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Johns Hopkins Pediatric

Managing Side Effects of Immunotherapy


A Conversation with Jarushka Naidoo

Immunotherapy is a promising new therapy that activates the immune system to attack cancer cells. It has a completely different side effect profile than chemotherapy, and that has caught some physicians off guard. Doctors—including emergency room physicians, dermatologists and gastroenterologists—need to learn about immunotherapy.

What do patients and doctors need to know about immunotherapy side effects?

The Johns Hopkins Kimmel Cancer Center’s Bloomberg~Kimmel Institute for Cancer Immunotherapy is leading the way and setting national standards for recognizing and managing immunotherapy side effects. These side effects can present with a wide range of symptoms, so their management requires the cooperation of many experts. We have assembled a group of specialists for every part of the body that has the potential for adverse reactions to immunotherapy, and they are on call for us 24/7. It is important for doctors and patients to call right away if they experience any symptoms, even if they believe them to be minor.

What types of side effects should doctors and patients look for?

Patients can experience side effects that include anything that ends in –itis. They are typically ones that involve inflammation, such as colitis (inflammation of the colon) and the worst of them, pneumonitis (inflammation of the lungs). These types of side effects aren’t unexpected when taking medicines that tinker with the immune system, and inflammation is considered an immune-related biochemical process. Aside from inflammation-related side effects, fatigue often tops the list of side effects. Some patients also experience low thyroid hormone levels. A new patient study is exploring a connection between immunotherapy and the development of inflammatory arthritis.

The toxic effects of immunotherapy drugs can occur anytime during a patient’s treatment, even after patients stop taking the drugs. If side effects occur, they are typically at low-grade levels, but some have more severe effects.

Treatment includes oral corticosteroids, and, for severe problems, hospitalizations may be necessary.

How are you educating patients about immunotherapy side effects?

Our patients come from all over the country. They could end up in emergency rooms or offices with doctors who do not understand patients’ symptoms or mistake them for infections and provide incorrect treatment with devastating consequences. To prevent this, all of our immunotherapy patients are given a wallet card to carry with them at all times to share with any doctor they see. The card says, “I’m on immunotherapy. Please contact my oncologist.” The card provides contact information and the name of the drug or drugs patients are on. We also have a patient hotline, pager and email system.

What about doctors?

With support from the Cole Foundation, I am attending national cancer meetings with a Bloomberg~Kimmel Institute nurse to educate other doctors, and working with organizations like the National Comprehensive Cancer Network, of which I am a member, to share what we have learned and to establish standards for managing immunotherapy side effects. Julie Brahmer is co-chair of the toxicity guidelines committees of the American Society of Clinical Oncology, National Comprehensive Cancer Network and the Society for the Immunotherapy of Cancer. We are also working on a web-based course for doctors.

To discuss or refer a patient, call 410-955-LUNG.

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