Terry Kegaan

A Study in Resilience

After a harrowing six-year battle with cancer, Terry Keegan recounts his story and what got him through

  This is intended for U.S. residents 18 years of age and older.
I

n an upscale restaurant on a chilly Friday afternoon in central Ohio, a man who admittedly tries to do everything right looks down at a spot of French onion soup on his yellow button-down shirt. He shakes his head and dabs at the spot with his napkin.

“Happens every time,” Terry Keegan says.

“Oh, I have a stain stick in my purse,” his wife, Donna, laughs. “We’ll get it.”

The stick is quite an advancement in clothing care, when you think about it. Not long ago—say, back when the Keegans got married 35 years ago—a soup stain had to wait for the washing machine. Now, thanks to new technology, a solution fits in a purse. 

Terry Keegan

Terry Keegan

During the past six years, the Keegans have approached every problem they’ve encountered in a similar way: identify, understand, then reach for a solution. Three times, Terry’s been leveled by cancer news; and three times, it didn't add up to him. A Pittsburgh native and engineer, Terry planned his life in detail at a young age, each step designed to make him a more successful husband, father and worker. He married his college sweetheart, started a family before 30 and oversaw an eight-figure budget as a director of engineering before he was 31. He ate well, never smoked and barely drank. So, in 2011, when a doctor told him that biopsy results from the lesion at the base of his tongue revealed squamous cell carcinoma of the head and neck, Terry, then 54, fainted in the consultation room.

After consulting with his doctor at Ohio State University, Terry underwent surgery. They removed the tumor on his tongue and 66 lymph nodes to be sure. The threat seemed to be gone. Still, just over a year later; the cancer reappeared in the muscle layers of his neck, a perplexing development given the site of the original tumor. 

This time, surgery alone wouldn’t suffice. Terry began a regimen of platinum-based chemotherapy combined with radiation of all affected areas—his tongue and around his neck—five days a week for seven weeks. Four weeks in he had to have a feeding tube inserted, since he could no longer eat or swallow normally. It remained in place for more than two months after he finished treatment.

But the biggest blow came in the summer of 2014, when Terry’s one-year PET scan revealed three spots on his right lung. It was still squamous cell carcinoma, but now it was metastatic. On a Friday night in August, the night before one of Terry’s favorite events of the year—a charity bike ride to benefit the cancer center at OSU—his doctor told Donna that her husband had a year, possibly slightly longer, left to live.

I thought that if you take care of your body, it’s supposed to take care of you.

Luck is an unfaithful force. Terry is a 60-year-old man who makes sense of the world through spreadsheets and data and formulas. His oldest son, Terence, is a robotics engineer who shares his father’s analytical brain. Terence was salutatorian of his high school class. He closed his graduation speech with a line he’d heard from his father his entire life: “You make your own luck.” 

When his cancer kept coming back, Terry couldn’t help but feel blindsided and like he’d done something wrong. “I thought that if you take care of your body, it’s supposed to take care of you,” he remembers telling his doctor in disbelief. 

Terry’s doctor could only tell him that there’s a degree of randomness to everything—the why doesn’t always reveal itself.

That kind of talk—talk of unforeseen consequences—is shattering for someone like Terry. He’s president of a company that manufactures composite panels, including one that he believes could replace the traditional cinder-block foundations of houses one day. Before this job, from 2005 to 2010, he helmed a company that made composite armor for military vehicles. The stuff was a complicated mixture that made the vehicles bulletproof and resistant to the improvised explosive devices used in combat. 

“We can help. We can create. We can benefit,” Terry says of the composite armor, but also as if he’s reciting his personal code.

At his core, Terry believes in the human capacity to find solutions to any problem. So after Donna told him the news that he had only a year or so to live, Terry spent about three days preparing for his death, moving money around, buying Donna a new car to make sure she’d have something reliable.

Then he turned his attention to his cancer: “OK, we have a problem. Now what?”

First, during the fall of 2014, doctors tried a combination of three types of chemotherapy, including one that was platinum-based. The results were mixed: The three tumors on his lung shrunk, but when they took one of the drugs away the tumors grew again. 

That Christmas, Terry’s two sons came home, like they do every year. Terence was 30 and recently married. Ryan was 27. The family gathered around their then 58-year-old father for photos, wondering if this would be their last Christmas. In one photo, Ryan, a businessman with more of an entrepreneurial mind than his father and brother, stands behind his father. Terry is smiling and Ryan is turned away from the camera, tears filling his eyes.

Three months later, Terry’s doctors offered him one more shot. A new immunotherapy drug, they told him, had worked well on a certain type of lung cancer and was being tested for squamous cell head and neck cancer that had been previously treated. That afternoon in March 2015, Terry enrolled in the clinical trial for OPDIVO® (nivolumab).

Story continued below

Indication

OPDIVO® (nivolumab) is a prescription medicine used to treat a type of head and neck cancer called squamous cell carcinoma of the head and neck. OPDIVO is for adult patients who have been treated with chemotherapy that contains platinum, but their head and neck cancer has returned or spread after treatment.

It is not known if OPDIVO is safe and effective in children less than 18 years of age.

Study Design and Results

OPDIVO was approved by the FDA for this use based on a clinical trial comparing 240 patients given OPDIVO to 121 patients given standard therapy options. Standard therapy options included cetuximab, methotrexate, or docetaxel.

In that trial, 36% of people on OPDIVO were still alive at 1 year compared to 17% of those on standard therapy options. That’s more than double the one-year survival rate.

People on OPDIVO also had a 30% reduced risk of dying compared to those on standard therapy options. Half the people on OPDIVO were still alive at 7.5 months compared to 5.1 months for those on standard therapy options.

Serious Side Effects and Common Side Effects

OPDIVO is associated with a number of serious risks that may impact a patient’s ability to work, function, and participate in activities of daily living. Some of these risks include problems that can sometimes become serious or life-threatening and can lead to death. Serious side effects may include lung problems (pneumonitis); intestinal problems (colitis) that can lead to tears or holes in your intestine; liver problems (hepatitis); hormone gland problems (especially the thyroid, pituitary, adrenal glands, and pancreas); kidney problems, including nephritis and kidney failure; skin problems; inflammation of the brain (encephalitis); problems in other organs; and severe infusion reactions. These are not all of the side effects of OPDIVO. Tell your doctor if you have any side effects while taking OPDIVO.

The most common side effects of OPDIVO include: feeling tired; pain in muscles, bones, and joints; diarrhea; cough; constipation; back pain; fever; rash; itchy skin; nausea; shortness of breath; decreased appetite; upper respiratory tract infection; and weakness.

Please see U.S. Full Prescribing Information and Medication Guide for OPDIVO, or talk to your healthcare team.

Not long afterward, the tumors started to shrink—and they continued shrinking. Eight months after his first infusion OPDIVO was still working. (Results are not typical. OPDIVO will not work for everyone. Results may vary. The same study discussed above where 240 patients received OPDIVO and 121 patients were given standard therapy options showed that there was no significant difference between the two treatments in the length of time that patients lived without their tumors worsening.  There was also no significant difference in the reduction of tumor size between the two treatments.)

Terry participated in the charity bike ride that summer. He made it back the next year too, in 2016. And now, two and a half years after being told he had a year to live, Terry and Donna are sitting around a table laughing about soup stains. (Results are not typical. OPDIVO will not work for everyone. Results may vary.) 

They say their sense of humor helped get them through. They met in college, in a Pittsburgh bar called Luna, and they married three years later. “My mom was not very happy about that,” Donna says now, laughing. “But Terry has always had a plan.”

Image

Terry and Donna live in a tidy brick house on three acres just outside of Granville, Ohio, about 30 miles east of Columbus. They have friends around here, but they give off the vibe that they only need each other. She drove him the half hour to Ohio State countless times for his worst treatments. They made up jokes along the way. Given the scars on his neck, he’d hold a bolt up to each side à la Frankenstein, just to get a laugh. 

They give nicknames to everything. Her car is Luci. The young surgeon who helped them became their third “son,” according to Donna, because she jokes that she always wanted a doctor for a son. 

Donna’s a worrier. She regularly reads blogs and searches all things cancer online to see if there’s anything new she should know about. Terry believes only what he can explain: He created spreadsheets to track how much OPDIVO would potentially be in his body over the two-year trial, given the drug’s half-life. He still has the charts. 

He’ll talk to anyone about OPDIVO and how it helped him overcome the odds.

“Let’s create new statistics. All these old statistics are demoralizing,” he says. “On my eventual gravestone, they’ll say, ‘He was a good dot.’”

Terry still participates in the charity bike ride every August. In fact, he takes leisurely rides every Saturday on a trail that snakes through the Ohio countryside, through woods and past fields and grain silos. 

Let’s create new statistics. All these old statistics are demoralizing.
Terry Keegan -- A New Kind of Luck

At home, they’ve turned their upstairs into a game room and a movie theater. They keep mementos here, things like football memorabilia or the hat commemorating Ryan’s four years as a member of the famed Ohio State marching band. He played mellophone and trumpet in “The Best Damn Band in the Land,” Terry says proudly.

On one wall is a mural of a bar scene, and, if you look closely, you can see little symbols of their lives. For instance, the calendar in the mural is always turned to August, with the 22nd circled. That’s Terry and Donna’s anniversary. Written in the beam on top of the bar are Terence’s words from his graduation speech: “You Make Your Own Luck.” 

The far wall is a backdrop for their projection screen. Two recliners sit side by side, surrounded by posters for movies and Broadway shows.

They sit here most evenings now, just the two of them, Terry and Donna, watching movies and television series and enjoying nights they didn’t know they’d have together. They talk about the future, things like planning a vacation to a national park in a couple of years. 

On her wrist, Donna wears a charm bracelet. Her sons and husband give her a new charm every Christmas, birthday and Mother’s Day. Each is meaningful in its own way, she says, but one has a special place. Her son Terence gave it to her back in 2011, just before Terry’s first cancer surgery. The charm is covered in shamrocks, and still there are times when Donna, sitting beside her husband, catches herself reaching to rub it for luck.

Indication

OPDIVO® (nivolumab) is a prescription medicine used to treat head and neck cancer (squamous cell carcinoma) that has come back or spread and you have tried chemotherapy that contains platinum and it did not work or is no longer working.

It is not known if OPDIVO is safe and effective in children less than 18 years of age.

Important Safety Information for OPDIVO® (nivolumab)

OPDIVO is a medicine that may treat your head and neck cancer by working with your immune system. OPDIVO can cause your immune system to attack normal organs and tissues in many areas of your body and can affect the way they work. These problems can sometimes become serious or life-threatening and can lead to death. These problems may happen anytime during treatment or even after your treatment has ended.

Serious side effects may include:

  • Lung problems (pneumonitis). Symptoms of pneumonitis may include: new or worsening cough; chest pain; and shortness of breath.
  • Intestinal problems (colitis) that can lead to tears or holes in your intestine. Signs and symptoms of colitis may include: diarrhea (loose stools) or more bowel movements than usual; blood in your stools or dark, tarry, sticky stools; and severe stomach area (abdomen) pain or tenderness.
  • Liver problems (hepatitis). Signs and symptoms of hepatitis may include: yellowing of your skin or the whites of your eyes; severe nausea or vomiting; pain on the right side of your stomach area (abdomen); drowsiness; dark urine (tea colored); bleeding or bruising more easily than normal; and feeling less hungry than usual.
  • Hormone gland problems (especially the thyroid, pituitary, adrenal glands, and pancreas). Signs and symptoms that your hormone glands are not working properly may include: headaches that will not go away or unusual headaches; extreme tiredness; weight gain or weight loss; dizziness or fainting; changes in mood or behavior, such as decreased sex drive, irritability, or forgetfulness; hair loss; feeling cold; constipation; voice gets deeper; and excessive thirst or lots of urine.
  • Kidney problems, including nephritis and kidney failure. Signs of kidney problems may include: decrease in the amount of urine; blood in your urine; swelling in your ankles; and loss of appetite.
  • Skin Problems. Signs of these problems may include: rash; itching; skin blistering; and ulcers in the mouth or other mucous membranes.
  • Inflammation of the brain (encephalitis). Signs and symptoms of encephalitis may include: headache; fever; tiredness or weakness; confusion; memory problems; sleepiness; seeing or hearing things that are not really there (hallucinations); seizures; and stiff neck.
  • Problems in other organs. Signs of these problems may include: changes in eyesight; severe or persistent muscle or joint pains; and severe muscle weakness.

Getting medical treatment right away may keep these problems from becoming more serious.

Your healthcare provider will check you for these problems during treatment. Your healthcare provider may treat you with corticosteroid or hormone replacement medicines. Your healthcare provider may also need to delay or completely stop treatment, if you have severe side effects.

OPDIVO can cause serious side effects, including:

  • Severe infusion reactions. Tell your doctor or nurse right away if you get these symptoms during an infusion of OPDIVO: chills or shaking; itching or rash; flushing; difficulty breathing; dizziness; fever; and feeling like passing out.

Pregnancy and Nursing:

Tell your healthcare provider if you are pregnant or plan to become pregnant. OPDIVO can harm your unborn baby. Females who are able to become pregnant should use an effective method of birth control during and for at least 5 months after the last dose of OPDIVO. Talk to your healthcare provider about birth control methods that you can use during this time. Tell your healthcare provider right away if you become pregnant during treatment. Before receiving treatment, tell your healthcare provider if you are breastfeeding or plan to breastfeed. It is not known if OPDIVO passes into your breast milk. Do not breastfeed during treatment.

Tell your healthcare provider about:

  • Your health problems or concerns if you have immune system problems such as Crohn’s disease, ulcerative colitis, or lupus; have had an organ transplant; have lung or breathing problems; have liver problems; or have any other medical conditions.
  • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

The most common side effects of OPDIVO when used alone include: feeling tired; pain in muscles, bones, and joints; diarrhea; cough; constipation; back pain; fever; rash; itchy skin; nausea; shortness of breath; decreased appetite; upper respiratory tract infection; and weakness.

These are not all the possible side effects. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Bristol-Myers Squibb at 1-800-721-5072.

Please see U.S. Full Prescribing Information and Medication Guide for OPDIVO.

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