Ivy Blog
Young, Healthy and Living With Brain Cancer
“It was a ‘this-doesn’t-happen-to-me’ moment,” Marcus Jones recalls.
It was the middle of the night and he was sitting in an emergency room, having been woken up an hour earlier by a severe headache. After enduring these debilitating headaches for 12 days straight, Marcus finally listened to his mother’s insistence and decided to get checked out.
Doctors said his headaches were due to a large mass in his brain, likely a brain tumor.
“That couldn’t be right,” Marcus remembers thinking. Just a couple weeks prior, Marcus, an active 25-year-old, completed a Half Ironman, a race that includes a 1.2-mile swim, a 56-mile bike ride and a 13.1-mile run – 70.3 miles in total. He felt healthier than ever. The last thing he expected was a brain tumor.
The news was a shock. Marcus knew nothing about brain tumors or what the diagnosis would bring. Rather than thoughts of brain surgery and treatment options, Marcus wondered how to tell his parents. He didn’t want to worry them.
Early the next morning, Marcus sent a text to his mom and dad from the hospital to break the news. Their immediate response was, “Marcus, that’s not funny.” To prove the seriousness of his situation, he sent a photo of his surroundings. His parents rushed to his side and began the work of researching neurosurgeons and treatment options.
Their efforts led them to the Ivy Brain Tumor Center at Barrow Neurological Institute. Marcus’ neurosurgeon, Dr. Nader Sanai, performed a six-hour surgery to remove the brain tumor – it was the size of a giant fist. The diagnosis was a grade 4 astrocytoma with an IDH wild-type mutation, an aggressive, cancerous tumor that arises from mutated star-shaped cells in the brain. Treatment typically consists of surgery, radiation and chemotherapy.
Astrocytoma statistics
The average survival for a grade 4 astrocytoma is 12-18 months. Typically, only 25 percent of patients survive more than one year, and only 5 percent survive more than five years.1 The median age at diagnosis is 46 years old for low-grade tumors and 54 for high-grade tumors. However, approximately 12,800 adolescents and young adults aged 15-39 are diagnosed with a primary brain tumor each year.2
Those statistics didn’t cross Marcus’ mind, though. He didn’t think about survivability or life expectancy. He was determined to regain his strength, move past this and pretend it never happened.
It was Alishia, his mom, who carried the mental and emotional load of the diagnosis. To educate herself and understand the journey they were facing, Alishia researched the diagnosis, joined brain tumor support groups on social media and connected with other mothers facing similar challenges.
As mothers often do, she feared the worst.
Seeking a second opinion, the Jones family visited another prominent cancer center where doctors advised Marcus to continue treatment at the Ivy Center and explore the clinical trial options available to him. They emphasized that with these types of tumors, it isn’t a matter of “if” it comes back, but “when.”
“That statement really stuck with me,” Alishia says. “It’s always in the back of my mind.”
Turning to experimental therapies
Marcus enrolled in an Ivy Center Phase 0 clinical trial that was tailored to the molecular composition of his tumor. The trial tested niraparib, a drug that blocks the tumor cells’ survival response. Niraparib is currently FDA approved for the treatment of advanced ovarian cancer.
Marcus took the drug for three days before surgery. After surgery, the tumor tissue was tested to examine whether the drug crossed the blood-brain barrier, reached the tumor and had its intended effect. The drug was successful and achieved its objectives. Marcus moved on to the expansion phase of the trial and continued to take the drug.
As is common in clinical trials, the Ivy Center’s research team had to fine tune the proper drug dosage. Marcus’ platelet levels dropped slightly due to the drug’s side effects, but he found that papaya root extract effectively raised them.
“Part of the reason you take the risk and participate in a clinical trial is that you hope for this. You hope it works and turns into something others can benefit from,” Marcus says.
Life continues while living with brain cancer
Today, three years later, Marcus continues to take the trial drug and the extract with no signs of tumor regrowth. The physical and occupational therapy he received after brain surgery helped get Marcus back on the course and running Ironman races.
Although Alishia still struggles with worry, she’s not surprised that her son is back to his old self. He has a great outlook on life.
“Marcus has always been the kind of person to bounce right back,” she says. “If a miracle is going to be there, I truly believe he is going to be the miracle.”
The success of the early-phase trial that Marcus participated in prompted investigators at the Ivy Center to advance the trial to a Phase 3 study. The Gliofocus Study, a global, randomized, controlled clinical trial, will compare niraparib to the standard chemotherapy, temozolomide. If successful, this study could change the traditional therapy for patients with aggressive brain tumors, including glioblastoma, and provide another potentially more effective treatment option. The trial will enroll 450 participants at more than 100 clinical sites across 11 countries worldwide.
- https://www.thebraintumourcharity.org/brain-tumour-diagnosis-treatment/types-of-brain-tumour-adult/astrocytoma/astrocytoma-prognosis/
- https://www.abta.org/about-brain-tumors/brain-tumor-education/
This story is for general health information only and is not meant to be used as medical advice, diagnosis or treatment. Please consult your physician or healthcare provider before beginning any treatment protocol or with any questions. This story reflects the health status of this particular patient at the time the story was written and photographs were taken. The patient’s condition may have changed over time.