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Health Matters: Providence St. Jude Medical Center | 11 Magic Pills? Shortly after his initial diagnosis, Art had undergone genetic testing of his tumors, which revealed a rare V599 genetic mutation. Through Dr. Park, Art learned about a pill combination, BRAFTOVI + MEKTOVI, that the FDA had approved for use in melanoma patients with the V600 genetic mutations, which was potentially similar to Art's V599 mutation. There were obstacles, though. First, the pills were not approved for pancreatic cancer usage. Second, they cost $30,000 a month! By 2021, Dr. Park was able to secure FDA approval for a "clinical trial of one," with that "one" being Art Levine. Dr. Park also managed to get the drug company behind BRAFTOVI + MEKTOVI to provide the pills free of charge. "Dr. Park came highly recommended, and he has really gone the extra mile to help me," Art notes. "I've been very lucky to have him responsible for my care." "The pills were an experiment," he adds. "We had no idea whether the V599 mutation was close enough to V600, or whether a drug intended for melanoma would work for pancreatic cancer." Art took BRAFTOVI + MEKTOVI for six months and experienced few and only mild side effects. "It was like a vacation," he notes. "Infrequent blood tests and no infusions." His most recent CT scan, however, shows tumor growth, so Art is now investigating clinical trials. A Plant-Based Diet Art notes that he began a vegan diet two-and-a- half years before his cancer diagnosis. He did so for ethical, environmental and religious reasons, as well as health. He now believes that his plant- based diet may have postponed the onset of the disease and/or lessened the speed of its spread and the severity of treatment side effects. His diet includes daily cruciferous vegetables, such as broccoli, which can help slow the growth and spread of pancreatic cancer cells, and other foods and nutrients that aid in fat digestion, a frequent problem for pancreatic cancer patients. (Source: "In my experience, many doctors minimize or even discount the importance of diet," Art said. "They look primarily or exclusively at medication. When I was first diagnosed and asked a leading pancreatic cancer specialist for diet advice, he replied, 'If I were in your situation, I'd eat whatever I want.' But I believe that had I abandoned my vegan diet, I'd have had more severe treatment side-effects – or already be dead. The quality and variety of plant-based foods has exploded in recent years. I eat "cheddar cheese," "parmesan cheese," "cream cheese," "chick-in," "ice cream," and many other substitutes. Their taste and texture are close to the original, and after several years, I don't miss the original at all – except Hebrew National hot dogs! And, apart from these "substitutes," I eat far less processed foods." Helping Increase Pancreatic Cancer Awareness For a long time, other than undergoing necessary treatments, Art did his best to "ignore" his cancer "death sentence." He avoided social media pancreatic cancer sites, deeming them too depressing, and even left most internet research about the disease, treatment and side-effects to his wife. The pandemic and his chemo-suppressed immune system also had major isolating effects. When he wasn't too fatigued from chemo or otherwise feeling poorly, Art largely sat in his home office and worked. One recent day, though, Art decided to search for pancreatic cancer podcasts to which to listen while he worked. He discovered "Purple Rainbow," created by a woman in the United Kingdom who lost her husband only 33 days after his pancreatic cancer diagnosis. She began interviewing doctors, researchers, patients, family members, charitable organizations and others to discuss medical, social, economic, and other aspects of the disease. Inspired, Art contacted the Pancreatic Cancer Action Network and obtained a list of pancreatic cancer research and outreach organizations, including the Seena Magowitz Foundation. He requested resources he might use to help raise awareness about the disease. Updating a PowerPoint presentation shared by the Mid- Shore Pancreatic Cancer Foundation (Maryland), he has begun presenting his story at local civic groups, emphasizing several points. Most importantly, "Don't ignore or procrastinate when you have even vague symptoms," he said. "These can include, as in my case, general feelings of unwellness and/or back pain. Other symptoms might include jaundice, dark urine, floating and/or especially foul- smelling stool, digestive problems such as poor appetite, indigestion, and nausea, unexplained weight loss, and sudden-onset Type 2 diabetes. Unlike a lot of other cancers, there is no early- detection screening test for pancreatic cancer. Plus, its symptoms are often misdiagnosed – with catastrophic consequences because pancreatic cancer is so aggressive. As with me, a high-percentage of cases aren't diagnosed until the cancer is far advanced. It may be up to you, early on, to suggest to your doctor the possibility of pancreatic cancer." After diagnosis, Art urges patients to explore their options with regard to genetic testing, germline testing (genetic testing of DNA, rather than tumors) and clinical trials – but to also recognize that what may help them could be something entirely different from what helps the patient in the next room. "I've learned that pancreatic cancer is a complicated, diverse disease – different tumor types have different symptoms, treatments, and results," he said. "You can't lump everything together, because the type you have may have higher survival or success rates that the one you read about online. Make an effort to learn as much as possible about your specific case and situation. When first diagnosed, a physician friend told me not to lose hope, because new treatments are being developed all the time. I thought he was just trying to cheer me up — but he was right. Not only did I survive the first year, but I'm now well into my third, and for the past six months, I've felt almost normal. I hope to start a new clinical trial soon that will extend my life and productivity – including spreading pancreatic cancer awareness — even longer. I feel very lucky." For a complete list of research trials and requirements, call the Providence St. Jude Oncology Research Department at 714-992-3000 ext. 4332.

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