When Rachel Lefebvre agreed in September to speak with me for a story about her quest to find a clinical trial to treat her stage 4 colon cancer, she had one stipulation: There could be no mention of her prognosis, lest her sons, Pierro, 12, and Sebastien, 10, discover how precarious her situation was.
Her cancer had “come back with a vengeance,” she said. She was losing energy and her liver was starting to function poorly as a result of her tumors and treatments.
When STAT published her story in early October, Lefebvre had two final options. Plan A was in Denver, where researchers were about to test a combination of immunotherapy drugs — the new and promising class of cancer therapies that turn the body’s immune system against tumors. If she could not clear the waiting list for the Denver trial, she hoped to secure the drugs on her own and follow Denver’s protocol at home.
Unlike many other patients, Lefebvre had a Ph.D. and an ability to navigate the Byzantine world of medical journals. She also had an oncologist with deep expertise in experimental treatments. But even then, Lefebvre struggled to find good options among the roughly 52,000 trials listed on the government’s website ClinicalTrials.gov, because the system is often designed with research, not patients, in mind.
Further complicating matters, many immunotherapy researchers want only those patients who’ve not yet tried the new drugs, leaving people like Lefebvre to face the decision of a lifetime — namely, which single potentially life-saving therapy to bet on.
She’d done everything by the book. She had begun exploring trials soon after being diagnosed in 2013. She’d switched oncologists to find one who was willing to consider experimental treatments. She was still healthy enough to qualify for a spot in a trial, and she’d found a promising option.
Yet she knew she still faced long odds.
After her story was published along with a video of her and her family, Lefebvre wrote in an email: “I know my kids don’t get how hard things have been for me and how hard I have been ‘fighting’ with all I have. I want them to know in the end that I have fought tooth and nail for them, that my fight has been a testament of my love for them. … They will have this video to remind them and that means a lot to me.”
Her wider legacy would be for strangers — those with cancer who, upon reading her story, might better understand what they face if they exhaust conventional medical options. One cancer researcher thanked her personally: “It is a gift you have given many others to know that this problem is pervasive,” he wrote.
Lefebvre’s story also circulated among leaders of the research and funding community. Work was underway to improve ClinicalTrials.gov, and according to one person involved in that effort, Lefebvre’s story helped accelerate it.
Should ClinicalTrials.gov be made more helpful to patients, it will, alas, serve a generation of people who will never know the woman who helped spur at least some of that change.
In the weeks following the publication of Lefebvre’s story, both her body and the cancer trial system conspired against her. Researchers unexpectedly shut down the trial she had hoped to join in Denver, her doctors grew uncomfortable with helping her try an untested drug combination at home, and no other good experimental options emerged.
In her final blog post last month, she wrote that she was seeking palliative care. She died early this month. She was 43. She leaves behind her husband, Fred, their sons, and a legion of cancer survivors who may face better odds as a result of the battle she waged.