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January 2009 Volume 3 #1
 True Grit: Facing advanced PCa Hormone resistant PCa: News Osteoporosis and prostate cancer Fort McKay: A sharing tradition |
True Grit: The never-say-die attitude of men with advanced hormone refractory prostate cancer is an inspiration By John Hoffman  Ten years ago, few people would have guessed that Gordon Dunn would still be around in 2008. Gordon has been fighting prostate cancer since 1995, and his illness has been considered hormone refractory since 2005.That means he got to the point where his cancer was progressing in spite of the hormone treatments designed to keep it in check. When first line treatments like surgery or radiation fail to eradicate all cancer cells, men with prostate cancer are often put on hormone therapy, various treatments designed to reduce the influence of testosterone, which is the "food" that makes prostate cancer cells grow. Often a hormone treatment works well at first, but sooner or later, for reasons not quite clear to doctors, men "hit the wall." Their PSA rises in spite of the treatment. At that point, patients are often put on a different hormone treatment medication, which, again, usually works for a while but eventually loses its effectiveness. Once a man's cancer becomes resistant to all hormone treatments, his illness is considered hormone refractory. Gordon Dunn has been on numerous medications and supplements. The most recent is ketoconazole, a synthetic antifungal drug that also happens to shut down production of the approximately 5 per cent of a man's testosterone produced by the adrenal glands. Ketoconazole is not generally used as a prostate cancer treatment in Canada. For the last few months, it has held his PSA steady at approximately 100. Not only has Dunn survived far longer than expected, he has most likely helped other men do the same. In 1998, Dunn started The Vancouver Advanced Prostate Cancer Support Group, Canada's first support group specifically for men with advanced prostate cancer. "I had been attending a prostate cancer support group for about a year, but most men who came were recently diagnosed," Dunn explains. "There was no forum for those of us with advanced prostate cancer." Before long, Dunn had become an expert researcher, spending many hours most weeks combing the Internet for new information. He's particularly good at ferreting out information about clinical trials that most patients would never hear about through the medical system. Just recently he got a call from a man with advanced prostate cancer who was running out of options. Dunn was able to tell him about an upcoming trial of abiraterone, a drug that, new research shows, can block the continued production of androgens after standard hormonal treatments lose their effectiveness by blocking androgens made by parts of the body (other than the testes), including the tumour itself. FACT CHECKING LINK The sad irony is that Dunn himself is not eligible for this particular trial because of factors related to his health condition. Nonetheless, he soldiers on, looking for new possibilities and feeling grateful that he is still well enough to enjoy simple pleasures like going for a walk or driving a car. Now meet Ken Dreger, a 64-year-old from Calgary who describes his current state of health as "annoyed." Why so? For one thing, Dreger is certain he would not still be alive had he relied on his local medical system for his treatment. For example, Ken had been told by a local pathologist that his cancer had not spread to his seminal vesicles and lymph nodes, a finding that was later contradicted by pathologists in the United States and Germany. This "under staging" of his cancer meant that the treatment that had been recommended was inappropriate. "It took less than six months for me to see that I'd have to get off the pot and take care of myself," he says. "There are some great treatments out there, but most men never hear about them. The one thing I've learned, not just from my own experience but from the experiences of other men, is that if you're an enlightened, educated patient you're going to do a lot better." Dreger has spent a lot of his own money to get these second and third opinions. He's also gone outside the country, hiring Oregon-based prostate cancer specialist Dr. Stephen Strum to coordinate the monitoring and treatment of his illness. Currently, although Dreger has hit the wall with a number of drugs, he does not see himself as out of options. He's considering going on an Alzheimer's drug called Ebixa, which has been shown to help men with prostate cancer. He'd also like to try a drug called DCA (dichloroacetate), a relatively cheap substance used for decades to treat metabolic diseases in children, which has recently been shown to shrink cancer tumours in animals and humans. "It has amazing potential, but I can't get it in Canada. I'm going to see if Dr. Strum can help me get it." One way Ken helps to keep himself and others enlightened is through participation in Prostaid Warriors, Calgary's support group for men with advanced (mostly hormone refractory) prostate cancer. "We don't bring in speakers like most support groups," he says. "We sit around a table, talk about each guy's change from the previous month and share information about where to get treatment." Not only does this increase each man's chance of surviving longer, it improves the mental outlook of all members. "Men with prostate cancer fight and fight and fight, and then we wear out. But the group helps me to get back in the saddle and starting fighting again." Gordon Dunn's selfless work has not gone unnoticed. In 2003, he was the recipient of a Governor General's Caring Canadian Award in honour of his extensive work providing information and support to other men with prostate cancer. As the government media release that announced his award stated "[Gordon Dunn's] expertise and commitment have brought hope and solace to many patients and their families." |
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