‘You’re Not Alone’: Lynton Daniel’s 14-Year Journey With Brain Cancer and the Promise of Precision Medicine

 

Daniel’s treatment path took a pivotal turn when he started taking Vorasidenib, a drug approved by the Food and Drug Administration (FDA) designed to target gliomas with specific genetic mutations in the IDH1 and IDH2 genes. These mutations alter how cells process energy and contribute to tumor growth. Vorasidenib works by inhibiting the mutated enzymes, slowing tumor progression, and potentially delaying the need for more aggressive treatments like chemotherapy and radiation.

“These are very powerful drugs,” Dr. David Peereboom, a medical oncologist specializing in brain tumors at the Cleveland Clinic in Cleveland, Ohio, tells SurvivorNet.

“Vorasidenib is completely different in terms of the relative level of side effects between my previous drug, or any of the other drugs that many of us with brain cancer are on,” Dr. Peereboom added.

WATCH: A Breakthrough in Glioma Treatment: Vorasidenib

Unlike traditional therapies that often come with harsh side effects, Vorasidenib offers a more targeted approach. It’s taken orally, making it a more convenient and less invasive option for patients.

“I would’ve thought there would be some ramifications of taking this drug because I’m older,” Daniel says, “but I don’t think that’s true for me.”

Now on his 92nd cycle—more than 2,700 doses—Daniel has maintained a consistent routine, taking his medication at noon every day.

“I’ve been doing exactly the same thing now for over seven years,” he says, a testament to both the drug’s tolerability and his unwavering discipline.

Faith, Friendship, and Emotional Strength

Living with a brain cancer diagnosis for over a decade hasn’t been easy.

“How many times I have been told that I was going to die is very worrying,” Daniel shares. But he credits his emotional well-being to three pillars: enduring friendships, strong faith, and a sense of purpose.

A study published in Cancer highlights the powerful role of faith in the lives of cancer patients, revealing that 69% of those diagnosed with cancer reported praying for their health, compared to 45% of the general U.S. population.

Cancer psychologist Dr. Andrew Kneier helped co-author “Coping with Cancer: Ten Steps toward Emotional Well-Being.” He also co-authored a column published by Stanford Medicine with Rabbi Jeffery M. Silberman, director of spiritual care at Danbury Hospital in Connecticut.

Together, they emphasize the deep emotional and psychological support that faith provides to those battling illness.

According to Kneier and Silberman, spirituality offers a powerful coping mechanism, helping individuals navigate the uncertainty that comes with a cancer diagnosis.

“A person’s faith or spirituality provides a means for coping with illness and reaching a deeper kind of inner healing,” they explain.

WATCH: Faith Perspective: Opening Yourself Up to Others After a Cancer Diagnosis

“I have three BFFs from college days, 45 plus years ago. They are an absolutely critical part of my emotional well-being,” Daniel says. “I have a very strong faith. I can tell you that for me it’s just part of the root of how I’m able to go on.”

A Message to Fellow Glioma Patients

Daniel’s experience has shaped not only his outlook but also his desire to support others. “You’re not alone,” he says to newly diagnosed glioma patients. “It can be scary to reach out, especially when you’re vulnerable and newly diagnosed, but there are many people like me ready to help you, to be your friend.”

Daniel’s optimism is grounded in action. “Over time, I realized I could do more than just celebrate waking up every day. I could create something positive, help others, and contribute meaningfully to the community of patients. That’s where my sense of optimism comes from—finding purpose in connection and service.”

Daniel’s extraordinary journey with brain cancer is a testament to the power of resilience, the promise of modern medicine, and the unwavering desire to not just maintain a sense of optimism but share it with others walking a similar path.

How Vorasidenib Is Making a Difference

Dr. Alexandra Miller, Director of the Neuro-Oncology Division at NYU Langone Health, tells SurvivorNet that Vorasidenib is a “huge breakthrough for people with IDH mutant tumors.”

WATCH: FDA Approved Vorasidenib for IDH Mutant Gliomas

This drug was tested in a randomized clinical trial and showed impressive results. On average, it delayed the progression of IDH-mutant gliomas by over 27 months, compared with just 11 months for patients who did not receive the drug. The trial results were so promising that the Food and Drug Administration (FDA) approved Vorasidenib for use in grade 2 IDH mutant tumors.

Vorasidenib may also have long-lasting effects on patients. Researchers found that 87% of patients taking Vorasidenib did not need additional cancer treatment after two years, compared to only 27% of patients who did not take the drug.

Some common side effects associated with Vorasidenib include:

• Fatigue
• Headache
• Diarrhea.

Some may develop elevated liver enzymes on labs, which could indicate liver damage.

The INDIGO Trial demonstrated several important benefits for patients taking vorasidenib, including:

• Longer progression-free survival: The drug significantly extended the time before the tumor began to grow again.
• Delay in the need for radiation or chemotherapy: Many patients who took vorasidenib were able to postpone invasive treatments, reducing the risk of long-term side effects.
• Oral medication: Unlike chemotherapy, which often requires IV administration, vorasidenib is a pill taken by mouth, making it more convenient for patients.
• Targeted approach: The drug specifically attacks the molecular mechanisms driving the tumor, minimizing damage to healthy brain tissue.

“We have progression-free survival data from that trial. We don’t have life expectancy data from that trial, and we’re not going to get real life expectancy data from that trial because patients getting a placebo were allowed to cross over at progression. So in the end, every patient got vorasidenib if they wanted it at some point in the time of the study,” Dr. D. Ryan Ormond, a neurosurgeon at the University of Colorado in Denver, tells SurvivorNet.

WATCH: Finding Hope & Meaning: Living Fully with a Glioma Diagnosis

While Vorasidenib represents an exciting advance in the treatment of low-grade glioma, there are still several unanswered questions, including:

• Does vorasidenib improve overall survival? Since patients in the INDIGO trial were allowed to switch to vorasidenib upon tumor progression, researchers cannot definitively say whether the drug increases life expectancy.
• What are the long-term effects of taking vorasidenib? Since this is a relatively new drug, its long-term impact on brain function and overall health is still being studied.
• How does vorasidenib compare to other emerging treatments? Researchers continue to explore other targeted therapies, immunotherapies, and combination treatments to determine the best approach for managing low-grade gliomas.

If you or a loved one has been diagnosed with a low-grade glioma, discussing genetic testing for IDH mutations with your doctor is an essential step. If your tumor carries one of these mutations, vorasidenib could be a potential treatment option.

Questions to Ask Your Doctor

Whether you’re living with glioma or caring for someone who is, it’s natural to want clearer guidance and more meaningful conversations with your care team. To help, our glioma experts have developed key questions designed to spark dialogue, deepen understanding, and empower you on your journey.

• Can you connect me with local support for patients living with glioma?
• What sort of side effects should I expect after treatment?
• Will I be able to work during or after getting treatment?
• Where can I turn if I am struggling to pay for treatment?

Learn more about SurvivorNet's rigorous medical review process.

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