I’m Curtis, and This is My Immunotherapy Story

I remember that day: hearing the doctor explain my clinical trial options which involved immunotherapy. I was fearful and full of questions. I remember thinking: what medication will the doctor be giving me? What will the side effects be? So many things ran through my head; it was an overwhelming experience for sure.

Identifying the right trial

I did worry about my future. The right clinical trial was identified using Pembrolizumab, an immunotherapy drug and a phase 1 research drug that inhibits the FGFR1 mutation. I remember the clinical research nurse coming in with a huge packet of information, which is the consent to participate in the clinical trial. The nurse had to read through each page of the consent to make sure that as a patient, I understood the trial, what to expect as I moved through the trial, and potential side effects. I was able to start the clinical trial in May 2017, making me the second person in the world to receive the study drug, Pembrolizumab. 

The first day of my immunotherapy infusion

The first day of immunotherapy treatment went smoothly and was a pretty quick infusion. It only takes approximately 30 minutes for the drug to infuse, and by the time you relax, the treatment is completed. Receiving immunotherapy treatment is a lot easier than chemotherapy. I remember my chemotherapy days would sometimes last six hours or longer, and by the time I left the clinic, I was drained. After starting the immunotherapy treatment, my tumors began to shrink, and by the end of my immunotherapy treatment, my doctor told me “there is no evidence of disease.” My entire medical team was amazed that in just four months on immunotherapy treatment with a combined FGFR1 inhibitor, no metastatic bladder cancer was showing up in my body. 

A future immune to bladder cancer

Immunotherapy has been more tolerable, allowing me to do things that chemotherapy would not. With immunotherapy, I was not nauseous or feeling depleted of all my energy. I have an appetite and enjoy eating food. It’s also a good feeling knowing my body is not being pumped full of toxins, but rather a therapy to boost my immune system to fight off the cancer cells. The best advice I could give to someone looking for immunotherapy treatment or a clinical trial is to advocate for yourself. Talk to your doctor, do research online about where bladder cancer clinical trials are being done, and seek out a second opinion from a leading cancer institute. There are more and more bladder cancer breakthroughs being made, and it gives me hope that one day we will see a future immune to bladder cancer.

Editor’s Note: With heavy hearts, we regret to inform readers that on February 27, 2021, Curtis passed away from stage IV bladder cancer. Curtis’s advocacy efforts and writing continue to impact many. He will be deeply missed.