Patients Should Actively Communicate Symptoms While Receiving Immunotherapy

Communicating with doctors and care teams about symptoms is essential for patients with cancer who receive immune checkpoint inhibitors, an expert told CURE®.

An immune checkpoint inhibitor (ICI), as the National Cancer Institute defines, is a type of immunotherapy drug that blocks proteins — or checkpoints — made from certain types of immune system cells, such as T cells and some cancer cells. When the drug blocks checkpoints, it allows T cells to effectively destroy cancer cells.

“Because (ICIs are) a relatively newer cancer drug, or a class of cancer drugs, we still have a lot to learn about exactly the kinds of symptoms and side effects and complications that patients have on the medications,” said Patricia Moreno, clinical psychologist and assistant professor from the department of public health sciences at the University of Miami Miller School of Medicine, told CURE®.

Moreno presented on the quality of life and symptomatic toxicities for patients receiving immune checkpoint inhibitors at the 2023 Sylvester Cancer Survivorship Symposium. These “symptomatic toxicities,” she defined, were complications and side effects patients experienced when receiving ICIs, although research has determined that many related symptoms are mild and “very well tolerated” among patients.

She also noted that what patients should know regarding symptomatic toxicities varies from patient to patient.

“It depends a lot on the communication the patient is having with their cancer care team or their oncologist and what they’re told to expect on immune checkpoint inhibitors. I would say the most important thing that a patient can do is ask questions and make sure to advocate for themselves,” Moreno explained.

“(This is) so they really understand what the medication is, how it might affect their body, and then how they can communicate to their team when they are experiencing a side effect or a symptom so that they can address that symptom because we have really effective strategies or treatments, oftentimes to manage symptoms, and that keeps people on their treatments longer, which is exactly what (they) want when a treatment might be working really well for (them),” she said.

Moreno emphasized that with consistent communication between patients and their care teams, patients can receive the best care possible.

“The key takeaway for patients is to make sure that (they) communicate with (their) care team. When they ask, ‘How are you feeling? How are you doing on your immune checkpoint inhibitor?’ (Patients should) tell them, ‘This is what I’m feeling in my body. These are the symptoms; these are the side effects.’

“So that, again, if there’s anything that comes up, we oftentimes have treatments and ways to manage that so that (they) can both live as well as possible while getting an effective cancer treatment… So, the earlier we catch (symptoms) when they’re more mild or more moderate, the better we can do at avoiding bigger complications or issues down the line,” Moreno said.

To continue the flow of communication between patients and their care teams, Moreno recommended patients should ask important questions — an essential way they can advocate for themselves.

“Patients should find out what the care team’s plan is for the treatment of their cancer. So, that means that they should try to understand what the diagnosis is (and) what it means. And if (they) don’t understand what it means, continue to ask questions until (they) understand more about (their) diagnosis, and (they) feel like (they’re) able to describe it to a loved one or friend or a family member,” she noted.

“And then, (patients) should talk jointly about what (their) goals are for (their) care,” Moreno said. “And then once (they’re) on a treatment plan, (they) should also have a very clear plan for communicating around symptoms, side effects, complications (and) anything that comes up so that (they) can always address those as early as possible. And again, avoid any sort of ballooning of issues into bigger issues.”

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