A Journey of Resilience, Clinical Trials, and Lifelong Advocacy

Lonnie V. of Indianapolis discovered he had stage IV prostate cancer in September 2017 at age 47. His initial symptoms included persistent urination issues, general body pain, and severe lower body pain that was initially misdiagnosed as a urinary tract infection and then prostatitis. When antibiotics provided no relief, his doctor conducted a physical exam and found an irregular prostate. A subsequent biopsy and a PSA level of 685 (normal is below 4) confirmed advanced prostate cancer.

The emotional toll hit Lonnie hard. Shock, sadness, and fear overwhelmed him as he considered end-of-life arrangements. Though his oncologist suggested immediate chemotherapy, Lonnie chose a different path. He began with a testosterone-blocking medication, adopting a healthier diet and eliminating alcohol to support treatment. After eight months of success, the cancer became castrate-resistant, rendering the medication ineffective.

Faced with new treatment decisions, Lonnie joined a clinical trial while continuing the testosterone blocker. Despite challenging side effects, the trial stabilized his cancer and PSA levels for over three years. As its effectiveness waned, he coped with rising anxiety through therapy. In January 2023, he left the trial due to diminished results, but soon continued the same drugs off-trial once they gained FDA approval. While they helped briefly, Lonnie felt mentally and physically drained after six years of continuous therapy, leading him to take a treatment break in October 2023. During this pause, his PSA unexpectedly dropped, but a recent PET scan showed new disease activity, prompting a return to the trial medications.

Throughout this ordeal, Lonnie remains driven by a love for life and a passion for advocacy. Harnessing social media, he encourages proactive cancer screenings and fosters patient empowerment. Although he faces ongoing challenges, he emphasizes the importance of patience, mental health support, and meticulous decision-making. His message to newly diagnosed patients is clear: take the time to learn about your condition, speak up for yourself, and always consider the mental and emotional aspects of the journey.