“A Clinical Trial of One”: Art Levine’s Story

Written By Julia Brabant
August 2021

Diagnosed: May 2019
Current Status: Continuing Treatment

Every pancreatic cancer case is different, and a treatment that fails in one patient may prove highly successful in the next. Rabbi Art Levine’s case is a prime example of this, and his willingness to undergo innovative new treatments is among the reasons he’s home with his wife today.

From Cruise Ship to Chemo

Diagnosed with pancreatic cancer in 2019 after returning home from a trip around the world, Art had stopped in England, Ethiopia and India before meeting his wife, Barbara, in Australia to lead religious services aboard a cruise ship. His wife hadn’t seen him for a month and commented that he seemed lethargic and out-of-sorts, which he hadn’t noticed.

As the cruise continued, he began to feel ill-at-ease. He wasn’t feeling pain or exhaustion, but he felt “off” in a way he couldn’t quite describe. He visited the ship’s infirmary, and the doctor, after running all available tests, didn’t see any obvious cause for concern but did suggest that Art consult a doctor with more resources.

Upon arriving home, Art’s vague symptoms continued. But he didn’t go a doctor until he began experiencing serious back pain when he’d lie down, having to sleep in a recliner rather than his bed. He scheduled a visit with his friend, a gastroenterologist, guessing only that he might have picked up something during his travels, as he’d contracted cellulitis in Ethiopia and been treated for what turned out to be a fistula in India. Art, 63, had been healthy his entire life, escaping the diabetes, high-blood pressure and cancer that had afflicted other family members.

An MRI shockingly revealed tumors on his pancreas, liver and lymph nodes. A CT scan confirmed that he had metastatic pancreatic cancer, which is cancer that had already spread beyond the pancreas. It was too late for radiation or surgery. Art consulted pancreatic cancer specialists. The appointments were somber; Art was told that treatment options were limited, with his one-year survival odds no better than 50/50.

“Friends were surprised that I wasn’t traveling to a leading university or cancer research hospital for treatment, but I had learned that all would administer the same drugs as my local hospital,” Art said. “So, for two years, I was able to treat only minutes from my home.”

First and Second Line Chemotherapy Treatments; “Flunking-Out” of a Clinical Trial

Art started “first-line” (first treatment) chemotherapy using FOLFIRINOX, a powerful combination of drugs used to treat advanced pancreatic cancer. Side-effects are cumulative and many patients can’t tolerate numerous infusions. But Art’s went better than expected. “At the beginning, my wife stocked up on cleaning supplies – including a large box of gloves. But although I had a wide range of unpleasant side-effects, I only vomited once. I even managed to lead religious services on another cruise, the dates of which fell exactly between chemo infusions.”

After a year of every-other-week FOLFIRINOX infusions, a CT scan showed that they were no longer effective. In June 2020, Art’s oncologist, Dr. David Park of St. Jude Providence Medical Center in Fullerton, California, switched him to a “Gemzar” combination, the only FDA-approved pancreatic cancer chemo regimen. This became Art’s “second-line” treatment. Dr. Park also recommended that Art concurrently participate in a clinical trial that involved replacing his red blood cells through transfusion. A special “manufactured” blood product was overnighted from New Jersey. Unfortunately, Art “flunked out” of this trial, he says, when his body rejected the transfusions.

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: Pancan.org)

“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.”

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