Virgil Enos Tackles Glioblastoma Multiforme with a Glass Half Full
Helping others can provide a sense of purpose, aid in keeping things in perspective, and may even contribute to a longer life. In 2020, a diagnosis of glioblastoma multiforme (GBM) came as a shock to Virgil Enos, but today, more than 4 ½ years later, he mentors others with GBM as a volunteer, offering moral support and sharing his knowledge of the disease and treatment. Asked what keeps him going, he answers, “What’s to make me stop? I like life and living. But it must have some meaning. I can’t mow the grass just because it needs to be mowed. I work hard at maintaining a positive attitude to provide value to my family, my mentees, my medical team, and myself.”
Enos started noticing problems in mid-October 2019, when he was 66. “Something wasn’t right. I was always good at multitasking, and then I discovered I could do only one thing at a time,” he recalls. “Before long, I began to have headaches, some vision problems, and balance issues, but these were not constant. Generally, I could wait 30 minutes and things would be fine again. I didn’t have a primary care physician and started looking for one but didn’t have any luck.”
By mid-January 2020, Enos was having two or more episodes a day. After dinner on Sunday, Jan. 19, he and his wife, Yvonne Enos, drove to an emergency center close to their home in Santa Fe, Texas. An emergency physician reviewed his CT scans and arranged a transfer by ambulance to Memorial Hermann Southwest Hospital, where he was admitted immediately with a suspected diagnosis of GBM. He met his UTHealth Houston Neurosciences care team: neurosurgeon Joseph Cochran, MD, assistant professor in the Vivian L. Smith Department of Neurosurgery at McGovern Medical School at UTHealth Houston; neuro-oncologist Jay-Jiguang Zhu, MD, PhD, professor of neurosurgery and director of neuro-oncology at McGovern Medical School; and radiation oncologist Mark Amsbaugh, MD, also in the Department of Neurosurgery.
The team moved quickly. “On Tuesday, they told me I was going to have a craniotomy on Wednesday. On Thursday, after I had recovered enough for them to talk with me, they said I’d be discharged on Friday as the patient of Dr. Zhu,” Enos says.
Pathology samples taken by Cochran during surgery confirmed a diagnosis of GBM, IDH1-wild type, WHO Grade 4, methylguanine-DNA methyltransferase (MGMT) methylated. His physician team met with other members of the multidisciplinary brain tumor board to discuss the diagnosis and decide on a recommendation for treatment.
“We were pretty much in shock,” Enos says. “I haven’t had the healthiest lifestyle but have taken care of myself, running and cycling over the years. Of course, we wanted to know the prognosis. If you look up the GBM statistics, you’ll see that the average survival is 14 months after diagnosis. Dr. Zhu does not discuss that data and survival with his patients because there’s so much uncertainty. That frustrated us at first, but now, more than four years later, we understand why. Many survive much longer.”
Enos and his wife decided to move forward with standard-of-care treatment for GBM: 42 days of 30 fractions of external beam radiation therapy by Amsbaugh, which Enos finished on March 25, 2020, and concurrent daily temozolomide, a chemotherapy, which he started again four weeks after the radiotherapy. He also began using Tumor Treating Fields (Optune®), a noninvasive device worn on the head that uses alternating electrical fields to pulse through the scalp and disrupt tumor cell division or cause cell death.
In August, when Enos’ MRI studies showed suspected GBM progression, he underwent an awake craniotomy by Nitin Tandon, MD, professor of neurosurgery at McGovern Medical School and director of the Epilepsy Surgery Program at Memorial Hermann-Texas Medical Center. Tandon is BCMS Distinguished Professor in Neurological Disorders and Neurosurgery and the Nancy, Clive and Pierce Runnells Distinguished Chair in Neuroscience of the Vivian L. Smith Center for Neurologic Research at McGovern Medical School and vice president for strategy and development at UTHealth Houston Neurosciences.
“The enhanced areas on contrast MRI were removed by Dr. Tandon,” Zhu says. “They were mostly necrosis with a small proportion of recurrent GBM cells, according to the pathology report. Virgil recovered nicely from the surgery and, after discussion with our brain tumor team and his agreement, he resumed the temozolomide. In late August he started irinotecan, and in September, we added bevacizumab (Avastin®) — a regimen of triple chemotherapy.”
He continued the program of triple chemotherapy for several months but, ultimately, his tolerance diminished. “Frankly, it sucked,” Enos says.
Because the quality of a patient’s life is of prime importance to the brain tumor team, Zhu stopped the triple chemotherapy progressively in 2021. Zhu dropped temozolomide in August, irinotecan in September, and bevacizumab in December. During that same period, Enos started off-label use of osimertinib (Tagrisso®), a targeted therapy for epidermal growth factor receptor (EGFR) mutant non-small cell lung cancer. Genetic testing using next-generation sequencing of his tumor tissue showed he had an EGFR mutation. He also told Zhu he would like to donate his body to UTHealth Houston for medical research.
Eighteen months after beginning treatment, Enos lost all vision in his left eye due to a radiation-related optic nerve injury. “Otherwise, everything was fine until October or November of 2023, when I started feeling tired,” he says. “I had new tumor growth, and after an MRI in February 2024, I had Gamma Knife® radiosurgery with Dr. Amsbaugh, followed by a short course of triple chemotherapy.”
Yvonne Enos recalls that although he got through them, the treatments were taxing on her husband. “He had side effects from the pills and needed extraordinary amounts of sleep. During this time, he told Dr. Zhu he had decided to stop chemotherapy but would continue osimertinib and Optune, both of which he’s still using.”
Now 70, Enos, whose professional background is in engineering and computer science, has had his ups and downs. “I have good days and bad days, but on the good days, I do well. A lot of people have been through as much or more,” he says.
He started mentoring other patients with GBM in 2022, volunteering with the American Brain Tumor Association and working with others referred to him by Zhu through the UTHealth Houston Neurosciences’ monthly support group. His mentees live in cities across the United States; they communicate via Zoom, email, text, or phone call.
“I’m currently working with nine people,” Enos says. “Some are periodic, and I’m in touch with others regularly. I call and ask what I can do to help, offer moral support, and share my knowledge and experience with the disease and treatment. Mentoring adds a lot of meaning to my life. My goal is to make life easier for my family and the people around me, and to help others as much as possible.” Enos was instrumental in initiating quarterly video meetings with other American Brain Tumor Association mentors to improve coordination of the mentorship program.
“Virgil loved mentoring interns and younger co-workers when he was working full time,” Yvonne Enos says. “Having the opportunity to help others on a personal level adds enormous meaning to his life.”
Zhu attributes his longevity with GBM to his personality and family support, particularly that of his wife. “He’s willing to share his experience and has talked to many, many other patients, who find his story inspiring,” the neuro-oncologist says. “He also gives our team feedback. Not all of it is positive, but that’s good because it helps us improve the care we provide to him and to other patients.”
“I like Dr. Zhu a lot,” Enos says. “He works to understand my needs and capabilities and to help me through the GBM puzzle. He is quick to point out risks and issues but also cautious about providing what may turn out to be unneeded information.
“You would think I’ve learned a lot from this experience, and I have, but not anything mind-blowingly different. I always knew I was strong and could take anything thrown at me, but it was a shock to learn at the age of 66 that my life expectancy had gone from 100 years to 68,” he says. “Life is short. Learn to use your time wisely and in everyone’s best interest. Make your wishes known and prepare a plan for those who are left when you’re not here. And no matter how much you love your work, there are other things in the world that are important, like spending time with your family and friends.”
Virgil Enos’ Medical Treatments for GBM
Therapies as of June 2024 | ||
---|---|---|
Craniotomies | 01/22/20 | 08/20/20 |
External beam radiation with temozolomide | 02/13/24 | |
Optune TTF | 04/01/20 – Current | Ongoing |
Temozolomide | 04/28/20 – 08/24/21 | 16 months |
Irinotecan | 08/29/20 – 05/27/21 | 10 months |
Bevacizumab | 09/10/20 – 12/02/21 | 16 months |
Osimertinib | 05/14/21 – Current | Ongoing |