Patient Story: Making an Impact in Glioblastoma Treatment
by Guest Author
After his diagnosis of glioblastoma brain cancer, Rick Muchow gave testimony at Saddleback Church. Then he sought treatment at PNI. The research arm at Pacific Neuroscience Institute confronts some of medicine’s biggest brain tumor challenges.
Rick Muchow is a husband, father, pastor and musician with an abiding faith in God and a love of life. But in the winter of 2017 when he sat down at his piano or with his guitar, the music didn’t flow as it usually did. He was dizzy, and his right arm lagged when he moved it. When he stood up, his right foot settled at an angle. After talking it over with his wife, Laura, and making a trip to a local hospital emergency room, Rick learned in early February 2018 that he had a type of brain tumor called glioblastoma. The surgeon Rick initially saw in Orange County was candid; he said he could not attempt to remove the dangerous tumor because of its precarious location in his dominant motor cortex. This region of the brain directly controls and coordinates movement, and the surgeon did not think he could extract the tumor without causing paralysis. Without removing the tumor, however, the cancer would advance lethally with an average survival of only a few months.
That sounds like a hopeless situation, but Rick is not a hopeless man and neither were the team of doctors he consulted a few weeks later at Pacific Neuroscience Institute. Six months later, Rick is a survivor of a complex but ultimately successful surgery to remove the tumor, directed by neurosurgeon Achal Singh Achrol, MD, chief of the glioma surgery program. Rick is now participating in a state-of- the-art clinical trial under the leadership of Santosh Kesari, MD, PhD, PNI co-founder and director of neuro-oncology, aimed at prolonging his life. “One thing I like about working with Dr. Kesari is that he is open to all kinds of approaches,” Rick says. “He just wants to make headway and find a cure for brain cancer.”
Making progress against the most challenging neurological conditions is the goal of the Neuroscience Research Center at PNI. “For diseases like brain tumors, it’s hard to offer patients leading-edge treatments without doing research,” Dr. Kesari says. “It’s hard to push the boundaries and improve outcomes without research. It’s much more motivating and satisfying to take care of patients when you have innovative options.”
Multiple avenues of research are underway at PNI to advance diagnostic testing and treatments for a broad range of neurological diseases. Physicians and scientists are working together to research how specific changes in genes in our DNA can affect disease processes and how those changes can be targeted in each patient with specific, personalized therapies. They are helping advance blood testing technologies that can detect cancer at its earliest stages and are exploring the use of stem cell therapies to help promote healing of injured brain tissues in stroke and traumatic brain injury patients. And they are leading numerous clinical trials involving promising new treatment options and personalized drug combinations to shrink brain tumors like glioblastoma.
“Our clinical trials can involve drugs, devices, stem cells or digital technologies,” Dr. Kesari says. “The growth of our clinical trials program over the past two years has been amazing and very rewarding. We currently have more than 20 open clinical trials and are continuing to open more every month.”
MEET THE TEAM
More than 70,000 Americans develop a primary brain tumor annually, and another 250,000 are diagnosed with a metastatic brain tumor from a cancer that begins outside the brain, such as lung cancer or melanoma. Glioblastoma is one of the most common and lethal types of brain cancer. Rick knew what he was up against and sought a second opinion after his diagnosis. A friend suggested he make an appointment at PNI. He was impressed and heartened that PNI physicians seemed well armed for the challenge.
“We were looking for the best programs we could find in California,” says Rick, who served for 24 years as a pastor at Saddleback Church in Lake Forest, California, and is now a professor at California Baptist University. “The first place we interviewed was at Providence Saint John’s Health Center. The whole team at PNI greeted us, and we knew this was the place for us.”
The team approach is what makes PNI care exceptional, says Dr. Achrol, director of the neurosurgery clinical trials program.
“This is a unique aspect of our approach; patients do not require multiple clinic visits. They get a comprehensive evaluation all at once from all our specialists in one clinic visit,” Dr. Achrol says, noting that the team often receives complex cases. “The vast majority of our patients have received other neurosurgical evaluations prior to seeing us—often multiple evaluations. In our glioma surgery and neurosurgery clinical trials program over the past six months, patients have traveled here for surgery from throughout California and at least a dozen other states or countries after receiving other medical opinions.”
AT THE FOREFRONT OF TECHNOLOGY
Rick chose PNI for his care and underwent surgery on February 28, 2018. Dr. Achrol performed the procedure using a combination of highly advanced technologies including stereotactic MRI, intra-operative ultrasound and fluorescence-guided microscopic dissection with ultrasonic aspiration. Throughout the procedure, the team performed motor and somatosensory electrophysiologic neuro-monitoring and direct cortical mapping—tools that help ensure maximal tumor removal while minimizing risk of new brain injury.
“We have a high volume of experience with this particular type of brain tumor surgery. Rick’s tumor was a challenge given its growth directly in the dominant motor cortex, but we felt that it could be safely removed using a combination of the newest surgical technologies that we now use for these complex cases,” Dr. Achrol says. “The result of Rick’s surgery was the successful complete removal of the tumor mass. However even when no residual tumor is seen on imaging after surgery, glioblastomas are highly invasive cancers, so surgery is always followed by treatments that target the microscopic infiltrating tumor cells that remain, as these are the cause of recurrence and treatment-resistance.”
Before surgery, Dr. Kesari had hoped Rick might become a candidate for a newer therapy as part of an advanced clinical trial that aims to better target these microscopic tumor cells. In order to be eligible, though, it was necessary to remove the vast majority of the tumor.
After surgery, which successfully removed the tumor, Rick became eligible for a clinical trial where he receives infusions of two immunotherapy drugs on a rotating basis. The drugs, which have been shown to be effective for some patients with other types of cancer, are designed to allow the immune system to recognize his specific cancer and attack it. The hope is that the drugs, used together, will fight off any remaining cancer cells.
Rick didn’t hesitate to try the new treatment approach which promises fewer and less extensive side effects. “The standard of care meant they would treat you for a while, and then you would die,” he says. “The new immunotherapy clinical trial at least offers a glimmer of hope. There are no guarantees, but there is hope.”
At PNI, research ranges from basic, laboratory exploration to studies on quality of life. Basic research in drug discovery for Alzheimer’s disease, Parkinson’s disease and other brain diseases is under the purview of Venkata Yenugonda, PhD, director of the drug discovery and nanomedicine research program at the John Wayne Cancer Institute. At the other end of the research spectrum, Marlon Saria, PhD, RN, director of the Center for Quality Outcomes and Research at PNI, is leading research to understand the impact of neurological disorders on caretakers and on patient and caregiver quality of life issues.
By combining laboratory and clinical data through translational research programs, PNI can provide patient-specific therapies. “What we’re interested in is really making a transformational impact in high-need areas, such as brain cancer, dementia and stroke,” Dr. Kesari says.
GOING THE EXTRA MILE
Rick is doing well since starting the treatment in April 2018. After one recent infusion, he walked 26 blocks down Santa Monica Boulevard to enjoy lunch on the beach. He recently resumed kayaking—a sport he loves. “I feel fantastic. I’m glad I’m not having side effects at this time that keep me from being productive,” Rick says. “It’s very exciting to be a part of science like this. They are learning from my case. That’s a cool thing.”
His PNI doctors are monitoring him closely and are pleased too. “The initial results from this trial are very exciting. We can see signs that the drugs are having an impact. But it’s still in the early days, and the study will mature over the next year,” Dr. Kesari says.
The clinical trial that Rick is participating in was created and designed at PNI, and this initial study is funded by the Phase One Foundation— a Santa Monica-based organization that provides resources to launch promising, early-phase studies that may not receive federal research dollars.
“It’s always tremendously rewarding getting our patients safely through these complex surgeries, improving their quality of life and overall survival. But our team will not be satisfied until we have achieved a cure for these patients,” Dr. Achrol says. “We are already hard at work comprehensively profiling and learning from the molecular data in Rick’s tumor and launching new clinical trials that can hopefully help Rick and our other patients live longer, with better overall quality of life.”
Rick Muchow’s surgery included leading-edge technologies, such as:
- Stereotactic neurosurgery: A minimally invasive surgical technique that uses a three-dimensional image guidance system to precisely target the tumor.
- Intra-operative ultrasound: A technique to provide real-time, precise images during surgery.
- Fluorescence-guided microscopic dissection: An integrated microscope that provides high-resolution images to help the surgeon visualize and remove the entire tumor.
- Cortical mapping: A technique to identify which parts of the brain perform specific functions so that a tumor can be removed without damaging important brain structures.
Written by Shari Roan. Adapted from Pacific Neuroscience Institute Magazine | Brain Matters Fall 2018
Novel Glioblastoma Trial Begins Immediately
Last updated: August 2nd, 2019