March 9th, 2011 by AndrewSchorr in Better Health Network, Research, True Stories
No Comments »
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
No Comments »
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*
January 14th, 2011 by AndrewSchorr in Research, True Stories
1 Comment »
I am really excited about serving as the emcee for next week’s Personalized Medicine World Conference in Mountain View, California near San Francisco. I also will be the moderator of a panel discussion on patient empowerment. As I prepare, I am interviewing the panelists and their stories are very inspiring.
One panelist is Bonnie Addario. Bonnie had been an oil company executive in the Bay Area. She began having chest pain. Was it her heart? No. Was it a nerve problem? No. Doctors were stumped. Bonnie was frustrated, but she was also a woman of action — a “powerful patient.” She went on her own for a full body scan. The news was not good. A lung cancer tumor was wrapped around her aorta and other vessels. It was inoperable. But, fortunately, chemotherapy and radiation shrunk the tumor and loosened the stranglehold it had on her blood vessels. Surgery was then possible. It took 17 hours and she even had more radiation before she left the operating room.
Bonnie’s life was saved. But what then? She was a changed woman who wanted to do more to advance care in lung cancer. She organized a conference, first to help UCSF, where she was treated, but it immediately became clear it should be bigger. Bonnie found herself forming the Lung Cancer Foundation. Read more »
*This blog post was originally published at Andrew's Blog*
January 4th, 2011 by AndrewSchorr in Better Health Network, Health Tips, Opinion, Research
No Comments »
You are an individual right? To your mom and dad you are/were like no other. Hopefully your family and friends continue to see you as one-of-a-kind. Had you considered your doctor should see you that way too? Not as yet another one with diabetes, or heart disease, or cancer, but as a singular human being with biology that may be different from even the next person through the door with the same diagnosis.
This is the age of “personalized medicine” and it will accelerate in 2011. It is our responsibility as patients to ensure the power of this concept is leveraged for us each time we interact with the healthcare system. This is especially true as we manage a serious chronic condition or a cancer.
Now, in research and in clinical practice there are refined tests to determine what our specific version of a disease is and there are tests to see how a targeted therapy is working in our bodies. In other words, there’s the opportunity to see which therapy might be right for us that might be different than what is right for another person, and then there is the opportunity to monitor the therapy early on to see if it is doing its job. Read more »
*This blog post was originally published at Andrew's Blog*
