Last updated: August 24. 2013 2:09AM - 56 Views

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After Louise Belley-Schnarr's 2007 diagnosis with metastatic melanoma, she parted with one piece of clothing from her closet each day, a ritual to prepare herself for death. Her outlook remained bleak after her tumors grew back despite surgical removal and interferon therapy. As a last-ditch effort, her oncologist sent her to the University of California, Los Angeles, in 2009 for a clinical trial. She was among the first patients to take a pill targeting melanoma that is spread by a genetic mutation. Belley-Schnarr would compulsively feel the marble-sized tumor under her left arm, hoping the treatment was working. Within days of taking the medication, the tumor began to visibly shrink. “She would touch that tumor 100 times a day,” recalled her husband, Richard Schnarr. “I felt it once a day. It didn't take a lot of close observation to realize what was happening. It was totally unbelievable.” Nearly three years later, Belley-Schnarr, 60, shops for new clothes, travels internationally and displays no signs of cancer. The drug she takes, called Zelboraf, was approved by the Food and Drug Administration last year. In February, her UCLA oncologist, Dr. Antoni Ribas, was one of the authors of a study in the New England Journal of Medicine about the improved life expectancies for patients who respond to the medication. “They call it medicated remission,” Belley-Schnarr said. “Without the drug, the cancer would come back.” Ribas, who specializes in melanoma, said Belley-Schnarr of Santa Ana, Calif., is one of the longest-living patients, most of whom eventually die because the cancer finds a way to work around the drug. Ribas is also a paid consultant for Genentech, which makes Zelboraf. “I wouldn't call her terminal right now because we have had no evidence of melanoma for the last 2 1/2 years,” he said. “If we've seen melanoma in her body, it's been on the run. Will that be forever? I don't know.” Melanoma is a particularly deadly cancer because it's so difficult to treat. Skin cells are designed to keep growing in spite of any damage, Ribas said. “They're very resistant to chemotherapy because these are the cells that have to overcome toxins and be able to survive,” he said. Belley-Schnarr, a former teacher who grew up in Quebec, is among roughly half of advanced melanoma patients who have a gene mutation called BRAF V600E that allows the cancer to spread. For those with the mutation, 53 percent in the published study experienced tumor shrinkage of more than 30 percent. The drug works by turning off the cancer's growth signal, Ribas said.The median life expectancy for melanoma that has spread is six to 10 months, according to the study. For patients taking the drug, the survival rate increased to 16 months. In the case of Belley-Schnarr, she was diagnosed in November 2007 and began taking Zelboraf in June 2009. She said she lived longer than the average before the medication because her tumors were slower growing than most melanomas. Emmy Wang, a Genentech spokeswoman, said Medicare and private insurance cover the drug. She said a typical sixmonth course of treatment costs $61,000. Medco, a prescription benefit company, for instance, requires preapproval for coverage and charges a co-pay of $126. Belley-Schnarr has learned to live as if every day could be her last but also with renewing optimism about her future. “I am more confident than I was a year ago,” she said. “I don't know that I will ever think this is the long-term solution for me. I'm hoping this pill is going to work for me forever, but I don't know.” She was diagnosed after taking her daughter to a pre-college physical. At the appointment, she mentioned a lump under her arm. Belley-Schnarr returned for a biopsy and was diagnosed with late-stage melanoma. “I'd had no other health issues ever,” she said. “It was very traumatic. It was devastating.” The melanoma spread to her thigh, where tumors were removed twice. When a tumor appeared under her arm, her local oncologist halted treatment but suggested she visit UCLA. She first tried an experimental vaccine without results. Next, she started Zelboraf. At first, she experienced side effects including debilitating neuropathy in her feet, fatigue, joint pain and dry eyes and hair. Ribas has since lowered her dose, and her symptoms have improved. Belley-Schnarr's response is still being studied, so she receives the drug for free. A scan in March showed up cancer-free. “I am the most fortunate person,” she said. “Stage 4 melanoma is very difficult to beat. I can't help but think every day that I get that I'm going to do everything I can to enjoy today to the fullest.”






In the nick of time: Woman survives stage 4 melanoma with help of new drug
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