Arkansans Who Fight

Every cancer battle is as unique as the person fighting it.  Patients share their stories with us.

Jeremy Hinton Little Rock

In April 2014, I was diagnosed with glioblastoma multiforme. I had been playing a video game when I noticed my left hand not working correctly and thought I was having a stroke. While in the emergency room, I had a seizure and after MRI, my surgeon decided to resect the 2.5 cm tumor in my left parietal/occipital junction in order to properly diagnose it. Pathology confirmed the diagnosis of GBM, but since my post-operative surgery revealed some residual enhancement, I had a second resection shortly after.

When I got home, I started 33 targeted brain radiation treatments with concurrent dosage of Temodar, an oral chemotherapy agent. After finishing the radiation, I continued on the Temodar, taking it once monthy for five days in a row. Everything went smoothly (aside from the occasional seizure) until Dec 2016, when I began having seizures more frequently.  We discovered a small recurrence and resected the tumor on Feb 1, 2017.  I've been tumor free for 6 months now, and I continue to take Temodar 5 days out of every month to treat the tumor bed and prevent recurrence, and will for the next 6 months.

My advice for y'all who are diagnosed with GBM: get the standard treatment (resection if possible, followed by radiation and chemotherapy). This standard regimen gives you the best chance for survival. Get a second opinion at a brain tumor center. We do not have one in Arkansas, so I chose Duke, as I had seen their research using polio virus to treat GBM. The standard treatment has not changed in decades, but new research is being completed every month. After standard treatment I recommend trying to find a study that you'd qualify for. Since I had a resectable tumor and I had responded to chemo before, my team and I decided to go through with the original treatment plan, holding off on a study until the standard treatment fails.

James Matthews Little Rock

(James's wife Jill speaking on his behalf) 

Glioblastoma is not a word I was familiar with. I assumed it couldn't be good. I knew it was a cancerous tumor and it was in the brain of someone I deeply loved.

My husband, James, was diagnosed in February of 2014 just about 15 months after we married. James underwent brain surgery to remove the tumor, and pathology came back GRADE 4 GLIOBLASTOMA. We educated ourselves, asked a lot of questions and entered clinical trials. James lost his courageous battle just 21 months after being diagnosed. It was very difficult to watch my strong and brilliant husband slowly become totally dependent on me.

If I may offer any advice it would be...... Only you will truly care about this diagnosis and the outcome for yourself or loved one. ADVOCATE for yourself. Ask many questions and then ask more. Get a second opinion. Do not stand on the sidelines waiting for direction. Take control. Look for options beyond the standard of care. Ask for help. This is the brain we are dealing with and that is what makes each and every one of us who we are.