Unlocking Lonnie Van Horn’s Genetic Blueprint: The Crucial Role of Genes in His Prostate Cancer Journey

Lonnie Van Horn has been waging a seven-year battle against metastatic prostate cancer. His journey is one of determination and hope and shines a spotlight on the importance of understanding the role genes play when seeking the most effective treatment path. 

The Shocking Diagnosis

In 2017 at the age of 47 Lonnie received a devastating diagnosis: stage 4 prostate cancer. What made it even more shocking was that he had no known family history of the disease. Lonnie’s cancer was aggressive. His Gleason Score was 9, and his PSA level soared to 685. The odds were stacked against him.

Lonnie’s oncologist delivered a grim prognosis: without treatment, Lonnie wouldn’t survive the year. Despite his adamant refusal of chemotherapy, Lonnie agreed to an androgen deprivation treatment (ADT) regimen that included Lupron. For eight months, Lonnie clung to hope, relying on Lupron to keep the cancer at bay.

The Battle Continues

But cancer can be relentless. The ADT drug therapy eventually stopped working, and Lonnie became castrate resistant. Undeterred, he embarked on a quest for a new lifeline—a clinical trial that could offer hope.

Unraveling the Genetic Clues

Lonnie’s oncologist ordered DNA testing, hoping to uncover genetic clues that could lead to a personalized course of therapy. The results revealed two significant mutations: BRCA2 and CHEK2. Each of these mutations increases a man’s risk of prostate cancer. Armed with this knowledge, Lonnie and his medical team set out to find a clinical trial tailored to his unique genetic profile.

Lonnie was immediately enrolled in a trial that combined a drug cocktail of Lynparza, Lupron, Prednisone, and Abiraterone. The goal? To slow down disease progression. After three years, the therapy hit a roadblock and Lonnie’s PSA began to rise. Faced with three options—chemotherapy, immunotherapy, or persisting with a treatment that wasn’t working, Lonnie made a bold decision.

Taking a “Treatment Vacation”

Against his oncologist’s advice, Lonnie opted for a treatment “vacation.” He needed to give his body and mind a respite from the relentless battle. Currently, he’s closely monitored through labs and PET scans, preparing to re-enter the fight this summer.

Lonnie and his physician are now looking for new clinical trials designed for men like Lonnie with similar gene mutations. The goal is to bide time until new treatment therapies are discovered. Despite the challenges, Lonnie and his oncologist remain positive, knowing that Lonnie’s relative youth and overall strength work in his favor.

Paying it Forward: the PROMISE Registry

Lonnie’s keen interest in genetics and his recognition of its pivotal role in cancer treatment motivated him to join the PROMISE Registry in 2024. PROMISE is a nationwide observational study of prostate cancer patients with inherited gene mutations. The purpose of the PROMISE registry is to learn more about the role genes play in improving treatments and outcomes for prostate cancer patients.

Lonnie believes awareness of his BRCA2 and CHEK2 gene mutations has significantly extended his life, and he eagerly awaits novel treatment breakthroughs and protocols that may be derived from PROMISE Registry data.

Lonnie’s unwavering conviction is evident. He emphatically states, “Whether you’ve been tested before or not, participating in PROMISE is crucial. Knowledge is power. Being part of PROMISE can’t harm you—it might just save countless lives, including your own.”

Lonnie’s story is about the determined pursuit of better treatments. Please consider joining Lonnie and becoming part of the PROMISE Registry. Help us rewrite the narrative of prostate cancer. Visit www.prostatecancerPROMISE.org to learn more.