Owen Munday during his treatment. Courtesy Owen Munday When Owen Munday was 14, he was diagnosed with a stage 4 hypermutated glioblastoma. The survival rate was low, but a clinical trial saved his life.
He’s now 18 and cancer-free. This is his story, as told to writer PollyAnna Brown. This as-told-to essay is based on a conversation with Owen Munday, an 18-year-old student in Canada, about his experience with a clinical trial for a rare form of cancer.
It has been edited for length and clarity. Four years ago, I got a concussion at school and I was bedridden for a little while. I wouldn’t have thought much of it, but I kept getting migraines.
My head felt like it was being condensed and expanded at the same time, so the doctors ordered an MRI. From the imaging, they realized there was a tumor in the center of my brain and my fourth aqueduct ventricle, which was blocking the flow of my spinal fluid. It turned out that I had a stage 4 hypermutated glioblastoma, an aggressive brain tumor caused by metastasized colorectal cancer.
I was in surgery a day later. My first surgery was a biopsy of the tumor and the insertion of an external ventricular drain, or EVD, into my head to regulate the pressure of the spinal-fluid buildup in my brain. The surgery had happened so quickly that I’d forgotten I’d been told about the EVD.
Waking up with it was traumatic; I kept waiting for someone to come take it out. Every time I rolled over in bed, went to the bathroom, or otherwise adjusted myself, the EVD also needed to be adjusted to keep it level with my eyes. Soon I had another surgery to remove my tumor, and then another to remove the EVD and replace it with permanent shunt that regulates my spinal fluid.
It turned out that my tumor was a very hard type to remove; it was malignant and grew in what they call a spidered way, attached to the surrounding tissue. The doctors told me they would have difficulty removing it with a scalpel, so they did a suboccipital craniotomy with mass resection instead, sticking a needle in my head to suck out as much of the tumor as possible with the next operation. Both surgeries took about 8 ½ hours total, and while the doctors were able to remove some of the tumor, they weren’t able to get it all.
Things got worse before they got betterIn addition to the surgeries, I underwent chemo and gamma-radiation treatments. But these treatments weren’t enough. I could feel something wasn’t right, but the doctors didn’t believe me until they did an MRI to check for more tumors.
Sure enough, regular chemo and gamma radiation weren’t working; the cancer had spread to my spine. Because of this, my doctor entered me into a clinical trial through the Pediatric SU2C Catalyst program for immunotherapy treatments. My tumor was super rare.
Colorectal cancer usually develops in the colon and rectum, but mine developed suddenly in my brain, classifying it as hypermutant, grade 4 glioblastoma. Glioblastomas tend to affect people between the ages of 45 to 70 and occur very rarely in children; the doctors told me only three to four cases in people my age are diagnosed each year. A scan showing Munday’s brain tumor.
Courtesy of Owen MundayMy clinical team also determined that I had Lynch syndrome, a genetic disorder that causes an increased risk of developing multiple types of cancer, including colorectal cancer. Because of how deadly and malignant my tumor was, my chance of survival through traditional cancer treatment was virtually nonexistent. There was no other option but to move forward with the trial; it was a do-or-die situation.
There was originally a two-week waiting period to get into the trial, but because of my situation, I got approved the next day. The infusion treatments were like a miracle drugI started the clinical trial in April 2019 and began receiving treatment infusions, which were scary at first because they had unexpected side effects. I was extremely fatigued, and in one instance, I started to speak in what was basically gibberish; I wasn’t making any sense at all.
I didn’t respond to the questions I was asked, and I didn’t know where I was or who was around me. It was almost like a zombie had taken over my body. Luckily, the speech side effect only happened that one time and then my health started improving, even though the fatigue lasted for the length of my treatment.
For the next 2 ½ years, my parents and I drove to Toronto for treatment every two weeks. Even though the infusions were challenging, I was also happy because I liked talking to the nurses and doctors. The neurologist would have hour-long conversations with me, and it was fascinating.
I learned so much about my body, the treatments, and the field of biology in general, which I’ve always loved. Unfortunately, my mom had to quit her job because of the travel, and it really disrupted our home life. I have three other siblings and they kind of got put on the back burner while I was fighting for my life.
Luckily, we made it out on the other side closer than before. On top of that, the tumor was gone within three months. It was a miracle.
What life is like for me now that I’m cancer-freeMy parents, my twin brother, Riley, and I live in a forested area now. There are trees all around, and I have a dog that I adopted at the beginning of my bout with cancer. His name’s Ozzy and I love him like a son.
My dog can roam free, but he always stays close to me. Munday now. Courtesy of Owen MundayMy family has a wood mill and a shop where I do woodworking and a bit of construction, and we keep chickens there for fresh eggs.
My dad taught me electrical engineering, like wiring and mechanics. I’m also about to finish my last few credits in high school to graduate. Since my infusions stopped, I’ve been doing a lot more physical activity.
I feel stronger and a lot better overall. I do have some permanent damage from where the tumor was positioned around my optic nerve so I can’t look up without moving my entire head. That can strain my eyes and cause headaches.
But other than that, I’m a normal 18-year-old, and I’m grateful to be alive. Read the original article on Insider.
From: insider
URL: https://www.insider.com/i-survived-a-rare-form-of-cancer-2022-10
