Experimental treatment provides hope against brain cancer
Dennis Kothmann, TCU class of 1969, and his wife, Candy, followed his beloved Horned Frogs to the Rose Bowl and twice to the Fiesta Bowl. Making a trip to the Peach Bowl a couple of years ago was overtaken only by the birth of a grandson.
“That was a tossup,” Dennis said, he and Candy chuckling.
Two framed, team-autographed posters hang in the couple’s den, and a blanket with a giant TCU helmet is draped over the loveseat where they’re sitting. Glinting in the window, looking out to the quiet street of their sleepy Newark neighborhood 20 miles northwest of Fort Worth, is purple TCU stained glass.
“We actually have season tickets, which we renewed,” Candy said Thursday, on their 26th wedding anniversary, one that seems to conjure more reflection than most.
Because if the Kothmanns do attend TCU football games this fall, they say it will be nothing short of a medical miracle.
A jovial 71-year-old mathematician who worked half his life for RadioShack, Dennis Kothmann is battling brain cancer by choosing an experimental treatment that, so far, is showing exciting signs of progress.
Following brain surgery to eliminate as much of the tumor as possible, Dennis was diagnosed with glioblastoma, a devilish tumor that sprouted in the back left quadrant of his brain. Glioblastoma is a death sentence accompanied by the standard treatment of debilitating rounds of radiation and chemotherapy, which most often buys time in months, not years.
The time frame is 14 to 15 months for half those diagnosed; for the other half, some die sooner, some live a little longer.
Yet here he is, seven months post-surgery and feeling, actually, hopeful. Dennis did six weeks of radiation, 30 treatments in all, but he has not had a single round of chemo. He flatly rejected the two options his initial oncologist provided after his Dec. 3 surgery: Do nothing and die within months, or undergo traditional radiation and chemo, and pray like heck.
“It would have been really uncomfortable,” Dennis said of chemo treatments. “That type of treatment makes you sick and sicker. We went ahead with this one and, boy, am I glad we did.”
“This one” refers to a clinical trial Dennis joined at UT Southwestern Medical Center in Dallas. He is one of five patients at the hospital and more than 700 around the world testing immunotherapy and being treated with nivolumab (nye-VOL-ue-mab), a drug Dennis receives intravenously once a month.
The concept of immunotherapy is to use the body’s immune system to destroy cancer cells. Glioblastoma has the ability to turn down the body’s immune response, essentially masking itself. Nivolumab works to unmask the tumor and allow the body’s immune system to go to work.
“The way I think about it is it has a key that turns down the immune system,” said Dr. Edward Pan, a brain tumor specialist who leads the clinical trial. “Nivolumab is an inhibitor or that key. So by inhibiting the key, the body’s immune responses are able to be augmented, sort of turned on.”
Swelling in the brain
Because he doesn’t undergo chemo, Dennis doesn’t experience nausea. He has an appetite and doesn’t get terribly fatigued. Still, not everything is great. His vision is skewed. He can’t read anymore. The last time he drove was when he got lost going to see his doctor on Nov. 30 after Candy had witnessed puzzling behavior — mental lapses, walking into doorways at home — and grew concerned.
The yard work he once enjoyed is now under the supervision of a lawn service. He fumbles with the TV remote and, perhaps most frustrating for a man who taught algebra and calculus for 11 years at Castleberry High School before teaching at Tarrant County College, he can’t make out the numbers on his calculator.
Those issues are attributed to swelling in the brain, which can be caused by nivolumab.
“It’s hard to think when you have your brain swollen,” Dennis said.
It’s something Pan is watching closely. He’s uncertain if the swelling is treatment-induced or if the tumor is growing. Dennis is slated for his next MRI on July 20, which might or might not lend additional clues.
“One thing we go by is how the patient is doing,” Pan said. “So I wouldn’t be surprised if it is more treatment-related given how well he is doing. In general, when the MRI looks worse but the patient is stable, the tendency is for it to be treatment-induced. But that’s not 100 percent accurate.”
Nothing is in this life-and-death puzzle. Dennis is part of a group that will help provide some answers. Clinical trials experiment with the latest cutting-edge medications, and are going on at hospitals around the country and the world. These trials are essential to determine which methods and medications might be effective in the endless fight to prevent, detect and treat cancer.
Dennis reported that his eyesight has recently improved, a sign to him that maybe the swelling in his brain is receding.
“I’m starting to get hopeful,” Dennis said. “If I’m allowed to be hopeful, I’m going to be hopeful.”
Pan is more measured.
“So long as he’s tolerating the treatment and clinically doing well — there’s no obvious indication the tumor is resisting the nivolumab — we will continue,” Pan said. “My hope is the next MRI will show improvement. Swelling can come from the treatment, and I think it would eventually go away. But how long is eventually? We don’t know.”
‘It’s given us a lot of hope’
Dennis, a lifelong unwavering optimist, is literally sailing uncharted seas.
“I hope I am doing OK long enough for my grandson to recognize me. He’s 2 now,” Dennis said.
“You know what you told me, you wanted 10 years,” Candy replied.
“I do want 10 years. I’m trying to be reasonable,” Dennis said. “But you know what, there is no limit, nobody knows how this will do, so it could be three, four, 10 years, who knows? Things change so fast. When we say these are times of miracles, it is. These guys are brilliant. There are so many brilliant people out here, it just amazes me all the time.”
In a very real sense, Dennis has his daughter Mandy Pittsley, a nurse at Texas Health Resources Alliance who previously worked on the neurosurgery floor at Harris Methodist Hospital downtown, to thank for him being alive today.
When Dennis’ general practitioner in Keller immediately diagnosed something neurological and ordered a CT scan, Candy said she couldn’t get Dennis in anywhere for a week.
“Mandy happened to be off and she said to meet her at the emergency room, we’re not waiting,” Candy said. “We went to the emergency room, got a CAT scan and they made the diagnosis. That led to an ambulance ride to downtown Harris, and within a couple days he was having brain surgery.”
She said neurosurgeon Diana Wilson told them in three more days the tumor would have been inoperable.
With Wilson’s unsettling diagnosis of glioblastoma, Mandy started contacting heads of clinical trials at Duke, UCLA, MD Anderson Cancer Center in Houston and UT Southwestern, seeking alternative treatments. They quickly settled on UT Southwestern and Dr. Pan.
“It’s given us a lot of hope,” said Mandy, one of Dennis and Candy’s three children. “It was a huge shock to all of us, of course, when they found the tumor. We want my dad to live for the next 20 years. I have a 2-year-old (son Elliot) I want him to be around to see graduate high school, and especially my daughter (14-year-old Emily) graduate high school.
“He’s not ready to stop fighting. He wants to be around a long time.”
“I think miracles happen”
According to the American Brain Tumor Association, there are nearly 700,000 people in the U.S. living with a primary brain and central nervous system tumor, and nearly 17,000 this year will die from it. Glioblastoma represents 14.9 percent of all primary brain tumors and has the highest number of cases of malignant tumors with an estimated 12,390 new cases predicted in 2017.
“I think miracles happen,” Dennis said. “Not that I’m looking for a miracle, but it’s nice to be able to see something positive happen.”
“Well,” said Candy, “it’s nice to be on the cutting edge of science.”
There is no guarantee Dennis will continue to show progress. What is known is that people like him are essential to discovering effective treatments.
“Some patients say, ‘I don’t want to be a guinea pig,’ ” Pan said. “Well, a guinea pig doesn’t need these treatments. You’re sick. The guinea pig is healthy.”
In due time, football season will again arrive, seats at Amon G. Carter Stadium awaiting the return of Dennis and Candy. What might have seemed impossible just months ago, seems to be becoming all the more plausible.
“That’s the goal right now,” Pan said. “I don’t have a reason to feel that’s not possible. All these people want is to lead a normal life as best as possible. They want a chance to know it’s possible. With doing trials and having a positive attitude, anything is possible.”
Dennis will remain on nivolumab indefinitely. Pan said it could be another six months, maybe a year before doctors all over the world can make definitive statements about the effectiveness of the treatment and potential widespread use.
“I don’t know what happens when it’s no longer a trial,” Candy said.
“It might mean we’re cured,” Dennis said. “It is amazing, it really is amazing.”
Jeff Caplan: 817-390-7705, @Jeff_Caplan