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Clinical trial patients…are never forgotten.

BCAN asked Dr. Andrea Apolo, Chief of the Bladder Cancer Section of the Genitourinary Malignancies Branch of the National Cancer Institute, what researchers learn from bladder cancer patients who do not survive in a clinical trial. This is what she shared with us:

Mr. Z. was enthusiastic about participating in the clinical trial. In fact, we had several patients from Texas enrolling around the same time. Although he had advanced metastatic disease and was experiencing pain, we hoped he would benefit from our treatment, since he was otherwise healthy and had a strong support system and a positive outlook.
Mr. Z. had a very aggressive cancer that did not respond to treatment. Other patients who were not as healthy did respond and are still in the trial. We don’t know why some patients on the trial do not respond. It could be the genetic makeup of the tumor, such as its DNA and RNA, or the presence of certain proteins on the surface of the tumor. We hope for a 100% response rate, but we know a certain percentage will respond and others won’t. Unfortunately, we cannot predict which patients will respond to therapy and do well on trial, but we are always optimistic about all our patients on study.  (Watch Dr. Apolo and other researchers highlight bladder cancer clinical trials here.)

We hope for a 100% response rate, but we know a certain percentage will respond and others won’t.

“Even when a patient doesn’t respond, we still learn a lot by analyzing the clinical and biological features of that patient’s tumor.”

We are trying to learn more about overcoming resistance to certain therapies, including immunotherapy, and how we can prime a tumor to make it more susceptible to immunotherapy. Is it combination therapies? Selecting patients with certain genetic traits? All these data are evaluated in a clinical trial to help get higher responses in subsequent clinical trials.

Researchers and scientists often forget to tell clinical trial patients how truly valuable they are. We use data and images from patients like Mr. Z. for teaching and understanding patterns of disease. We use their tumors as controls for laboratory experiments or clinical assays. Sometimes we grow their tumors in the laboratory using cell cultures and mouse models to study additional therapies or to just understand the molecular drivers of the tumor.

“Patients live on forever when they participate in a clinical trial. They are never forgotten.”

Patients don’t usually see the manuscripts that come from clinical trial research in which they participate or the laboratory experiments that we were able to conduct based on their tumor. Patients don’t see the radiology images we use to follow tumors and how we review them over and over again to detect patterns of metastases or to find better methods of assessing response to therapy. Mr. Z. was part of a clinical trial that is still ongoing. We review his demographics, all his documented side effects, and his radiographic scans every time we analyze the clinical trial data.

Every time I use data derived from a patient in one of our clinical trials, I think about them; I think about their family, their loved ones. I remember the conversations we had while they were in clinic about politics, travel and the hobbies they enjoyed. I have memories of hundreds of study patients, and I am very grateful to each of them for their altruistic contribution to my research.