Tragic and Preventable MBC Loss

I write this with a heavy heart to share my mom's story and raise urgent concerns about the standard of cancer care in our country. By telling her experience, I hope to prevent more unnecessary deaths from avoidable medical oversights.

A life taken too soon

My mom, Maura Roby, passed away on June 5, 2024, while undergoing treatment for breast cancer. She had just started her first round of capecitabine (Xeloda), Herceptin, and Tucatinib—without ever being tested for dihydropyrimidine dehydrogenase (DPD) deficiency. In just the second week of her first cycle, she was hospitalized with severe diarrhea, neutropenia, and cognitive decline. Her condition rapidly deteriorated, and within six days, she was gone.

Unseen danger

Her scans showed no disease progression from the week before she began treatment to the week of her death. As I watched helplessly, desperate for answers, I discovered that severe and potentially fatal toxicity can occur in patients with DPD deficiency—something explicitly noted in the prescribing information for capecitabine (Xeloda).

The test that might have saved her

After her unexplained death, I had a DPYD gene sequencing test performed on my mom. The results confirmed she was DPD deficient—meaning she couldn’t properly metabolize the very drug meant to help her. Instead, it led to her rapid decline and death. Through my research, I learned that cancer patients in the U.S. are not routinely tested for this genetic deficiency before treatment. Many, like us, aren’t even informed of the risk. Meanwhile, multiple European countries and some Canadian provinces require DPD deficiency testing before starting capecitabine or 5-FU chemotherapy.

My mom and our family were never given that knowledge or choice. Because of this, she died needlessly. I miss her deeply, and I refuse to let her story be forgotten.

Time to act

We must take action. Routine DPD deficiency testing should be a standard part of care for breast cancer patients in the U.S. If you or a loved one is facing treatment with capecitabine (Xeloda), please demand a DPD test first. No one else should have to suffer this preventable tragedy.

Thank you for reading. Sending love and strength.

Katie Roby, Maura Roby’s daughter