Glioblastoma Survivor is Thriving Seven Years After Diagnosis

Charlie Benoit was told that he had a long road ahead of him when he was diagnosed with glioblastoma in 2011. More than seven years later, he’s still doing well—and by studying patients like Benoit, researchers hope to help other patients with this incurable form of brain cancer.

In 2011, Benoit, then 48, was getting ready to switch careers. The pharmaceutical representative had recently obtained his teaching license and was set to begin his first year as a high school science teacher.

But Benoit wasn’t able to enjoy the lead-up to the first day of school. In less than a month, he was involved in three minor car accidents, and he feared that something wasn’t right.

After Benoit’s optometrist noticed his vision in the lower right side of both eyes was severely limited, she demanded he see a neurologist. Within a few days, an MRI revealed a large mass, which sent Benoit to the emergency room.

“As the emergency department doctors and neurologists talked, I got up and started dancing with my wife,” Benoit says with a smile. “I knew if we didn’t laugh, we were going to cry.”

Charles Benoit.
Charles Benoit.

In less than a week, surgery was performed by Rose Du, MD, PhD, who was able to completely remove Benoit’s tumor. Weeks later, the pathology report revealed the diagnosis: Benoit had grade IV glioblastoma with an unfavorable MGMT marker , a diagnosis that carries an average life expectancy of 12 to 14 months.

Benoit immediately enrolled in a clinical trial under the care of David Reardon, MD, clinical director of the Center for Neuro-Oncology at Dana-Farber. The trial was testing the addition of a new PI3K/mTOR inhibitor—which aims to stop enzymes that play a central role in tumor cell growth—to the standard therapy for glioblastoma: radiation and chemotherapy.

After starting treatment, Benoit was forced to retire from teaching, since he had occasional short-term memory loss and couldn’t concentrate throughout the day. This development led to major bouts of depression, which Benoit learned to cope with after joining a cancer support group in Norwell, Mass.—one town over from his home in Scituate, Mass.

 “I needed to talk to someone who’s been through a cancer diagnosis before I could overcome my own,” he says.

Benoit finished chemotherapy in 2012 but continued taking the PI3K/mTOR inhibitor until it was discontinued in 2017, when researchers found that the addition of the inhibitor had not proven to be better than just radiation and chemotherapy. Benoit hasn’t received treatment since, but still meets with Reardon every other month for check-ups—and his tumor has not come back, despite the odds.

Benoit is now part of a small—but growing—group of brain tumor patients who are doing well long-term; the reasons behind this trend are not yet clear, according to Reardon. One current study aims to identify differences between patients like Benoit and patients whose tumors return quickly; researchers theorize that there could be differences in their immune systems. Immunotherapy also remains an area of focus for researchers; so far, it has shown promise in some clinical trials, but can’t yet be called a major advance against brain tumors.

“There is a desperate need for better therapies for brain cancer patients, and by studying patients like Charlie Benoit, I believe we are on the verge of getting there,” Reardon explains. 

Since his diagnosis, Benoit has participated in several patient support groups, including Dana-Farber’s One-to-One program. He has also been featured on the WEEI/NESN Jimmy Fund Radio-Telethon presented by Arbella Insurance Foundation, and last year, he served as the 2018 “Walk Hero” for Team Neuro in the Boston Marathon® Jimmy Fund Walk presented by Hyundai.

“I refuse to sit on the sidelines,” Benoit says. “I’m jumping in with both feet and looking to help in any way I can.”

Benoit is also grateful for the family milestones he’s been able to take part in, including two of his three sons’ graduations from high school—and he is looking forward to his eldest son’s upcoming college commencement ceremony.

“I’ve gotten to see some great things in my life—things I’d never thought I’d see, and I am truly thankful for that,” he says.

30 thoughts on “Glioblastoma Survivor is Thriving Seven Years After Diagnosis”

  1. Congratulations Charlie and thanks to your positive approach. Believe me, you are one of the lucky one. My wife, a pediatrician, of almost 40 yrs, succumbed to this disease at age of 63, in spite of her giving positive and courageous battle at Dana Farber with excellent care and support – after undergoing two surgeries, two cycles of radiation rx and 3 different clinical drug trials. She passed in 07/2018.
    You deserve lots of kudos! Keep up the good work with your medical team.

    Shanti Kenia

  2. I hope that each of these Survivors and Thrivers would join us on our Facebook GBM Support page called – GBM Survivors and Thrivers

    Having you be part of the conversation would be so beneficial to those just beginning their GBM journeys.

  3. I was directed to this story from a facebook page I am following. I am going on 18 years as a GBM survivor / thriver. I was diagnosed in 2001 and given standard care but also used holistic and natural therapies working together to fight the tumor and recurrence. Reike self healing, medicinal mushrooms and the power of positive thinking were instrumental in my success. I will always give the glory to God as well. I am sharing to give hope in a rather “hopeless” diagnosis. I speak around the country in business settings, I am an active triathlete, and I live a very full and happy life. There are always outliers, miracles, and other extraordinary stories to keep us hoping for a better tomorrow! God Bless all the GBM Warriors and their caregivers.

  4. thank you all for sharing your stories.
    also I think positive thinking has helped and my family and friends.

    thank you
    Donna Burgess
    Lynn.Ma.

  5. Thank you all for sharing your stories it gives me more hope. I was just diagnosed in Feb 2018 had surgery by Dr Rose Dhu also she was great. Also had Chemo and radiation treatment. didn’t qualify for trial drug. with my family and friends And god everything will work out

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