Tongue Cancer Survivor and Oncologist Discuss Side Effects and New Treatments

Stef Gayhart, a 44-year-old from Westminster, Maryland, is an almost seven-year survivor of stage three oral tongue cancer. She speaks with Dr. Ranee Mehra, director of head and neck medical oncology at the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center, about survivorship, treatment side effects and emerging therapies.

Gayhart highlights dry mouth from radiation therapy as a constant challenge. She carries water, uses Biotene spray, tries lozenges overnight and sleeps with a humidifier to help with speaking and eating. Fibrosis and tightness in her neck and shoulders are another concern, managed through daily stretches, physical therapy, dry needling, cupping and use of a Flexitouch pneumatic compression device designed for head and neck lymphedema.

She emphasizes the importance of self-advocacy and giving oneself grace during survivorship. Support communities like CancerCare, the Head and Neck Cancer Alliance, and Young Tongues can be helpful, though it is also OK to step away if overwhelmed or create your own support path.

Mehra discusses ongoing challenges for patients with recurrent or metastatic disease. While immunotherapy benefits some patients, treatment options remain limited, and access to clinical trials can be difficult. She also highlights emerging strategies targeting EGFR. New bispecific agents that target EGFR and another pathway, often combined with immunotherapy, are showing higher response rates and longer-lasting outcomes than earlier therapies like Erbitux (cetuximab), offering renewed hope for patients and clinicians.

CURE: As a survivor of oral tongue cancer, what lasting side effects have had the biggest impact on your day-to-day life, and how have you adapted to them over time?

Gayhart: The first one that comes to mind is dry mouth, a side effect of radiation therapy. It has been with me 24/7 since about halfway through treatment. I always have to carry water with me. It affects my speaking, what I eat and how I eat safely. I manage it by always having something to drink, and I use products like Biotene spray. I have tried different lozenges, which can help, especially overnight, and I sleep with a humidifier.

The other major issue is fibrosis. I have a lot of tightness in my neck and shoulders, so I try to keep up with daily stretches. Managing side effects can feel like a full-time job. I also go to physical therapy when needed and have tried dry needling, cupping and other approaches. I use a Flexitouch device for lymphedema, which also helps with the fibrosis.

Could you explain what the Flexitouch device is?

Gayhart: It is a pneumatic compression device. Many people associate it with lymphedema in the limbs, but there is a version for head and neck. It includes a vest that zips up and a helmet component. A full session is about 32 minutes, and you can relax while using it. It helps reduce lymphedema and improves flexibility in my neck.

For patients facing recurrent or metastatic head and neck cancer, what are the biggest unmet needs in current treatment options?

Mehra: We still have limited treatment options for patients with recurrent disease. There have been advances with immunotherapy, but not everyone responds, and even when they do, the disease may progress over time. When that happens, the list of standard treatments is short.

I often look to clinical trials for investigational options, but not all patients can access them due to availability or travel limitations. We need to continue developing more treatments in this setting.

How has your experience shaped your advocacy work, and what do you want patients with head and neck cancer to understand about survivorship?

Gayhart: It is overwhelming at first. You do not know what to expect. Even as a nurse, I understood the technical aspects, but not how it would affect me personally. Everyone’s experience is different, so it is important to give yourself grace.

I encourage starting with self-advocacy and learning what works for you before helping others. Support communities can be helpful, but it is also okay to step away if they become overwhelming. Not everyone needs to take on advocacy roles, and there are many ways to get involved.

There are organizations like CancerCare, the Head and Neck Cancer Alliance and groups like Young Tongues. Sometimes, creating your own path or community is also a valid option.

There is growing interest in targeting EGFR in head and neck cancer. How could these approaches change outcomes for patients?

Mehra: EGFR has been a target of interest in head and neck cancer for over 20 years. Earlier therapies showed modest responses, but newer agents in development are bispecific, meaning they target EGFR along with another pathway. They are also being combined with immunotherapy.

These newer approaches are showing higher response rates and longer-lasting responses compared with first-generation agents like Erbitux. This has created renewed optimism for both patients and clinicians.

Transcript has been edited for clarity and conciseness.

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