Vic’s story: Glioblastoma and a ‘Magic Johnson miracle’
January 18, 2017
My passion to drive medical advancement is motivated by a race against time. Often, one of the first questions we hear from a person newly diagnosed with cancer is, “How much time do I have?” As physicians, we want to give them an accurate prognosis – along with as many days, months, and years as we can.
A recent discovery of an abnormal gene in some glioblastomas – an aggressive form of brain cancer – and a revolutionary imaging procedure for brain tumor diagnosis has allowed us to give patients more accurate prognoses and opened the door for some patients who originally had few treatment options.
You can learn more about these medical breakthroughs in this video, but I also wanted to give a patient who played a role in these discoveries a chance to tell his story.
Vic Zanetti was diagnosed with glioblastoma in 2007. His prognosis at the time was quite poor – he was given about 15 months to live. But through these medical advancements, we discovered his tumor had a specific mutation (IDH1), which makes it slow growing and highly responsive to treatment, and he had more time than initially thought. Ten years later, he’s still healthy and playing basketball several days a week!
Here is Vic’s story in his own words.
Not just a sinus infection
It all started with a series of headaches over the course of a few months. I’ve been an athlete my whole life and have a pretty high pain tolerance. The headaches never really knocked me off my feet or made me bedridden, so I just went about my business and didn’t give them much thought, even though I was gobbling down Advil.
Then, while picking up my wife’s birthday cake, I noticed a few fingers on my left hand were numb. I told my wife, Jill, about it. She said, “That’s it – we’re going to the doctor.”
I thought I must have a sinus infection, so I told her I’d just run down to the urgent care clinic in the morning and get some antibiotics. She said she’d go with me. It turned out the clinic didn’t open until noon that day, so we went to the emergency room down the road.
The doctors did a CT scan, and the results showed some type of growth in the right frontal lobe of my brain.
The hospital I was at didn’t have a neurologist on staff, so they made a few recommendations, including Zale Lipshy Pavilion – William P. Clements Jr. University Hospital at UT Southwestern. I’m a lawyer and have represented Zale Lipshy Pavilion since its formation in the early 1980s, so I was familiar with the brilliance of its neurosurgery department.
I thought I would schedule an appointment in the morning but instead was told they’d called for an ambulance to take me there. That’s when my wife and I started to freak out a little.
A grim diagnosis
I was immediately admitted to the intensive care unit, and Bruce Mickey, M.D., came to talk with me. He is the Michael Jordan of neurosurgery, and I’m eternally grateful he took my case.
I was told the growth was egg-sized, which seemed unreal to me. Dr. Mickey helped me keep my emotions in check. He gave me the reality of the situation but reassured me it wasn’t the end of the world. I actually started to get a little cocky. I thought, “No big deal. He’ll take it out, throw it in a petri dish, and it’ll be noncancerous.”
I prayed before surgery that I would come out of it neurologically sound. I told myself I would take whatever diagnosis came my way, but I wanted to be fully functioning. I woke up after the five-hour surgery and could tell right away that everything was working. It was a huge relief.
I couldn’t believe how quickly I recovered from surgery. I was up walking the morning after and discharged three days later. I also was thankful I didn’t look like Frankenstein!
We got the results from the surgery 10 days later: grade 4 glioblastoma multiforme, the most aggressive form of this type of tumor. My wife later said she knew it was bad because when Dr. Mickey arrived, the room didn’t light up like it normally did when he walked in.
Dr. Mickey warned us not to Google glioblastoma multiforme when we got home, but of course we did. And we nearly fell out of our chairs reading about it. He said it was serious, but he also told me I had a few things going for me: I was young (50), healthy, and determined, and while technically they had to type it grade 4, it was a borderline grade 3/grade 4 tumor, so not the worst of the worst.
We met soon after with Robert Timmerman, M.D., and Dr. Maher to discuss radiation and chemotherapy. Dr. Maher said it was a good news-bad news situation. The bad news was that I had a stage 4 glioblastoma multiforme, which had a survival rate of about 15 months. The good news was that treatment for it was light years ahead of where it was 10 years ago.
Looking to Magic Johnson
I was depressed after the initial diagnosis. I sat at home and thought, “Why bother?” Finally, I told my wife, “Sweetie, I’m going to the office. I’m going to sit in my chair and go through emails. I need to get my mind to where I’m going to serve clients for 15 years, not 15 months.” It became mind over matter.
I also decided I was going to be like Magic Johnson. HIV was a death sentence at the time of his diagnosis, but he didn’t give up. Medical advancements allowed him to keep playing and living his life. So I thought, “I’m going to get on the treadmill and outrun this disease long enough for modern medicine to catch up.”
Treatment and medical breakthroughs
I had six weeks of radiation therapy followed by about a year of chemotherapy. I was stunned by the technology – it was like “Star Wars.” I was fitted for a mask that helped direct the radiation directly to the tumor site. I also took a pill, Temodar, that sent chemotherapy straight to the brain.
I was fortunate that I never really got sick during treatment. It made me tired, but I was able to work full time and continue to exercise like normal.
When I finished chemo, I returned for an MRI every two months. Eventually, I reached 15 months after diagnosis – which was my initial prognosis – then 18 months, then two years, then three years. Each imaging session showed the tumor wasn’t growing. Now I go in every four months.
At one point, Dr. Maher asked me to come in for a research MRI. This was part of the breakthrough in which they found that patients who have a certain gene abnormality, isocitrate dehydrogenase (IDH), in their tumor survived longer.
I already knew I was lucky, but learning I had this gene meant I had a better chance of being a long-term survivor and made me feel I better keep doing what I was doing.
When I heard about the IDH breakthrough, I thought it was my Magic Johnson miracle. Medicine caught up and all of a sudden I had a long, bright future in front of me. And this miracle might not be the last one. I’ve just got to keep running.
Getting my priorities straight
I was scared the day they discovered a growth in my brain. But I’m embarrassed to admit that as I was in the ambulance, I also was annoyed that I was losing a day at the office. I kept thinking about all the work I needed to get done.
I’ve changed since then. I stopped missing soccer games and dance recitals. I still love my job, but my work-life balance has improved.
That doesn’t mean I don’t find myself falling back into bad habits at times. After my MRIs, Jill and I would always go out for breakfast to celebrate, and I’d call my parents to let them know how it went. After a while, I started to think, “What’s the big deal?” I was too busy to go to breakfast or to make that phone call.
Then about nine months ago, we had a scare. Something showed up on the MRI. Thankfully, it turned out to be nothing. But the experience jolted me back into reality. This tumor is not gone, and I need to cherish and celebrate every positive MRI.
I have a friend whose mom had throat cancer and was supposed to be dead five years ago. I was talking about listening to people complain about the small stuff in life, and she said, “They don’t know, Vic. Every day above ground is a good day. All the rest of this stuff doesn’t matter.” And that’s exactly right.
If you find yourself facing a situation similar to mine, don’t give up. Go about your life like it’s not going to end too soon, because hopefully it won’t. Modern medicine is powerful. It can create miracles.
Vic’s right. We learn something new through every research project and clinical trial. These recent breakthroughs are just the tip of the iceberg in terms of the next frontier of discoveries to help us diagnose and treat conditions such as glioblastoma and lower grade malignant gliomas.
You may be able to play a role in advancing medical knowledge. Ask your doctor if you’re eligible for a clinical trial.