Glioblastoma sucks — A LOT — but I wouldn’t trade it for anything. The people I’ve met going through this battle have been a huge encouragement and blessing. So many helpful and caring people, it’s awesome.
My GBM Story: Kyle C.
Most people probably would not consider falling face first onto a dresser to be a blessing.
But were it not for the fall and the emergency room visit it caused, 20-year-old Kyle Coddington’s brain tumor likely would not have been discovered.
And that was not the only miracle in his glioblastoma story. Reviewing his first CT scan, doctors at the Florida hospital initially thought he had suffered a stroke. But a specialist doctor who came that night — not his usual shift — decided to take another look, and ordered the MRI that led to the GBM diagnosis.
Although eager to biopsy the tumor immediately, Kyle’s parents insisted he return home to Pennsylvania to undergo treatment there. It turned out to be another fateful decision. Dr. Alexander Yu and Dr. Tulika Ranjan and their teams at Allegheny General Hospital decided it would be too dangerous to access Kyle’s tumor, which was located at the top of his brain stem. Doctors decided it was safe enough to perform two separate biopsies. One to determine what type of tumor Kyle had, and the other was for a ChemoID Match test. After the biopsies, he began radiation treatment.
When his tumor failed to respond sufficiently to the standard of care regimen, Carmustine (aka BCNU) was selected, and Kyle started six cycles of the drug, delivered in the clinic via a port every six weeks. The therapy was effective at shrinking the tumor. When a new spot appeared, four rounds of pinpoint radiation seemed to do the trick, and Kyle now takes a daily dose of Imatinib (Gleevec) to keep the cancer at bay.
“We are just hoping it keeps working,” Kyle said. “I’ve had no bad side effects. I’m extremely lucky.”
Initially handed a six months prognosis, Kyle is still going strong more than three years later. Now 24, Kyle married Emily on April 4th, 2020. They both work for an outdoor equipment store owned by Emily’s father. Kyle is also pursuing a college degree in communications, and is passionate about politics, with a focus in healthcare.
At the time of his fall, he was living in Pensacola, Florida, working for the Department of Parks and Recreation. He had noticed no symptoms at the time, besides a little tingling near his knee, which he attributed to too much desk time.
Since the fall, he has experienced nerve damage on his right side, which flares up from time to time, affecting his fine motor skills in particular. When that happens, he takes steroids, which carry their own unpleasant side effects.
But his faith, positivity, and the support of his family has helped carry him through.
“There are struggles, obviously. Every day, the thought goes through your mind: ‘What if it comes back?’ At the same time, you can’t just sit and dwell on it. You’ve got to fight it,” he said.
“I might be 24, but Mom still goes with me to my appointments. Now I have a wife who sticks with me through it all. I’m so thankful.”
- Get a second opinion. “My tumor was definitely inoperable. If the original doctors had even attempted a biopsy, I could have been left in a coma.”
- Pick a team you trust. “My oncologist is amazing. She treats me like a human, not just a patient. I don’t know what I would do without her. I have never doubted her judgment, and her entire team is super.”
- Think happy thoughts. “You have to be positive with this cancer. You’ve got to fight it.”
- Educate others. “It really helps me to talk about it.”
- Use the OurBrainBank app and community. “We are like a giant family. Everyone is so generous.”
On the OurBrainBank app:
“I love the symptoms tracker and the charts. It’s cool going back and seeing how things change from week to week. I also use the memory and concentration games. Although I haven’t had any cognitive problems so far, I’m always worried about that, so I use the games to make sure I’m on par.”