Andy’s Story

Patient Story - Andy SimonBrain Tumor Patient Transforms into ‘Superman’ with the Help of a Clinical Trial

Andy Simon’s admirers started calling the indomitable brain cancer patient “Superman” even before they knew how remarkably well his body and spirit responded to a novel clinical trial.

Faster than a speeding bullet, the 52-year-old ran five miles following his first radiation treatment. More powerful than a locomotive, the father pushed through chemotherapy treatments to celebrate his daughter’s college graduation and his son’s wedding.

And this dynamic man sporting the Superman emblem intends to leap beyond cancer with a boost from an innovative clinical trial at University Hospitals Seidman Cancer Center and his legion of supporters, Team Simon Strong.

“Andy has shown tremendous spirit and determination during treatment,” says Lisa Rogers, DO, his neuro-oncologist.

Not a Typical Migraine

Simon had endured intense migraine headaches before. His gut instinct told him the searing pain that struck on Nov. 2, 2015, was different. His wife took him to the emergency room at University Hospitals Ahuja Medical Center near their Beachwood home. Pain medications did nothing to soothe him. A diagnostic scan showed a mass with bleeding into his brain.

He was transferred to University Hospitals Cleveland Medical Center under the care of Andrew Sloan, MD, Director of the Brain Tumor & Neuro-Oncology Center  at UH Neurological Institute and UH Seidman Cancer Center. The neurosurgeon utilized an innovative drug, 5-ALA – which is available only at a handful of institutions in the U.S. – along with a modified surgical microscope that lights up the tumor to guide him in safely removing the malignant glioblastoma (GBM), a grade 4 tumor.

“Despite what appeared to be a clean post-operative MRI and a return to full function, we knew we needed an aggressive approach for this tumor, which is the most lethal type of primary brain tumor,” Dr. Sloan says. “After learning the prognosis and possible treatment options, Andy wanted to hit back hard and beat his tumor.”

Simon enrolled in a clinical trial designed by Dr. Sloan and based on research originally performed in the laboratory of Stan Gerson, MD, Director of UH Seidman Cancer Center.

A Promising Trial

Most clinical trials focus on new drugs. Dr. Sloan’s trial not only uses a new drug but also a novel approach: attempting to protect the body from the side effects of chemotherapy. The patient’s blood stem cells are removed, genetically engineered to be resistant to the chemotherapy, and then re-infused into the patient.

Following the initial six weeks of radiation therapy, the standard of care, Simon started chemotherapy. But instead of receiving solely the standard drug, temozolomide (TMZ), the drug is combined with benzoguanine (O6BG), which stops the tumor from repairing the damage TMZ has done to it.

“The BG essentially ties the tumor up so the TMZ can get more punches in,” says Dr. Sloan. “However, while this ‘one-two punch’ damages the tumor, the blood stem cells, which have been genetically modified, are resistant to the potentially toxic chemotherapy. This allows the dose of TMZ to be steadily increased with each round of chemotherapy as the bone marrow – the most common site of side effects – becomes more resistant.”

The results are so promising that Dr. Sloan and his team have received interest from other clinical sites on the east and west coasts.

Never Alone

“It’s a balancing act, not wanting to overwhelm the patient with worry, but also wanting to help them sort through their options,” says Christopher Murphy, RN, a clinical trial nurse who works closely with patients like Simon. “Clinical trial nurses help patients navigate their journey. I believe in my heart that every patient needs hope to get through the day, so I never feel – no matter the prognosis – that we are giving any false hope.”

Clinical trials are the best way to learn the effectiveness of new treatments, according to Dr. Rogers, Medical Director, Neuro-Oncology Program, UH Cleveland Medical Center. They represent the cutting edge of therapies.

“The treatments that we consider standard of care today were established by clinical trials and shown to be effective,” says Dr. Rogers. “Andy Simon’s course demonstrates that people receiving treatment on a clinical trial can often continue their normal life activities. Andy has continued to lead a very full and active life and shows no sign of tumor regrowth after more than 10 months.”

When Simon returned to his job at a local wholesale food distributor after only missing 10 days – and he was still able to hoist 100-pound corned beef barrels – a co-worker started calling him Superman. The moniker took off, buoyed by remarkable clinical success and his zest for life.

He formed Team Simon Strong to raise $12,000 and counting for the American Brain Tumor Association. One week after completing a round of chemotherapy, he participated with 50 family members and friends in the association’s 5K in Columbus. He plans to celebrate his final round of chemotherapy at the Superhero run in September. And he won’t forget his cape.

No Stopping Him

“I don’t have time to be sick,” says Simon, who manages 50-hour weeks, starting at 4:30 a.m., and maintains a busy social schedule.

“Just because you’re labeled with cancer, it doesn’t have to be a negative,” Simon adds. “You can fight it. You can beat it. From the first day of treatment at Seidman I felt like part of their extended family. Everyone from lab techs to receptionists made us feel special.”

Amy Simon, Andy’s wife of four years, is surprised by her mood as she drives downtown to meet her husband in the calming, welcoming environment of UH Seidman Cancer Center, where staff members greet them by name.

“It’s not many people who could be driving to see their husband go through chemo with a smile on their face,” Amy says. “But we’ve become friends with these people. The support here is phenomenal.”