Finding luck in cancer journey

Hunter, a sous chef from Milwaukee, recalled leaving the doctor’s office at about noon—but not leaving the parking lot until 5 p.m. He sat in shock, thinking about his life, his family and his loved ones.

He knew the death rate was high for metastatic pancreatic cancer, and it didn’t matter who you were. His mind went to celebrities like Alex Trebek, who died of pancreatic cancer in 2020.

“When you’re watching TV and you’re seeing people that’s worth millions, some money that you will never attain, and they aren’t being saved … what kind of hope have I got?” Hunter said.

Yet Hunter is still fighting and grateful to feel good. For the past year, he’s been part of a phase 2 clinical trial at UW Carbone Cancer Center testing a new targeted therapy for patients whose tumors have a rare gene fusion that is found in only 0.2% of all solid tumors. The treatment is a weekly infusion of a monoclonal antibody, Seribantumab, that is meant to inhibit tumor growth for these patients.

For Hunter, the treatments have led to tumor shrinkage and a renewed sense of peace and hope.

“I don’t see the figure of death following me anymore,” he said.

Right after he was diagnosed in 2019, Hunter began chemotherapy in Milwaukee. Those treatments came with difficult side effects, including pain, nausea, extreme fatigue and loss of his trademark dreadlocks and beard. Hunter said he put on a brave, happy face for his friends and family because he didn’t want to add to their grief, but privately he felt so sick and defeated.

Faced with dwindling treatment options, Hunter’s oncologist urged him to consider UW Carbone’s clinical trial because Hunter’s tumor had the rare gene fusion to qualify. Hunter initially had no desire to do any clinical trials, but because he had a strong, trusting relationship with his oncologist, Hunter listened.

“When you already respect a person, not for their job title but for who they are, when (my oncologist) said this is the next big thing, he really means it,” Hunter said.

As part of the trial, Hunter drives weekly from Milwaukee to Madison for his treatments. While the commute isn’t easy, he looks forward to visiting with his oncologist Dr. Nataliya Uboha, who specializes in gastrointestinal malignancies, as well as the clinic and research staff. Those friendly, caring relationships helped Hunter enjoy the hours spent in treatment.

Compared to his chemotherapy, Hunter said the side effects of the trial treatments have been minimal, and he feels better day-to-day. When imaging showed shrinkage his tumors, he was overwhelmed. He’s grateful that he’s had such supportive care, likening it to how Dorothy met the right friends to help her get home in the classic tale, “The Wizard of Oz.”

“If there’s anything you need on this journey, it’s luck,” he said.

Dr. Mark Burkard, who is principal investigator on the trial, said Hunter is one of three participants locally. The trial is part of a multi-clinic effort nationally to find enough patients for this study. Tumors with this rare genomic alteration are most common in lung and pancreatic cancers but can appear in several cancer types.

Burkard said UW Carbone’s clinical trial infrastructure and resources make it possible to host such small clinical trials for rare cancer types. The results so far from the trial Hunter is in are very promising, and he’s hopeful the therapy will soon be more widely available for others with that rare tumor type.

“This can be a huge gamechanger for these people,” Burkard said.

Uboha, who also leads the Cancer Therapy Discovery and Development Program at UW Carbone, said this trial is part of a larger focus on precision medicine and understanding the important role a patient’s tumor genomics can play in treatment success. She’s happy that Hunter is seeing good results and helping to bring new therapies to others.

“It’s just a great reminder why clinical research is important,” she said.