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.
This is why I donate to Dana-Farber. We lost a family member to glioblastoma and know how difficult it is to treat. I now have a dear friend visiting DF for treatment on a different type of brain tumor. Every tiny step in the process of understanding and treating these diseases is critical to many patients.
I am coming up on 2 years since diagnosis GBM grade IV. I’m so blessed yet everyday feel like I’m living in fear. Thank you for blog. For sharing. Hugs to all. Katie
I can attest to Mr. Benoit’s success. After a similar diagnosis in October of 2005, (Grade IV Glioblastoma, frontal lobe) I underwent surgical removal, radiation and chemotherapy, using the oral chemo drug Timidor. While not performed at Dana-Farber, the radiation oncologist gave me a 12 to 14 month life span. After getting a second opinion at Moffit Cancer Center in Tampa, FL, a glimmer of hope. “Stephen” he said, “there’s no reason we couldn’t be having this conversation ten years from now.” I’m living proof, and beat the odds.
My Dad died of glioblastoma in May 1985 – only being diagnosed in March 1985. I wish that he had been offered clinical trials then, but I am quite sure these weren’t available at that time. I pray that they continue to work on finding a cure. I am so happy for you who have survived so long and still continue to do so. My prayers go out to all of you.
Thank you so much for sharing. On September 27, 1997, my 7-year-old daughter was diagnosed with MedullaBlastoma. She was immediately scheduled for surgery and, after last rites had been given, she looked me in the eye and said “Dad, I’m scared.” As a father in a situation like that, you say what you need to say, even if you have to lie a little. Surgery took only 8 hours, but to my wife and I it felt like three days. Resection of the tumor was successful, but it was malignant. She received treatment under the care of Dr. Charles Roberts, MD, PhD of Dana Farber (at the time; he is now a member of the faculty at St. Jude Children’s Research Hospital, Executive Vice President, Director of the Comprehensive Cancer Center, and Director of the Molecular Oncology Division) and a team of dedicated and amazing doctors and nurses and the Jimmy Fund Clinic at Dana Farber. She underwent six weeks of full cranio-spinal radiation, with intensified dosages at the base of her skull, and 14 months of chemotherapy. Watching your young child struggle with pain is excrutiating, as many parents of pediatric cancer victions have learned. Just to complete this story, yesterday (21-and-a-half years later) my daughter stopped by the house to help me with a project I’m working on. She has a driver’s license, a Bachelors Degree and a Masters Degree from the University of Massachusetts, lives in a condo she purchased with her husband, is loving and intelligent, a superb daughter and sister, has a keen and quick wit, and is without doubt the best slalom water skier in our family–much to the amazement of many, including her doctors. Taking her for an early morning waterski is, and will always be, my favorite thing to do in life, as long as we both shall live. The life lesson? Never, ever, lose hope, even during the darkest hours. Do not underestimate the power of pure love, come what may. And do what you can to help those brilliant, dedicated people who are drilling down, and trying hard, to find the ultimate solution to the horrific problem of cancer.
Dear Brackett,
Thank you very much for sharing your story and for the kind words. We are wishing you and your family all the best.
Best,
Megan Riesz
Dana-Farber Communications
Amazing story. Thank you for sharing. Early morning slalom sessions with your daughter sounds like a dream come true.
Thank you for sharing your daughter’s story. It is one of the most inspiring things I have ever read. I am a Dana-Farber patient too.
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
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.
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.
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.
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