‘He took my call and saved my life.’ How two men with pancreatic cancer beat the odds

Two South Florida men diagnosed several years ago with pancreatic cancer — one of the deadliest forms of the disease — are leading normal, active lives today.

Their recoveries are due to treatments using new therapies at Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and the Miami Cancer Institute at Baptist Health South Florida.

Luis Rios, a retired certified public accountant who lives in Miami Beach, was diagnosed with the most advanced form of pancreatic cancer — Stage 4 — in 2017 when he was 59.

Rios, who never suffered any digestive problems up to that point, visited his primary care doctor because of persistent stomach acidity. When the problem got worse, Rios underwent blood tests, a CT scan and ultrasound.

“They found a definitive mass on my pancreas that had spread to the liver,” Rios, 64, told the Miami Herald in a telephone interview from Churchill Downs, where he was attending the Kentucky Derby.

The diagnosis was a shock.

“It was Stage 4 pancreatic cancer,” he said. “I’m a non-smoker and come from a very large family … no one had pancreatic cancer. I went to Versailles and had a box of croquetas and a glass of Johnny Walker Blue,” said Rios, who came to Miami from Cuba in 1961 when he was 3.

Rios’ wife, Mari Tere, immediately lined up a series of appointments with local specialists. The doctors told him the cancer was not operable, but one physician referred him to Dr. Peter Hosein, an expert in pancreatic cancer and co-leader of the Gastrointestinal Cancers Site Disease Group at Sylvester.

Hosein initially put him on a chemotherapy protocol.

“It worked great for about the first eight months — much better than expected,” Rios said. “I felt good and was asked to volunteer for a clinical trial at the [MD] Anderson Cancer Center in Houston,” said Rios, who had to stop working because of the disease. Rios had sold his CPA practice in 2007 but continued working with a few clients until the cancer diagnosis. “I was planning to retire, and then I got cancer.”

On his regular visits to Anderson, Rios received an experimental drug (Olaparib) and continued to see Hosein. But about a year after the clinical trial, Rios felt “a gnawing sensation” in his abdomen in 2019. Hosein told him the cancer had returned, and put him on chemotherapy again. “I was in great pain … even painkillers and marijuana didn’t help.”

By the summer of 2019, Rios’ cancer had become resistant to all treatments, including three different types of intensive chemotherapies, Hosein said.

But Rios is one of a rare set of pancreatic cancer patients whose tumor had an inherited genetic mutation — RAD51C. “This subgroup — with mutations like BRCA and RAD51C — accounts for about 5 percent of pancreatic cancer patients,” Hosein said, “and their cancers respond to immunotherapy, while others do not.”

‘A real breakthough’

Hosein and his team — about 25 professionals — administered two different immunotherapies, ipilimumab and nivolumab, to Rios and several other patients for two years. The mutation makes pancreatic tumors more likely to respond to immunotherapy medications, which allow the body’s immune system to identify and attack the cancer cells. Without immunotherapy, the body’s immune system would not recognize or attack the malignant cells.

The immunotherapy medications were not covered by health insurance. “I had to pay for the first treatment — about $34,000 to $35,000 — but Bristol Myers Squibb gave me the rest of the treatments,” Rios said.

The success rates were excellent for the patients with advanced, treatment-resistant pancreatic cancer treated at Sylvester.

“After the first infusion, I started to feel wonderful,” Rios said. “And since then, I’ve been leading a pretty normal life ... I have a great level of energy, I’m active and I eat like a 15-year-old.”

After two years of treatment, he had no detectable disease. “This is a real breakthrough,” Hosein said.

“Dr. Hosein saved my life,” Rios said. “God put him in my path. He’s like a doctor from the old days. He took my call and saved my life.”

Earlier this year, UHealth, the University of Miami Health System established the Sylvester Pancreatic Cancer Research Institute to advance research and training aimed at preventing, diagnosing, treating and curing pancreatic cancer.

“The SPCRI will revolutionize pancreatic cancer care for patients in South Florida and beyond,” Dr. Steven Nimer, Sylvester’s director and the Oscar de la Renta Endowed Chair in Cancer Research, said in a press statement.

Laparoscopic surgery on former Carnival CEO

In February 2019, Bob Dickinson, the retired president and CEO of Carnival Cruise Lines, went to see his primary care physician, Dr. Felipe Del Valle, at Baptist Health South Florida for a case of bronchitis.

But the doctor said his patient didn’t look well, and after an examination ran some blood tests.

“That evening, the doctor called to tell me I had either a lesion on the pancreas or was going to pass a gallstone,” said Dickinson, who lives in Coral Gables. Del Valle ordered more testing and Dickinson — then 76 — was diagnosed with Stage 1 pancreatic cancer.

Understanding the gravity of the diagnosis, Dickinson was ready to search for the best treatment anywhere in the country, but Del Valle advised him that one of the leading experts in pancreatic cancer treatment — Dr. Horacio Asbun — had recently moved to the Miami Cancer Institute from the Mayo Clinic in Jacksonville.

Dickinson immediately met with Asbun, chief of hepatobiliary and pancreatic cancer surgery at MCI. “He spent an hour with me,” Dickinson said. “He interviewed me like a psychologist, an employee, a priest, a rabbi. It was very comprehensive. He explained everything and said I might die on the table. Was I willing to accept this? It’s God’s call, I said.”

Asbun used laparoscopy to perform a Whipple procedure on Dickinson. The Whipple is major surgery, while laparoscopy inserts a fiber-optic instrument through small incisions in the abdominal wall to observe organs and carry out surgery.

To eliminate any malignant tissue, the Whipple usually involves removing part of the pancreas and small intestine (duodenum), the gallbladder, part of the bile duct and lymph nodes. In some procedures, part of the stomach is also removed.

“Mr. Dickinson’s case illustrates the advantages afforded by the minimally invasive approach (laparoscopic/robotic), and the improved surgical techniques that have allowed for decreased complications, and enhanced significantly better patient experience,” Asbun said in an email to the Miami Herald.

Dickinson said the surgery lasted six hours and 45 minutes, followed by eight hours in recovery. The operation removed 40 percent of his pancreas, the gall bladder and involved ‘reengineering’ other nearby organs, Dickinson said.

After spending several nights in the hospital, Dickinson started chemotherapy, first at the hospital and then at home using a pump that delivered regular doses of anti-cancer medication. He returned to the Miami Cancer Institute for regular blood tests and adjustments to the chemotherapy.

Pain was minimal

“I never had pain,” Dickinson said. “Felt some discomfort. No stress — I was cheery and upbeat.”

He and his wife Andria traveled throughout the U.S. while he was receiving chemotherapy and flew overseas after the sessions ended on Oct. 30, 2021.

Only one minor complaint: The sound of the chemo pump activating woke him up.

Aside from travel, Dickinson remains active in charitable activities, especially Camillus House, and does some consulting in hospitality.

“I have to give credit to Andria,” he said. “If I were alone, it might have been different.”

Dickinson, now 79 and cancer-free, said Del Valle and Asbun saved his life. Del Valle identified the cancer and Asbun and his team successfully treated it. Faith, great medical care and help from his wife were critical to his success, he said.

“Everyone at Baptist was hospitable and courteous. They create a nurturing culture for patients. I was in the right place at the right time,” said Dickinson.

What is pancreatic cancer?

Of all the types of cancer, pancreatic cancer ranks as one of the deadliest.

In 2020, it ranked third (46,774) in terms of U.S. deaths, following lung (136,084) and colorectal cancer (51,869).

Pancreatic cancer represents about 3 percent of all cancers in the country, and 7 percent of all cancer deaths.

Although estimates vary, the five-year patient survival rate for this disease is 11.5 percent for all stages, ranging from localized tumors to tumors that have spread (metastasized) to lymph nodes and other organs, according to the National Cancer Institute’s statistical division.

For the most advanced tumors, or those that have metastasized, the survival rate is 3.1 percent. The best survival rate — 43.9 percent — is for localized tumors that have been discovered and treated at an early stage.

The pancreas

This organ sits behind the stomach and in front of the spine. Surrounded by the gallbladder, liver and spleen, it makes enzymes that help to digest food, and produces hormones — including insulin — that control levels of sugar in the bloodstream.

Pancreatic cancer is hard to diagnose during its early stages. Generally, people don’t experience any symptoms until the cancer has spread to other parts of the body. And while a physician performing a routine exam can feel a tumor on a patient’s liver, he/she can’t palpate the pancreas because it lies so deeply in the body.

Signs of pancreatic cancer

Symptoms include upper abdominal pain that may spread to the back, jaundice and yellowing of the skin, loss of appetite and unexpected weight loss, dark urine, light-colored stools, itchy skin, blood clots, nausea and vomiting and fatigue.

Pancreatic cancer is diagnosed through endoscopic ultrasound (a narrow tube with a camera is inserted in the mouth and pushed into the stomach where it can capture an image through the stomach wall), a biopsy (tissue sample) and blood tests seeking a specific substance (a carbohydrate antigen) that is a marker for pancreatic cancer cells.

Tumors are classified in five general categories. They may range from Stage 0 (abnormal cells in the lining of the pancreas) to Stage 1 (a tumor exists in the gland) to Stage 4 (the cancer has spread to different parts of the body, such as the liver or lungs), with two other stages in between.

Treatment

There are a variety of therapies, depending on where the tumor is located, what stage it is in and the patient’s state of health. Sometimes different therapies are combined.

Surgery may be performed to remove the cancerous section of the pancreas and localized lymph nodes. In more advanced cases, the surgeon may use the Whipple procedure, removing part of the pancreas, the duodenum (the first section of the small intestine), the gallbladder, part of the bile duct and nearby lymph nodes.

Radiation therapy shoots doses of high-energy at tumors, while chemotherapy uses a wide variety of drugs to kill cancer cells.

Immunotherapy activates the body’s immune system to fight cancer cells and targeted therapy uses small-molecule drugs and monoclonal antibodies (proteins made in labs) that attack malignant cells.

Even though patients with pancreatic cancer generally have poor survival rates, it can sometimes be cured if detected and treated at the earliest stages.

Risk factors

Doctors say they don’t know what causes pancreatic cancer, but oncologists have identified a number of risk factors. They are: smoking, diabetes, excessive use of alcohol, obesity, age (most people diagnosed are over 65), chronic inflammation of the pancreas (pancreatitis) and family history of pancreatic cancer or a genetic syndrome that may raise the risk of cancer, such as a BRCA2 gene mutation, a familial atypical mole-malignant melanoma syndrome (FAMMM) and Lynch syndrome.

Sources: American Cancer Society, National Cancer Institute (NCI), Florida Cancer Data System (FCDS), Cleveland Clinic, Miami Cancer Institute at Baptist Health South Florida, the CDC, Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and the Mayo Clinic.