For Charleston resident and cancer survivor Roger Jones, his journey to beat a rare form of the disease ultimately led him to embark on several overseas trips to Germany to receive a novel treatment not yet approved in the United States.
Jones was diagnosed with neuroendocrine cancer in 2005. It started in his small intestine and spread to his liver. Neuroendocrine tumors are rare – approximately 12,000 people are diagnosed with neuroendocrine cancer in the U.S. every year, and it affects roughly 6 in 100,000 people worldwide.
The tumors can occur anywhere on the body where there are endocrine cells, though they most commonly form in the GI tract, lungs and pancreas. “It contrasts to carcinoma in that it most if the time metastasizes, and the most common place it metastasizes is the liver,” explained Jones, who founded and owns the real estate development company Companion Associates, Inc.
Early diagnosis and treatment are key to living longer with NET, but one of the challenges with neuroendocrine cancer is that many people who contract this typically slow-growing cancer don’t show any symptoms, so the tumor is often discovered inadvertently while checking for something else during an X-ray or CT scan. When a person does exhibit symptoms, they generally include hot flashes, diarrhea and wheezing. It often gets misdiagnosed as irritable bowel syndrome or anxiety, Jones noted.
When Jones turned 50, he had a colonoscopy procedure done that found his tumor, and, after performing scans, doctors discovered it had spread to his liver. He underwent surgery to remove the primary tumor from his small intestine, but his liver had developed too many tumors for surgery.
Those tumors remained fairly stable for about four years, then they started to grow aggressively. That’s when Jones began seeking treatment. “My local oncologist here really felt like he couldn’t do anything,” recalled Jones. “He thought I had too many [tumors] in my liver to deal with it.”
His search brought him to Omaha, Nebraska, to see a liver transplant specialist as well as to the MD Anderson Cancer Center in Houston and other hospitals. “That’s when I learned about the treatment in Germany,” recounted Jones, “that was specifically for neuroendocrine cancer.”
A multidisciplinary team of doctors in Bad Berka, Germany, treated Jones with peptide receptor radionuclide therapy, a cancer treatment available in Europe that wouldn’t be approved in the United States until 2018. The tumors in the body attract a hormone called octreotide that is naturally made in your body. His doctors made a synthetic octreotide and attached radiation to it. “So theoretically the radiation then is attached to the tumor, and hopefully it will damage or kill it,” Jones explained.
They also performed a Gallium-68 scan, specifically used to detect NETs (also unavailable in the U.S. at the time) to see if there were tumors anywhere else on his body. Jones took four trips to Germany from 2009 to 2012. The tumors stopped growing for about three years and decreased by approximately 20% after the Germany treatment.
In 2013 and 2014, he underwent a treatment at the Medical University of South Carolina through his interventional radiologist, Dr. Marcelo Guimaraes, called chemoembolization, a procedure which uses chemotherapy drugs and embolic particles to treat liver cancer. Doctors go into the liver with a catheter, putting chemo in the tumors and releasing a material that cuts the blood flow. “And it worked,” said Jones. “It killed all my tumors. So I’ve been tumor-free since about 2014.”
He followed up with a scan every six months for the next five years. Finally, in 2018, the tumor board at MUSC met and determined that Jones was in the clear.
THE FINAL VICTORY
In 2007, Jones started paddling with Dragon Boat Charleston, which launched in 2003 as a kind of floating support network for cancer survivors. He later wrote a book published in May 2024 called “The Final Victory,” chronicling his time with the group, which formed an all-cancer survivor team (comprised of 12 men and eight women) to compete in the 2010 Dragon Boat Racing National Championships in the over 50 division.
Despite practicing for a-year-and-a-half, the team didn’t think they had much of a chance but ended up winning the national championship, earning them the right to represent the United States in Hong Kong in the international competition. Unfortunately, they couldn’t go because cancer took the lives of some team members.
The book details how Jones, now 70, became an advocate for himself and others suffering from NET. “When people ask me now, ‘well what would you recommend?’ I say, ‘I would not recommend a second opinion. I’d recommend a third and fourth and fifth opinion,’” emphasized Jones, who serves on the board of the Healing NET Foundation, which increases awareness of neuroendocrine cancer and promotes the education of and collaboration among physicians, health care providers, patients and caregivers.
This is because there are a wide variety of doctors and procedures when dealing with a rare disease like NET. Signifying its atypical nature, neuroendocrine cancer’s symbol is the zebra. Jones said the reasons for this are threefold: it’s rare; secondly, every zebra’s stripes are different; and lastly, a treatment that works for one person may not work for another.
“That’s rare that it worked that well,” mused Jones of his NET cancer treatment. “I’m one of the real lucky ones.
By Colin McCandless
