The best feedback, of course, is from the most fortunate of our cancer patients who thank us and tell us that their lives were saved. And if not saved, then families and caregivers report that life extension took place and a higher quality of life was achieved. And for those patients who experienced disease progression while participating in a clinical trial, the feedback is invariably that they still believed that their enrollment in the clinical trial, based on the array of several options that they had considered with their oncology team, was, in retrospect, the best option for them.
One of our Stage IV patients, who was the subject of a Newsweek profile in 2011, has enjoyed six more years of complete remission because of a clinical trial of a breast cancer vaccine (bringing her total remission to ten years and counting).
Another patient, who was years ago battling a metastatic GI cancer, had been “written off” early on by her first oncology team in a major center and was told there was absolutely no hope for her. She has had no recurrence of the GI cancer after more than 10 years after receiving a drug that had not been broached as even in the realm of potential therapeutic options for her. Clinical trials had never been discussed with this patient until she sought out ICAN’s advocacy services. Another patient, battling melanoma, was similarly told how dire things were by her oncology team, and more than five years ago had the good fortune to enter a Phase I trial of a novel immunotherapy drug which ultimately was approved by the FDA. She just celebrated yet another set of scans showing the coveted “NED” status meaning “no evidence of disease.”
Virtually every patient, family member and caregiver we have dealt with says the same thing: that the peace of mind achieved after having entered a clinical trial underscores that their cancer journey has left no stone unturned in their battles for life. Of course, favorable patient outcomes are not at all certain, and not all patients receive a benefit by any means. We all know how few compounds actually receive FDA approval. Even though patients, when fully informed about a potential clinical trial understand that they may not achieve tumor regression once enrolled, they still want to help the research process benefit future patients. We educate our patients that it is important to remember that the main goal of clinical research is to create new knowledge.
