How I’m Navigating Life After a Brain Cancer Diagnosis

My journey with brain cancer began suddenly in the middle of the night. My wife, Krystal, woke up to me having a grand mal seizure in bed. Before I knew it, paramedics were transporting me to the hospital. I had no idea I’d had a seizure—I’d felt perfectly fine earlier that day.

To investigate the seizure, doctors ordered a CT scan of my brain. After what felt like an eternity, several doctors entered my room. One of them, a neurologist, said: “You have a mass on your brain.” A biopsy confirmed a brain cancer diagnosis.

At first, it was hard to grasp that I had brain cancer. I had no symptoms—no headaches, no dizziness. If not for the seizure, I might have never known something was wrong. Even months later, when I was diagnosed with grade 2 oligodendroglioma, it still didn’t feel real.

Facing Surgery

My oncologist recommended tumor resection surgery to remove as much of the tumor as possible. The surgery was a success, but the tumor’s location—near the part of my brain controlling movement and speech—made recovery challenging.

After the surgery, I experienced slurred speech and occasional stuttering. Thankfully, these effects faded with time. However, the numbness in my right hand and fingers, though improved, still impacts my daily life.

Exploring Treatment Options

Following the surgery, my oncologist and I discussed the next steps. The surgery had gone well, but I still had brain cancer. I had three options:

Watch and wait.
Start radiation and chemotherapy.
Join a clinical trial.

After discussing all options, we decided I would move forward with the clinical trial.

My oncologist explained it was for a new once-a-day pill called Vorangio^® (vorasidenib) being investigated for the treatment of Grade 2 astrocytoma or oligodendroglioma with a susceptible IDH1 or IDH2 mutation following surgery including biopsy, subtotal resection, or gross total resection.

See below for additional Important Safety Information and risks of Voranigo^® (vorasidenib). Click here for Prescribing Information and discuss with your doctor.

Because I had the IDH mutation, I was a potential candidate for the clinical trial. However, my tumor needed to remain stable for one year before I could enroll. The trial would be double-blinded, meaning neither my oncologist nor I would know if I was receiving the medication or a placebo.

For me, it was worth the chance.

Joining the Trial

Thankfully, my tumor didn’t grow, and I was able to join the trial. Initially, I didn’t know whether I was taking the medication or a placebo. My oncologist outlined the possible side effects of Voranigo, including liver problems, fatigue, headaches, and nausea.

I continued my regular MRIs and one day, my oncologist walked into the room with exciting news. She confirmed that I was on Voranigo, and it was working—my tumor had started to shrink.^◊

Voranigo, which received U.S. Food and Drug Administration (FDA) approval in the U.S. on August 6, 2024, is an isocitrate dehydrogenase1 (IDH1) and isocitrate dehydrogenase 2 (IDH2) inhibitor, indicated for the treatment of adult and pediatric patients 12 years and older with Grade 2 astrocytoma or oligodendroglioma with a susceptible IDH1 or IDH2 mutation following surgery including biopsy, subtotal resection, or gross total resection.

The approval of Voranigo is supported by results from the pivotal Phase 3 INDIGO clinical trial published in The New England Journal of Medicine and presented at the 2023 ASCO plenary, which showed that Voranigo significantly extended progression free survival and time-to-next intervention, when compared to placebo.

Living with Brain Cancer

I see my oncologist every two to three months for blood work and check-ins.

While the numbness in my right hand makes some tasks harder, I’ve adjusted. I used to work at Harley-Davidson, where I met Krystal, and although I can’t work on motorcycles like I used to, I still take on smaller projects. I manage the house and help with the kids while Krystal works full-time.

Finding Strength in Each Day

Brain cancer has taught me to take life one day at a time. My wife has been my rock, keeping me positive and helping me recognize my own strength. I may not be able to do everything I once could, but I’m here for my family, and that’s what matters most.

To others navigating life with brain cancer: know that even in the most challenging moments, hope and strength are possible. Treatments like Voranigo can make a difference, and the support of loved ones is invaluable.

For more information about Voranigo, please visit www.Voranigo.com.

^◊VORANIGO was shown to increase the length of time a patient can live with Grade 2 IDH-mutant astrocytoma or oligodendroglioma without tumor growth

*Brian is a paid consultant for Servier in the U.S. Last name withheld to protect personal privacy.

What is VORANIGO?

VORANIGO (40 mg tablets) is a prescription medicine used to treat adults and children 12 years of age and older with certain types of brain tumors called astrocytoma or oligodendroglioma with an isocitrate dehydrogenase1 (IDH1) or isocitrate dehydrogenase2 (IDH2) mutation, following surgery. Your healthcare provider will perform a test to make sure that VORANIGO is right for you. It is not known if VORANIGO is safe and effective in children under 12 years of age.

What are the possible side effects of VORANIGO?

VORANIGO may cause serious side effects, including:

Liver problems. Changes in liver function blood tests may happen during treatment with VORANIGO and can be serious. Your healthcare provider will do blood tests to check your liver function before and during treatment with VORANIGO. Tell your healthcare provider right away if you develop any of the following signs and symptoms of liver problems:
- yellowing of your skin or the white part of your eyes (jaundice)
- dark tea-colored urine
- loss of appetite
- pain on the upper right side of your stomach area
- feeling very tired or weak

The most common side effects of VORANIGO include:

increased liver enzyme levels in the blood
lack of energy, tiredness
headache
COVID19
muscle aches or stiffness
diarrhea
nausea
seizure

Your healthcare provider may change your dose, temporarily stop, or permanently stop treatment with VORANIGO if you have certain side effects.

VORANIGO may affect fertility in females and males, which may affect the ability to have children. Talk to your healthcare provider if this is a concern for you.

These are not all of the possible side effects of VORANIGO.

Before taking VORANIGO, tell your healthcare provider about all of your medical conditions, including if you:

- have liver problems
- have kidney problems or are on dialysis
- smoke tobacco
- are pregnant or plan to become pregnant. VORANIGO can harm your unborn baby

Females who are able to become pregnant:

Your healthcare provider will do a pregnancy test before you start treatment with VORANIGO
You should use effective nonhormonal birth control during treatment with VORANIGO and for 3 months after the last dose. VORANIGO may affect how hormonal contraceptives (birth control) work and cause them to not work well. Talk to your healthcare provider about birth control methods that may be right for you during treatment with VORANIGO
Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with VORANIGO

Males with female partners who are able to become pregnant:

You should use effective birth control during treatment with VORANIGO and for 3 months after the last dose
Tell your healthcare provider right away if your partner becomes pregnant or thinks she may be pregnant during your treatment with VORANIGO

Tell your healthcare provider if you are breastfeeding or plan to breastfeed. It is not known if VORANIGO passes into breast milk. Do not breastfeed during treatment with VORANIGO and for 2 months after the last dose.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. VORANIGO may affect the way other medicines work, and other medicines may affect how VORANIGO works.

Please see Full Prescribing Information.

US-03470v1.0 02/25