It’s been said “if you want to hear God laugh, tell him your plan.” My mom’s life plan was stopped short by a glioblastoma brain tumor — the same type of tumor that took John McCain’s life.
Just like many of the over 23,000 diagnosed with a primary brain tumor each year, my mom’s diagnosis was out of the blue. She never smoked, was very healthy and could run circles around someone half her age. Then, what was treated as a headache from an ongoing sinus infection turned grave overnight.
For 16 months after her diagnosis, she battled — and as her only daughter and a writer specializing in healthcare, I was her soldier. I found the best care, the best doctors and researched every treatment route possible. In the end, the tumor claimed victory and at the young age of 61 she passed away.
It has been years since my mom’s death and it’s still hard to talk about her illness. But a rare coincidence led me to write this personal post in hopes of making a difference.
Me & Mo
Recently I was referred to social media expert Monina (Mo) Wagner to help me with a new project, but soon found we shared a bigger connection beyond work: Mo’s mom had passed away from a glioblastoma and was treated by the same doctors as my mom. What are the chances?
Sharing our stories made me wonder what hope I can offer those facing the disease and how readers of this post can help change the future for them and their families. To start, I turned to one of my mom’s (and Mo’s mom!) doctors: David Peereboom, M.D. at Cleveland Clinic.
Dr. Peereboom is quite possibly the most calming man I’ve ever met. He’s also one of the most committed physicians who tirelessly look for ways to treat and, hopefully one day, cure cancerous brain tumors. As Director of Clinical Research at The Rose Ella Burkhardt Brain Tumor & Neuro-Oncology Center, Dr. Peereboom and his colleagues see approximately 100 newly diagnosed glioblastoma patients a year; a number that reinforces the need to find a way to help those with the disease.
When my mom and I first met with Dr. Peereboom she had seen countless specialists throughout Ohio. And even though the light of hope was quickly fading, he eased our minds. I haven’t seen or talked with Dr. Peereboom since my mom’s passing; I was thrilled he responded to my recent request and to hear his voice again.
Dr. Peereboom’s Perspective
Here’s a little from my conversation with Dr. Peereboom to help understand brain tumors and what treatment advancements are being made:
Is there a recurrent reason why certain people are diagnosed with a glioblastoma, and are cell phones a possible cause of the tumors?
Dr. Peereboom: We really don’t know why glioblastomas occur — there isn’t a common theme among those who are diagnosed. If anything, the primary theme are patients like your mom who were feeling fine and then devastatingly hit out of the blue with the disease. At one time, there were reports of cell phone use being a possible cause. But research and current statements have not shown cell phones to cause brain tumors.
What is today’s survival rate for those diagnosed?
Dr. Peereboom: If a glioblastoma is diagnosed between the ages of 20 and 44, there’s a 19 percent chance of survival five years after diagnosis; among those 45 to 54, survival drops to eight percent; and for older Americans aged 55 to 64, the five-year relative survival rate lowers dramatically to five percent.
Why are glioblastomas so difficult to treat?
Dr. Peereboom: I really don’t think there’s a cancer more difficult to treat than a glioblastoma. These tumors are very aggressive and invasive with tumor cells that spread away from the main tumor mass and embed themselves deep within the normal brain, hidden behind the blood-brain barrier. The blood-brain barrier protects the brain from naturally occurring toxins, but it also keeps most traditional chemotherapies from reaching tumors.
While we can often surgically remove the main central tumor mass and use chemotherapy and radiation to control the tumor, its finger-like nature causes it to protrude into other areas of the brain, preventing us from effectively removing it further through surgery. This causes treatment options to be very limited.
What type of treatment advancements are providing hope?
Dr. Peereboom: One of the most exciting new advancements is a catheter that delivers chemotherapy directly into brain tissues, circumventing the blood-brain barrier. Developed by my colleague Michael Vogelbaum, MD, PhD and Cleveland Clinic Innovations’ joint development with Parker Hannifin’s innovation and technology experts, the Cleveland Multiport Catheter (CMC) came from research that suggested liquids pushed slowly and directly into the brain would diffuse throughout the tissue without increasing cranial pressure. The first in-human clinical trials of the CMC in those with high-grade gliomas show promise, encouraging future use for brain tumor patients.
Another promising route for progressing treatment options are brain tumor clinical trials. These trials are designed to identify treatments that are potentially more effective and/or have fewer side effects than standard brain tumor treatments. We recommend clinical trials for essentially all patients with tumors at diagnosis and recurrence because we urgently need to improve our treatments for our patients.
At the Rose Ella Burkhardt Brain Tumor and Neuro-Oncology Center at Cleveland Clinic, we currently have over 20 clinical trials with about 80 patients participating each year. With the drugs and immunotherapies being tested, we are starting to see results we never expected.
What inspires you each day to treat a disease that is nearly impossible to manage?
Dr. Peereboom: I’m inspired by having the ability to offer experimental treatments with solid science behind them that go beyond typical care. I love the fact this gives more options for treatment — because of this we can offer patients hope for a longer life and a better quality of life.
While my mom’s brain tumor took her life, I often look at my loss as a gift. The gift of understanding the briefness of life, embracing those who make a difference in it and the opportunities I have to make a positive change each day. As the last quarter of 2018 begins, this may be the perfect time to make a difference for brain tumor patients and a future free of the disease by donating to the American Brain Tumor Association (ABTA). Or maybe get involved with local events that raise awareness and funds to continue life-changing research, including a Head For The Cure 5K Run/Walk taking place across the country. Whether it’s a gift of money or time, my friend Mo and I know our moms would be grateful.
Beth A. Kapes is Founder & President, Moving Words Into Action, LLC. Her mom always knew she would tell the stories that make a difference. Beth is on LinkedIn and Twitter, or contact her directly at firstname.lastname@example.org.