An Immunotherapy Clinical Trial as My First-line Treatment

If you are familiar with my cancer story, you know that it has been ANYTHING but typical. From my age, stage of diagnosis, recovery story, even my treatment plan. Nothing has gone quite the way it should.

Having bladder removal surgery within 3 weeks of my diagnosis

When I was diagnosed, we knew that surgery had to come first. There was no time to try any type of chemotherapy or radiation as my tumor was threatening my life and my quality of life was severely impacted. So within 3 weeks, my bladder was out and I had an ostomy! My team sent me home to recover with the plan to start a course of radiation, followed by chemotherapy in six weeks.

My original treatment plan did not happen

Well, that didn’t happen. There was a round of sepsis, an out of control white cell count (found at my radiation consultation), and everything culminated in me waking up on a late September morning in the worst pain of my life. We rushed to the ER and after blood work and scans, we found my white count was still incredibly high. Even more concerning were several lymph nodes in my pelvic region that were quite enlarged. The largest was crushing my sciatic nerve, causing my pain. My oncologist had a very frank chat with us that I was not well enough to try radiation or chemotherapy at this time, instead I would be starting immunotherapy.

Genetic testing showed that immunotherapy might work for me

We were very lucky that I had genetic testing done early on as part of my case study. The results showed I had the PDL-1 expression in my cancer. This meant I would hopefully react favorably to immunotherapy. However, immunotherapy at the time was a last resort treatment for bladder cancer. A patient needed to have tried radiation, chemotherapy, and surgery all without improvement before being approved for immunotherapy.

Understanding why I was starting immunotherapy

As a patient being told I would start immunotherapy, I thought this meant I was so sick and too far gone to be helped with other treatments. It was very discouraging to be told I would be starting with what should be a last resort. My oncologist and team explained that this wasn’t the case at all. After an hour of explaining PDL-1, how immunotherapy works, and that I was being put on a clinical trial of immunotherapy as a first line of treatment, I understood this was my best chance at fighting bladder cancer.

My experience with Keytruda

I checked out of the hospital on October 2nd, and on October 4th I had my very first infusion of Keytruda. A year later, I am still receiving my 200mg of Keytruda every 3 weeks with much success. My blood work is now completely normal, my problem lymph nodes have all shrunk, and we are down to just 3 that we are monitoring. I am very lucky that Keytruda has not caused any side effects that greatly impact my daily life.

My unconventional treatment journey

People are often fascinated that I have only had surgery and immunotherapy for my cancer. Even more folks have no idea what immunotherapy is. I have more than once needed to explain that I don’t get vitamin infusions to boost my immune system; instead, I am putting glasses on my T cells so they can “see” the cancer and attack it.

A clinical trial was my only option

There is also a misconception that I have had the “easy way out” by not needing to do radiation or chemotherapy so far. Being on a clinical trial as a first resort is no cakewalk. There is so much unknown and things could go wrong at any time. I always keep in the back of my mind that one wrong scan means I have to completely change my treatment protocol and we are at square one again. Even today as I type this, I am waiting on scan results, crossing my fingers, and hoping everything is still going well.