Defying all odds and exploring a remarkable journey beyond diagnosis

By Nicole Holman

In August 2021, then-28-year-old Mike Knudson set out on what he thought would be an adventure-filled hiking vacation inside Glacier National Park in Montana. Little did he know at the time that this journey into nature would be the start of an unexpected life path.

It all began innocuously enough just before Mike was scheduled to leave for his trip. One morning before work, he felt a faint tingle course through his body and a peculiar taste fill his mouth as he ate breakfast. The sensations happened again intermittently over the next few weeks and persisted into late August during Mike’s hiking trip. As he trekked more than 20 miles across the mountaintops of Glacier National Park, Mike began to experience symptoms more frequently and severely, which forced him to cut his trip short. When he returned home, he experienced additional symptoms that included chronic fatigue, sensitivity to light, nausea, loss of appetite, and body soreness.

At this point, Mike called in sick from work and went to a local emergency room, where he tested positive for Lyme disease and was given antibiotics. Yet, something still was not right. “I still felt terrible, and I remember telling my friends that if I still felt bad by the upcoming weekend after I finished the antibiotics, I’d go back to the hospital. But I did not make it to the weekend,” Mike says. “That Friday, my legs gave out and I collapsed and passed out in my apartment. My roommates called 911 and got ahold of my family, and I was rushed by ambulance to the nearest ER.” Soon after arriving at a Twin Cities hospital, Mike blacked out. By midnight, he’d regained consciousness and was transferred by helicopter to Mayo Clinic Hospital – Rochester, Saint Marys Campus. “Two thoughts crossed my mind at this point,” Mike says. “‘Whatever I have is very serious,’ and ‘It’s a good thing I’m going to the Mayo Clinic, because if anyone can treat it, it’s them.’”

An unexpected odyssey

When Mike arrived at Saint Marys, Mayo Clinic neurosurgeon Ian Parney, M.D., Ph.D., says testing revealed that his worsening symptoms were being caused by a variant of a grade IV glioblastoma called an isocitrate dehydrogenase (IDH) mutant astrocytoma. IDH mutant astrocytomas account for approximately 4% of all grade IV primary brain tumors and have a 21- to 30-month survival rate average. “A grade IV IDH mutant astrocytoma is less common than glioblastoma but more common in younger people,” Dr. Parney says. “It’s a malignant brain tumor with a strong tendency to recur in the brain.”

Testing showed that Mike’s tumor had two distinct components. “The first was a very aggressive appearing component that lit up with the contrast dye on his MRI in his left temporal lobe,” Dr. Parney says. “The second was much larger but less aggressive involving his left frontal, temporal and insular lobes.”

Under normal circumstances, clinicians like Dr. Parney would have time to discuss and consider treatment options for brain tumor patients. But given that Mike was “very sick with recurrent seizures and a decreased level of consciousness due to the pressure from the mass inside his head” when he arrived at Mayo Clinic, Dr. Parney knew that wasn’t going to be possible for him.

“HE IS ONE OF ONLY A HANDFUL OF BRAIN TUMOR PATIENTS IN MY CAREER THAT I HAVE TAKEN TO THE OR FOR AN EMERGENCY CRANIOTOMY,” DR. PARNEY SAYS. “WE USUALLY HAVE MORE TIME TO CONSIDER OPTIONS. IN HIS CASE, IT WAS NECESSARY TO REMOVE THE ENHANCING, AGGRESSIVE APPEARING COMPONENT AS SOON AS POSSIBLE TO SAVE HIS LIFE.”

Because of the severity of Mike’s symptoms and the swelling in his brain, Dr. Parney made the decision to perform two separate surgeries to remove Mike’s tumor. The first would require Mike to be awake during the procedure so that Dr. Parney and others in the operating suite could mitigate the potential risk that surgery could have on Mike’s motor and speech skills. Mike’s second surgery was even more complex because it carried a risk of significant long-term side effects, such as difficulty speaking or weakness on one side of his body for the rest of his life, paralysis, and even death. Despite these risks, Mike knew he wanted to move forward with the second procedure. To prepare, Dr. Parney worked with colleagues from Mayo Clinic’s Departments of Radiology, Laboratory Medicine and Pathology, Neuro-Oncology, Radiation Oncology, Physical Medicine and Rehabilitation, and Speech Pathology to get the best care and treatment plan in place for Mike.

In addition to this inner-specialty collaboration with colleagues across Mayo Clinic, laboratory testing from Mayo Clinic Laboratories also played a crucial role in establishing Mike’s diagnosis and treatment plan. Aditya Raghunathan, M.D., M.P.H., from Mayo Clinic’s Anatomic Pathology Laboratory, reviewed tissue samples from Mike’s tumor during his surgical procedures, which revealed that while Mike’s tumor showed a resemblance to glioblastoma, it possessed distinct features with a more favorable prognosis. Testing also unveiled a potential susceptibility to targeted agents in case of tumor recurrence.

A path to healing

During Mike’s second surgery, staff from Mayo Clinic’s electroencephalogram lab played a critical role in monitoring his speech and motor skills to ensure they were not impacted by the procedure. “Fortunately, the most pain I went through was honestly just from the tightness of the head wrap bandage,” Mike says. “But over the following months, I had some prolonged symptoms. Most occurred because my tumor was next to my speech center. So, while I still understood all the definitions and knew all the words to an extent, I would forget them mid-sentence.”

Another challenge for Mike was reestablishing his appetite after the four months of rapid onset nausea he’d experienced before coming to Mayo Clinic. “I lost 40 pounds and went from being able to walk perfectly fine to hardly being able to walk more than a few blocks,” he says. “For two months, I used crutches or walking sticks just to walk around the block.”

Today, Mike’s continued healing is marked by his resilience and determination. Following his second surgery, he visited a speech therapist for three months. These efforts yielded remarkable improvements in his speech and communication skills, which underscored his unwavering dedication to regaining his quality of life. He’s also met with Michael Ruff, M.D., chair of Mayo Clinic’s Division of Neuro-Oncology, every two months for comprehensive MRIs and updates on his condition.

“EVERY TIME I HAD AN APPOINTMENT, I'D WRITE UP TWO WHOLE SHEETS OF QUESTIONS TO ASK MY DOCTORS AND THEY WOULD ANSWER EVERY SINGLE ONE OF THEM,” MIKE SAYS. “I DEEPLY APPRECIATED THE RESPONSES TO HELP ME UNDERSTAND WHAT WAS HAPPENING.”

In addition to his doctors, Mike has leaned on his friends and family for support throughout his recovery. Both of Mike’s parents are Mayo Clinic employees. His dad, Steve, is chair of Contracting and Payer Relations, while his recently retired mom, Terri, served as senior director of Strategy Management Services for Mayo Clinic’s Department of Laboratory Medicine and Pathology. “Mike is doing incredible,” Terri Knudson says. “I mean, talk about going past the average. And with his youth and his strength, he’ll beat this thing. A lot has happened in 22 months, but Mike’s still living his life to the fullest. He has a pretty long bucket list, and he’s checking them off quickly.”

Since returning home to the Twin Cities, Mike has embraced his fresh perspective on life by rekindling his love for past hobbies while exploring new interests. Notably, he has devoted time to learning two languages, Spanish and Japanese. He also has reignited his love for archery, making chain mail, blacksmithing, leatherworking, playing piano, reading books, and going for 50-mile bike rides. The longest ride he completed recently stretched for 70 miles, a testament to his determination to surpass his own limits.

True to his adventurous spirit, Mike has also revisited his love for travel. During the summer of 2022, he embarked on thrilling quests to the Rocky Mountains with his friends and a memorable voyage to Australia and New Zealand alongside his parents. During these travels, he fulfilled his lifelong dream to hike one of the world’s Seven Summits, Mount Kosciuszko in Australia, and Mount Doom, New Zealand’s largest active volcano, which served as the iconic backdrop for his favorite film series, Lord of the Rings. While in New Zealand, Mike and his parents also skydived together over Queenstown, a town that some call the adventure capital of the world.

Envisioning hope

With an ever-growing bucket list and the encouraging progress of his health, Mike remains steadfast in his belief that he will continue to defy the odds. Having surpassed the two-year milestone of his diagnosis, both Dr. Parney and Dr. Ruff share Mike’s optimism while recognizing the remarkable trajectory of his journey.

“Mike has done really well,” Dr. Parney says. “He went on to enroll in a clinical trial where he received standard treatment with radiation and chemotherapy as well as an experimental immunotherapy. Coincidentally, I happen to be the principal investigator for this clinical trial. His tumor has shrunk even further on his MRI scans and there has been no sign of recurrence even two years after his diagnosis. We are hopeful but will need to remain vigilant.”

Dr. Ruff echoes Dr. Parney’s optimism.

“Mike is doing what I think we all hope we would do after a serious diagnosis of cancer: living his life to the fullest, traveling, even skydiving,” he says. “He benefited from an exceptional set of surgeries, and a compelling clinical trial using immune therapy in addition to the standard of care. In the near future, he may also benefit from groundbreaking advances in our field targeting the IDH mutation, which his tumor harbors and acts as a molecular driver of the disease. This past June, data was published regarding the successful targeting of this mutation in patients with IDH mutant gliomas with a new form of targeted therapy. While we don’t know that all patients will benefit from the use of these targeted agents or the optimal timing the agents should be employed, we have a now new approach with a proven rationale. It fills you with a sense of hope, and it may benefit other patients like Mike.”

With his health on the mend and his outlook increasingly positive, Mike is looking forward to more progress in his medical journey with Mayo Clinic as well as ongoing research that could bring about improved outcomes for other patients. His story serves as a poignant reminder that life’s most invaluable moments should not be delayed but embraced here and now.

“NO MATTER HOW MUCH TIME YOU HAVE LEFT, LIVE LIFE TO ITS FULLEST,” HE SAYS. “THAT GOES BEYOND PEOPLE WITH THIS CONDITION. I SPENT A LOT OF TIME DELAYING TRIPS SAYING, ‘I'LL DO THAT IN FIVE YEARS. I'LL DO THAT IN 10 YEARS.’ TAKE THE TIME THAT YOU HAVE LEFT TO GO ENJOY THE LIFE THAT YOU HAVE LEFT WITH ALL THE THINGS YOU'VE EVER WANTED TO TRY. AND LISTEN TO WHAT THE DOCTORS SAY.”

Learn more

Learn more about glioblastoma, astrocytoma and other types of glioma and find a clinical trial at Mayo Clinic.

Join the Brain Tumor Support Group on Mayo Clinic Connect, an online community for patients and caregivers.

Also, read these articles:

• "Mayo Clinic expert describes 3 common brain tumors and their treatment"
• "Against the odds"
• "Research provides critical information about the size and growth speed of gliomas"
• "Making progress in treating glioblastoma"

A version of this article was originally published on the Mayo Clinic Laboratories blog.