phone speaking about her husband’s new diagnosis of pancreatic cancer. I was sitting at a patient education computer station nearby. When she was finished I introduced myself and showed her some webpages to give her education and hope: pancan.org and our Patient Power programs about the disease. She was grateful. I did tell her — and she already knew — that there was no miracle drug for pancreatic cancer and that it was a usually-fatal condition. But that there were exceptions and, hopefully, her husband would be one. Of course, wouldn’t an effective medicine be best? Read more »
*This blog post was originally published at Andrew's Blog*
February 26th, 2011 by AndrewSchorr in Better Health Network, True Stories
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I had breakfast this morning in Las Vegas with my friend, Dave Garcia. Dave is a pit boss on the graveyard shift at the Belagio Hotel where they made the modern-day “Ocean’s 11” buddy movie from 1960. Dave is also a 52-year-old chronic lymphocytic leukemia survivor. He reached out to me online and we have been friends since soon after his diagnosis in 2002.
Dave is a father of two young kids. He dreams of seeing them grow up. But, understandably, he worries. Some days more than others. Today was his day to see his oncologist and get the latest blood test results. Would his white blood count (WBC) be in the normal range? If so, his third round of treatment was still working. If not, he might be headed to a stem cell transplant, short-term disability, and living in another city for weeks or months.
As you can imagine, Dave was on pins and needles today. He would be against more chemo because he worries about the toxic drugs killing cancer cells but weakening him in the long run. Dave admits his blood pressure goes up on these days.
Dave is not alone in his fear. For millions of cancer survivors, while each day is special, some days are anxiety producing. For me it’s when I have a strange ache or pain. I rarely tell Esther, but I worry. For almost everyone it’s on days when we are having a “checkup.” The worry is, is this the day another shoe will drop? Fortunately, that hasn’t come for me yet and I hope it never will. I am happy to say Dave just texted me. His worry today was unfounded. The WBC was normal. He was given a pass at least for a few more months. We hope forever!
At another meeting today in Las Vegas there was a discussion about information for cancer patients. Nurses ticking off all sorts of facts and admonishments to patients. The nurses feel they are doing their job of education quite well. Some patients would say maybe not so well. How come? Fear. For us it is not clinical routine. It is our lives on the line at diagnosis or at a checkup. We often don’t hear so well in those moments. Dave may not have heard so well today. Only one word counted: “Normal.” Read more »
*This blog post was originally published at Andrew's Blog*
