Immune Effector Cell-Associated Neurotoxicity Syndrome (ICANS)

Immune effector cell-associated neurotoxicity syndrome (ICANS) is a clinical and neuropsychiatric syndrome that can occur in the days to weeks following treatment with certain types of immunotherapy, especially immune effector cell (IEC) and T-cell engaging therapies. 

ICANS affects a person’s nervous system. It is the second most common side effect of CAR T-cell therapy, often following cytokine release syndrome. 

Symptoms to watch for include the following:

  • Confusion
  • Behavioral changes
  • Inability to speak or understand speech
  • Attention, thinking and memory problems
  • Muscle weakness, jerks and twitching
  • Headache
  • Seizures

When should you call your health care provider? 

Once treatment is underway, be prepared for side effects before they occur. If you develop any of the signs of an immune-related response, contact your health care provider right away. Do not delay. As mentioned, some are mild but can become severe or even life threatening without swift medical attention. 

Keep information about your diagnosis and your treatment, including the name of the drug(s), your oncologist and your cancer center, with you at all times. This is critical should you have an emergency or experience a side effect and you are not able to seek care from a health care provider who is familiar with your treatment. Always tell any health care team treating you that you are receiving immunotherapy treatment. Stay alert for symptoms for up to 2 years following treatment.