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.”
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.
As a person with the same diagnosis, this story inspires hope for my own cancer journey.
Thank you for your inspiring story. Someday I hope that my story may be an inspiration to others. George T.
I too am a survivor. I was diagnosed with a stage 4 GBM in June 2014 and given 6 months max if I survived surgery. I’ll soon have my 5 year anniversary and am doing well. God bless the researchers and survivors!!!
Portia, that is so encouraging. In the spring of 2015 my mother began having trouble remembering how to spell simple words/names. Unfortunately, she was diagnosed with stage 4 GBM in early July 2015. She had surgery seven weeks later (mid-August) with 99% of the main tumor—a golf ball sized cyst located in Wernicke’s speech area of the brain—successfully removed. There was also a single small secondary tumor at the very top of her head that would be targeted in the radiation treatments that followed.
Dr. Reardon and the rest of the team at Dana Farber have been wonderful, and my mother has been doing pretty well 3.5 years later. She hasn’t been taking any chemo agents for ~18 months, just a few cycles of Avastin, which appears to be helping. Before that she was getting periodic infusions of Gleostine (chemo) for about 10 months or so. Her reading/writing, though improved, has been impaired significantly and her memory has been deteriorating as of late; but she is still highly functional, and her doctors say she is definitely among the exceptions to the rule when it comes to GBM.
Good luck in your journey, and God bless!!
Such wonderful news, a wonderful person receiving the best care, very hopeful.
Proud of you Charlie !
This article came up on my feed this morning as we lost a dear friend last night to this disease.
Thank you, Charlie and Dr. Reardon for not giving up and to finding better treatments to fight this disease.
Please join us in GBM Glioblastoma Survivors to Thrivers Facebook group!
Hello…we can attest to Mr. Benoit’s success; my wife Suzanne was diagnosed in September 2006! She was placed on a trial treatment after receiving the chemotherapy and radiation. Now, 12.5 years later she is still with us and doing well. She is dependent upon a walker and a wheelchair but her spirits and diagnosis has positively continued! We thank our doctors at Brigham Women’s, Dr. Mark Johnson who performed the surgery in September 2006, and then off to Dana Farber to meet with the Neuro-Oncology Department, first, Dr. Drappatz and later and currently with Dr. David Reardon and their staff. We visit every four months to have an MRI and a neurological exam. Good fortune has found its way into the Anderson Family of Milford, MA. Andy and Suzanne Anderson
Hello…..the Anderson family has gone through a glioblastoma 12.5 years ago…it was September 2006 when Suzanne, my wife was diagnosed. She had the surgery but also need chemo and radiation. The great doctors at Brigham’s, Dr. Mark Johnson performed the surgery and at Dana Farber, the Neuro-Oncology department of Dr. Drappatz and Dr. David Reardon and their great staffs have been involved in Suzanne’s great success. Her mobility has been compromised; she needs a walker and wheelchair but has physical therapy three times a week and she is doing fine. Her progress for 12.5 years has been a blessing; we sincerely thank all the doctors at both Brigham and Women’s and Dana Farber for preserving and extending the life of someone very special to our family. Always believe there is hope! Francis and Suzanne Anderson
My boss was diagnosed with a glioblastoma in 2001 and lived until 2018. He was the longest survivor of this type of brain tumor.
You are a bright light in a cloudy world by giving others hope and inspiration to continue their battle against this monster called GBM!
Empty inside. My 32 yr old is pallative care and struggling to survive.. After surgery, 4 chemos radiation and proton beam there are no other treatment options. We are still fighting?
As a fellow patient, Charlie Benoit & Suzanne Anderson give hope to us all.
Keep up the good fight!