Brittany Person was reluctant to enroll in the clinical trial that her oncologist, John Kaczmar, M.D., recommended.
Not because she was afraid of taking part in research, but because she just couldn't deal with any more side effects. She'd already had every one in the book after being treated for a tongue cancer that had returned – and then returned again.
"I was just coming off the tail end of chemo, where I had the worst side effects from the chemo and radiation. My body was just tired and beat up and scarred," she said. When Kaczmar outlined the potential side effects of the investigational drug, she thought, "I just really don't want to do that again. That didn't sound like something I wanted to put myself through."
As she and her husband, Patrick Wilkin, drove from MUSC Hollings Cancer Center to Duke Cancer Institute for a second opinion, Person told Wilkin, "They need to tell me something crazy in order for me to do this trial."
That's pretty much what they did.
"The lady at Duke told me if I didn't do anything, I would have six months to live," Person said.
"When we got the whole 'six months to live' talk, if you do nothing, or two years, if you do the standard immunotherapy, and that the experimental trial is your best shot at actually beating the thing, that's when Brittany and I were like, 'Yeah, let's do this experimental trial,'" Wilkin said.
The trial was a test of adding a new drug, BCA101, to the standard approved immunotherapy, pembrolizumab. Results reported at the American Society of Clinical Oncology annual meeting in June 2023 would later show that the combination had a response rate of 65% in HPV-negative head and neck squamous cell cancers – far better than the response rate of 25-35% under standard therapy. But those results were more than a year away as Person was deciding whether to participate in February 2022.
Ultimately, she decided to enroll. She did experience significant immune-related side effects while on the trial, but those largely resolved after she stopped treatment. And the combination therapy worked.
"I got a PET scan this February, and there was no active cancer," Person said. She's re-entered the workforce, starting the respiratory therapy career that she had been training for when she was diagnosed. And she and Wilkin are tentatively looking to the future. "I mean, it's just amazing."
Wedding interrupted
In early 2021, Person was going to school to become a respiratory therapist, working as an emergency medical technician for Charleston County EMS (where she and Wilkin had met) and planning a wedding – all as the COVID pandemic was sweeping through South Carolina in a fearsome winter.
She did not have time to deal with a bump on her tongue.
"I just thought that I was stressed. I tried rinses, over-the-counter whatever, whatever, and then finally, I got to the point where I couldn't eat or drink anything," she said. "It was so painful."
Person went to the dentist, hoping for an antibiotic.
"She took one look at me and said, 'I'm not touching that. You need to go to a surgeon to get it cut out.'"
Still, the dentist didn't anticipate a serious problem. "At the time, I wasn't even 30 – I was 29. She said, 'Don't worry about it. You're young. You don't smoke. You don't drink. You don't have a family history. Let's rule it out and go on from there."
Person and Wilkin arrived at Hollings hoping for a simple issue that could be quickly dealt with. Instead, they heard shocking news.
Person had, at the very least, stage two cancer. And the surgeon feared that once he began operating, he would discover that it was actually stage three.
Medical staff members were debating whether to operate only on her tongue or to also perform a neck dissection to remove lymph nodes in her neck, but Person knew which she preferred – she really, really, really didn't want surgery on her neck right before her wedding.
Nonetheless, the surgeon persuaded her.
"He said, 'Listen, I've been doing this for many years, and I'm telling you, just to my very core, I will never sleep at night if we don't actually do it,'" Wilkin said. "And he was right."
But before surgery, Person had a few tasks to complete.
No. 1 – get married. "Both being in the health care field, we knew that the difference between a fiance and a husband is a very big difference in the hospital," Wilkin explained. "So we just eloped."
No. 2 – finish her degree. Only a couple of months from graduation, Person was determined that her degree wouldn't be derailed.
"I said, 'I'll do whatever I have to do to graduate on time.' So I basically had to complete everything before I went into surgery, and then I completed my final from my ICU room," she said.
Surgery confirmed the worst prediction – she had stage three cancer.
Oral cavity cancers are generally treated with radiation after surgery to kill off any remaining cancerous or precancerous cells. Person was scheduled to begin radiation therapy, but she also wanted to walk down the aisle in a second wedding ceremony for family and friends.
"I wanted to learn how to swallow and get my feeding tube out before I walked down the aisle – and physically be able to walk down the aisle," Person said. She worked with physical, speech and occupational therapists at Hollings to relearn everything, even talking.
"It ended up being I graduated, had my wedding rehearsal on Saturday, got married Sunday and started radiation Monday – just a ridiculous time frame," Person recalled.
Squamous cell tongue cancer
There's no clear reason why Person got cancer. Anecdotally, though, head and neck cancer specialists are seeing more of these cancers in young women, Kaczmar said. He's a medical oncologist who specializes in treating head and neck cancers with immunotherapy and targeted therapy.
"There are a lot of questions: Why are there these young women getting these tongue cancers? Is it an environmental exposure? Is it some virus we haven't been able to detect? We don't really know why some people are getting this," he said.
The general consensus, though, is that this particular type of cancer, even if caught at an early stage, should be treated as rigorously as possible because of its aggressiveness.
"They're just mean cancers," Kaczmar said.
That was, unfortunately, what Person experienced.
After her wedding, she began 30 cycles of radiation, followed by a surveillance period to see if the cancer would return.
"And before it was up, the cancer had come back on the opposite side. So I went back and had the neck dissection on the right side. They took my tonsils and all my lymph nodes on that side as well," she said.
After the second surgery, she underwent 35 cycles of radiation therapy and seven cycles of chemotherapy.
Once again, she was put on a surveillance schedule following treatment. And once again, the cancer returned. Barely a month after finishing treatment, she began experiencing shoulder pain. A physical therapist felt the tumor in the back of her neck and told her to head back to the doctor's office.
Now, in addition to the tumor that could be felt in her neck, the cancer was showing up on scans of her lungs. At this point, Kaczmar recommended that she enroll in the clinical trial.
Unsure of what to do, Person and Wilkin consulted a number of doctors from Lowcountry health systems as well as Duke. The surgeons, Wilkin said, each had a slightly different plan, but none could offer more than a lukewarm endorsement for their own plans. Essentially, they were willing to try something only because of her young age. On the other hand, "All the medical oncologists were on the same page that she needed to do the experimental treatment," he said.
Clinical trial
BCA101, the drug being tested, is a bifunctional antibody. Bifunctional antibodies have two arms, each primed to a different target. In this case, the drug inhibits EGFR, a protein that is often highly expressed in squamous cell cancers of the head and neck, and at the same time disables TGF-β, a molecule that promotes tumor growth in the presence of EGFR.
Kaczmar said he encouraged Person to try the study because it offered more hope than the standard treatment.
Her test results were PDL1 high, meaning she was a candidate for pembrolizumab, an approved immunotherapy drug designed to help her own immune system to attack her cancer. And at a center without clinical trials, pembrolizumab alone would likely be the next step.
Hollings, however, as the only NCI-designated cancer center in South Carolina, offers a portfolio of clinical trials that give patients access to treatments that could become the standard of care in the future. And even though pembrolizumab is designed to target the PD1 pathway, it works about 27% of the time. Kaczmar wanted something more for Person.
"The way I looked at is you're getting basically two drugs that have activity – this drug is like a two-for-the-price-of-one because it's a bispecific antibody," he said. Person would get the pembrolizumab whether or not she participated in the trial. "We could get a great response, but we're still talking 20% response rate. So let's add something to it," Kaczmar said.
"The way I looked at is you're getting basically two drugs that have activity – this drug is like a two-for-the-price-of-one because it's a bispecific antibody."John Kaczmar, M.D.
Person's cancer responded to the new combination. But so, too, did everything else in her body, it seemed. She developed an autoimmune reaction that left scarring and dealt with ongoing pain. Frustratingly for Person and Wilkin, she was in a demographic of one in the trial – the youngest patient in a study where the median age was 65 and the only female of childbearing age.
"They can't tell me how other people like me are doing because they don't have the data. So that was always very frustrating. Just for a sense of peace of mind and so you can plan, you want to ask, 'OK doc, how bad is it? What's my prognosis?' And they couldn't tell me anything. Even now to this day, they can't tell me anything. So that's the most frustrating part about not having that clinical data group," Person said.
Finally, because of the side effects, Kaczmar considered whether it was time for Person to stop the trial.
"It got to the point where he was considering taking me off the trial or at least holding me off for a long period of time to give my body a chance to rest," she said. "So he said, 'Before we do anything, let's just get a PET scan and see where we are, because I'm not even sure that you have any active cancer at this point. We'll go from there.' And sure enough, I got a PET scan this February, and there was no active cancer."
Building a future
Today, Person has no active cancer. She's started working as a respiratory therapist, and she and Wilkin are looking to the future.
That can be hard to do, sometimes, after all they've been through.
"Around scan time, we definitely get really anxious. I think our faith in God has really carried us through every single scan because it's really anxiety provoking," Person said. "But at the same time, we're like, 'OK, we're going to live our lives.' Like starting a new career and being back in the workforce, which is challenging on its own. I think we are looking to start a family. We have to wait because of all the treatment so we don't have necessarily a timeframe on that, but we're definitely looking forward to it. We're just trying to live our lives."