Gary Price: Living the Best Life Possible with Metastatic Bladder Cancer

Almost three years after I was first diagnosed with bladder cancer, I learned that it had metastasized. Aggressive chemotherapy did not stop the cancer, and I was told I had just months to live. But then I took part in a clinical trial testing a new medicine, erdafitinib (Balversa). Erdafitinib has stopped the tumor from growing for three years now, and although I have some serious side effects from the medicine, I am making the best of my life.

It all started in the summer of 2013, when I noticed some blood in my urine. The first time it happened was startling, but I didn’t worry too much. Then it happened again and again, so I went to my primary care physician who recommended a series of tests. An ultrasound showed that my right kidney was extremely enlarged, which led to an MRI that showed a mass in my bladder. Finally, my local urologist did a cystoscopy, and I was told that I had bladder cancer.

It was very traumatic to hear the words, “you have cancer.” I immediately wondered if it was a death sentence, but the urologist reassured me that the cancer had not spread out of the bladder and that they could treat it.

Days after the diagnosis, I had surgery to remove the tumor. It was as big as a billiard ball and blocking the tube from my right kidney to my bladder, which is why the kidney was so enlarged.

After the surgery, I had several treatments with BCG, but they did not keep me free of cancer. Over the next year or so, I had surgery five or six times to remove papillary-type tumors that kept growing in my bladder. My oncologist told me that these were not as aggressive as the first tumor that was removed but he recommended that I transfer my treatment to The University of Texas MD Anderson Cancer Center.

The medical team there recommended more extensive surgery, and in June 2015 I had a 15-hour surgery to remove my bladder, my right kidney, which had been so badly damaged that it was no longer functioning, my right ureter [the tube connecting the kidney and bladder], and my prostate.

The surgery was life changing. For example, I have an ostomy bag that I deal with every day, but it was something that I had to do to give myself the best chance of beating the cancer.

I was cancer free for just under a year. In April 2016, my routine follow-up scans showed a nodule in a scar that I had from where a drain from my kidney had been placed. A biopsy showed that it was the bladder cancer. I had metastatic disease.

I spent three days in the hospital receiving a very aggressive chemotherapy treatment, but that didn’t stop the tumor from growing. I needed something different.

The oncologist checked a sample of my tumor and told me it had an alteration in a certain receptor, the FGFR3 receptor. She also said that she was involved in a clinical trial testing a new medicine for people with cancer who have alteration in this receptor. I felt that it was my best choice and I have been taking erdafitinib ever since.

I am not cancer free, but the erdafitinib has controlled the growth of the tumor. It remains the size of a pea.

The erdafitinib does not make me sick like standard chemotherapy does for many people, but I have had to learn to live with some serious side effects. I have hand-foot syndrome, which means my hands and feet hurt severely all the time and it is hard to use my hands, so I can’t open pop tops on cans or play the guitar anymore. I also can’t taste salt and the nails on my fingers and toes lift off.

I don’t dwell on the negatives; I continue to live my life as well as I can. I go to work every day, my wife and I started a new business, and I schedule competing in clay pigeon shooting tournaments months in advance.

Before my diagnosis, I had barely even heard of bladder cancer, but it is the sixth most common cancer diagnosed in the United States. I hope that by sharing my experience I can increase awareness about bladder cancer and the need for research funding.