Frank’s Story: “I had to place many of my normal life activities on hold.”

What started as a routine treatment plan soon became a journey filled with challenges, tough decisions, and unexpected turns for Frank Garred. Along the way, he faced side effects that disrupted daily life, the uncertainty of recurrence, and the hope offered through innovative research. Today, his story has come full circle in ways he never imagined—and it’s one he’s proud to share in hopes of helping others on the same path. This is his story:

I began treatment for Stage 0 carcinoma in situ in early December 2017. My first round of BCG infusions was once a week for five weeks, followed by a cystoscopy and cytology testing. After three months of healing and recuperation, I went through two more BCG infusions with a scope and urine chemistry. Three months later, I repeated the same process. The examinations showed a good response, so my treatments shifted to every six months, with three weekly BCG infusions at each interval.

By mid-November 2021, during a check-up, there was an indication of recurrence. Urine chemistry and a biopsy confirmed it. After discussing alternatives with my doctors, I made the decision to pursue admission into the SunRise 1 Clinical Study. Thankfully, the results of the study led to the recent FDA approval of Inlexzo for non-muscle invasive bladder cancer treatment.

For me, the effects of BCG were at times very severe. For the first three to five days after each infusion, I experienced urgency, incontinence, bleeding, pain and fatigue that often cost me sleep. Medications helped somewhat, but weren’t enough to fully control the side effects. I had to place many of my normal life activities on hold and cancel family plans. During some treatment periods, I even had to rely on adult diapers to maintain any normalcy.

Once I entered the clinical trial, the treatment protocols were somewhat similar in structure to BCG but centered around the TAR-200 device. For the first six months, the device was inserted once every three weeks (with the old one removed and a new one inserted). Each visit also included extensive blood and urine chemistry testing, and CT scans at three and six months. My response was favorable—no visible or analytical evidence of recurrence. Because of that, the protocol shifted to insertions every three months. My last insertion and removal was in May 2023.

In early 2023, interim study results were released, showing my cohort had a complete response rate over 80 percent—an exciting and hopeful number. After my last treatment, the study moved me to exams every six months, still including all the chemistry and CT scans.

Compared to BCG, the TAR-200 side effects were far more manageable. I had some discomfort for a couple of days after insertion, but little to no urgency, pain, or incontinence. This meant far less disruption to my family and personal life, though participating in the study did require a lot of extra time—urine collection, lab appointments, and frequent study team check-ins. I assume that if TAR-200 is approved for wider use outside a research setting, that level of involvement won’t be necessary.

Throughout my journey, both my BCG medical team and the clinical research team were attentive, supportive, and deeply aware of how treatment affected me and my family.

What I didn’t know during those years was that support organizations like BCAN even existed. I didn’t learn about BCAN until I met their team at a conference in April 2025 in Dallas. They offer encouragement and support outside of the medical setting—something I wish I had known about earlier. Moving forward, I plan to support BCAN actively, especially in sharing awareness about Inlexzo, which has made such a difference in my life.

20 Years of Impact: 20 Voices of BCAN

For two decades, the Bladder Cancer Advocacy Network (BCAN) has been a beacon of hope, support, and advocacy for patients and their loved ones. As we celebrate 20 years of collective progress, we honor the voices that have shaped this journey—those who have faced bladder cancer with resilience, and those who have provided unwavering support.

Through our 20 Voices initiative, we are sharing powerful personal stories that highlight the impact of bladder cancer and the strength of our community. These voices reflect the challenges, triumphs, and hope that define BCAN’s mission for better todays and more tomorrows for all those impacted by bladder cancer.