For Garry Keller, the strangest thing about being so sick is that he never felt that sick.
Keller, 45, who has worked in special education for 20 years, does CrossFit every day. He’s a summer raft guide and snowboards in the winter.
After he found a swollen lymph node in his groin, doctors diagnosed a rare form of skin cancer – mucosal melanoma, which fights within membranes that line cavities of the body. The odds weren’t good. Initially, he had a 20% to 30% chance of survival.
“Before I knew it I was trying to find a way to fight the cancer and not feeling sick at all but the doctors were saying I’m pretty sick,” he said.
He’d wage a three-year battle against a cancer raging inside his otherwise healthy frame. To others, the cancer wasn’t noticeable — except that his once light-brown hair turned stark white, resembling a Marvel superhero character. Keller enrolled in clinical trials and tried experimental drugs – anything to stay alive for his wife and son, now 10.
Melanoma in the family
The news of cancer was close to home. Just five years before Keller’s diagnosis, his father-in-law was diagnosed with melanoma. He tried to fight it with trials and immune therapy, but it didn’t work. So when Keller had to call his wife, Becky, to tell her he also had melanoma, it was all too familiar. But telling his son was even harder.
“He remembers grandpa reading stories to him, so as soon as we told him, he knew what was up,” Keller said. “We had to be matter of fact. But there was a piece of me that didn’t want him to think I was sick. … Even though there was that piece that wasn’t healthy, I wanted to show my son I can power through. That I’m OK. I’m not going to die today. I’d say that a lot to myself.”
What is mucosal melanoma?
Unlike the melanoma that afflicted Keller’s father-in-law, exposure to UV from the sun has nothing to do with mucosal melanoma. This aggressive skin cancer attacks the mucous membranes that line the cavities of the body, such as the oropharyngeal, vaginal or gastrointestinal tract.
And it is rare, with only one out of 100 melanoma diagnoses being mucosal.
“We don’t know much about why it develops or who is predisposed. Genetic drivers are different and response patterns to immunotherapy are different compared to the more common cutaneous melanomas,” said Dr. Theresa Michelle Medina, a medical oncologist that specializes in cutaneous oncology at the University of Colorado Cancer Center on the Anschutz Medical Campus.
Keller’s cancer started in his rectum and spread to nearby lymph nodes, but it hadn’t metastasized beyond that. One of his first symptoms was rectal bleeding, but given his age, was attributed to having hemorrhoids. In retrospect, it was due to his primary tumor. Traditional treatment would be a lymph node dissection followed by immunotherapy.
Keller wasn’t a fan of the low odds of traditional therapy given the high risk for recurrence or distant metastasis despite surgical therapy, and the risk that he could lose the opportunity to continue to be active and make lasting memories with his son was too high for him.
“I love snowboarding with my son; going on multiday rafting trips. If they started taking organs … what if I lose that?” Keller said.
Keller and his doctors decided to take a different route: roll the dice and hope for better odds in the experimental world than in the known world, wrote his wife, Becky, in her blog, “Life according to a paranoid optimist.”
Having been alongside his wife during her father’s battle with melanoma, Keller knew there was only one place he wanted to go to beat those odds.
A Comprehensive Center for Rare Melanoma
Rare melanomas, like mucosal, are not well understood and current melanoma treatments are less effective. Medina and her colleagues at the Center for Rare Melanoma at UCHealth University of Colorado Hospital on the Anschutz Medical Campus are dedicated to understanding and treating these rare melanomas.
Keller began working with Medina.
“There were two drug therapies approved that showed to be effective, but they also carried high rates of side effects,” she said. “There were clinical trials ongoing at the time with another promising combination that was much better tolerated. People were having good responses and not having the immune toxicity that goes along with it.”
A month after his April 2016 diagnosis, Keller started his first clinical trial, which aimed to determine the efficacy of a combined treatment of Epocadastat and Nivolumab.
The emotional side effects of being diagnosed with mucosal melanoma
As Keller continued to fight for his life, most people were oblivious to the cancer raging inside his body.
“It was the hardest part to overcome,” Keller said. “I didn’t feel sick. It was hard to believe what these doctors were telling me. It’s overcoming those physiological pieces.”
Patients with melanoma often struggle with this, Medina said.
“They don’t typically do chemo so they don’t have the same outcomes as others such as losing their hair. So that means when they are out in the community, they don’t look like they have cancer,” she said. “They feel lucky that they don’t have to deal with those side effects, but then they discount the experience they have to go through.”
Through most of it, Keller continued to work as the co-director of a special education program. He continued to work out at his CrossFit gym daily. And he took his son snowboarding and rafting.
“Getting to work and doing something; not sitting home and feeling sorry for myself, that helped,” he said.
Being involved in clinical trials for melanoma
For 22 months, Keller felt hopeful.
“I was doing well,” he said. “Then all of a sudden, I wasn’t. It grew again and was aggressive.”
Keller and his UCHealth team switched gears and tried another study but after a few months, the results were disappointing and the side effects were making Keller feel horrible.
Then Keller enrolled in a new trial.
The TIL trial for melanoma
“I was patient number one,” Keller said of the Tumor Infiltrating Lymphocytes (TIL) trial. “They didn’t know what was going to happen, but it was either do or die for me so I wasn’t thinking of that.”
The National Cancer Institute study involved taking white blood cells from a patient’s tumors, growing them in the laboratory in large numbers, and then giving the cells back to the patient. These cells are called tumor infiltrating lymphocytes.
Surgery is required to get the patient’s cells. Then they are given a round of chemotherapy to prepare their immune system to accept the white blood cells.
“They only wanted to get the cells fighting cancer because what they’ve found before, with similar treatment, is that if other immune cells are active, the body can’t support that,” Keller explained.
The patient’s white cells grown from the tumor are then infused back into their body. Concurrently, the patient gets a chemotherapy drug to help boost their immune system’s response to the white blood cells. Keller had eight total immune-boosting treatments.
Eight-months into the trial scans showed a lesion that looked like it was enlarging. But it turned out to be an inflammatory reaction and not melanoma, Medina said.
Returning to a cancer-free life
Keller will remain in the TIL trial for another three years with scans every three. So far, scans show no cancer.
This summer, he celebrated his second year cancer-free. It was a return to being normal — peace of mind for his family without the thought of the bitter end lurking, he said. The only remnant now of the cancer is his white hair.
“My son thinks I’m a superhero, a Marvel character,” he said.
And if you consider Keller’s life-threatening battle against something he couldn’t see or feel, it’s a title well deserved.