www.know_the_risk_of_5fu_chemotherapy.com

In January 2023 Larry had a pT3N2a Colon Cancer removed at the MA General Hospital (MGH) and was referred to MGH oncology to consider adjuvant treatment. A radio broadcast consultant and father of three young adults, Larry and his wife, Kerin lived a full, active, and happy life together on Cape Cod.

Over the course of three months, Larry and his oncology team weighed the pros and cons of adjuvant chemotherapy. While he recognized that treatment would decrease his chance of recurrence, a PET scan and Guardant Reveal blood testing did not detect the presence of cancer and concern over the side effects of chemotherapy weighed heavily upon him.  The risk of a DPYD deficiency was never discussed, nor contemplated as part of making a treatment decision. Larry’s children did not support treatment, and his wife indicated she would support whatever decision he made. Ultimately Larry decided to begin a six-month course of capecitabine/oxiplaitin to have the best chance of preventing a recurrence, and in his words, leaving Kerin a widow.

On April 24, 2023, Larry’s chemotherapy began. Four days into treatment he started complaining of mouth sores that worsened progressively through the weekend. On May 1 Larry’s oncologist had him pause treatment and he was evaluated in the ambulatory clinic the next day, where a DPYD test was conducted. Larry was admitted to Mass General Hospital on May 3 in excruciating pain, bleeding, and with an inability to swallow. Four days later he was transferred to the ICU and intubated, where he remained until his death.

A day after being admitted to the ICU Kerin learned that Larry had a complete DPYD/DPD deficiency (Variant 2A Heterozygous, Activity Score: 0.0). His deficiency led to two intubations, severe mucositis, neutropenia, pancytopenia, MSSA pneumonia, E. Faecium, malnutrition, severe GI ulceration, persistent diarrhea, and indescribable heartache and tears in his ICU room. She learned too late that his suffering and untimely death from what the literature calls a 100-fold overdose could have been prevented by a simple pre-screening blood test. That simple blood test would have allowed Larry to have celebrated big life events such as his son and his daughter’s weddings, but all the little events he loved so much too; coffee at the harbor, football Sundays with his beloved NE Patriots, long beach walks, fresh shucked oysters, and an old fashion peppermint stick ice cream sundae.

In 2024 Kerin began collaborating with the advocacy group AUDT (Advocates for Universal DPD/DPYD Testing) with a goal to spread awareness and change the standard of care for patients in the United States. Her first priority and achievement was to convince the Mass General Brigham system to establish a comprehensive DPYD pre-screening program, successfully in place since January 2025 across their 10 acute care hospitals. Joining other AUDT families Kerin continues to advocate, in Larry’s memory, for broad changes to the standards so no other individual nor family suffers needlessly due to a lack of DPYD testing before cancer treatment.