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After CAR T-cell therapy, contact your treatment team promptly about concerning symptoms and follow the center’s written monitoring and emergency plan. Fever, breathing or circulation problems, confusion, difficulty speaking, unusual drowsiness, loss of balance, or seizures can signal serious complications. Do not try to diagnose or treat suspected CRS or ICANS at home.
Know which symptoms need urgent attention
Side effects can overlap, and a symptom’s cause may not be obvious at home. Report changes to the CAR T team rather than trying to decide whether they are CRS, ICANS, or an ordinary treatment effect.
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Cytokine release syndrome (CRS)
CRS is a systemic inflammatory reaction. Possible symptoms include fever, chills, nausea or vomiting, headache, rash, rapid heartbeat, low blood pressure, dizziness, and trouble breathing. The National Cancer Institute lists fever, nausea, headache, rash, rapid heartbeat, low blood pressure, and trouble breathing among CRS signs and symptoms. Severe CRS can be life-threatening.
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ICANS is a neurological toxicity. Watch for confusion or agitation, unusual sleepiness or difficulty waking, trouble speaking or understanding, tremors, loss of balance, and seizures. Treat these changes as urgent and contact the care team immediately using the response in the patient’s CAR T plan.
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What to do when symptoms appear
- Use the CAR T center’s instructions. Keep its daytime and after-hours contact numbers and written emergency directions where both the patient and caregiver can find them. The National Institutes of Health Clinical Center’s 2019 handout, written for its own clinical research participants, advises contacting the medical team or going to a local emergency room for CRS symptoms at home. Your own center’s plan takes precedence because instructions may differ.
- Call promptly about fever or systemic symptoms. The National Cancer Institute’s general cancer-treatment guidance identifies a temperature of 100.5°F (38°C) or higher as a fever to note. This is not a CAR T-specific threshold: use the fever threshold and escalation instructions given by the treating center. If available, a digital thermometer can help you report a measured temperature, but it cannot rule out CRS or make home treatment appropriate.
- Escalate neurological symptoms immediately. For confusion, difficulty speaking or understanding, unusual drowsiness, tremors, loss of balance, or seizure symptoms, contact the care team and follow the emergency response in the patient’s plan. Do not wait to see whether suspected CRS or ICANS goes away on its own.
- For severe or rapidly worsening symptoms, follow the emergency plan. Trouble breathing, faintness or signs of low blood pressure, a seizure, or difficulty waking may require emergency care. Use the center’s directions for getting help; if you cannot reach the team, follow the plan’s instructions for emergency services or an emergency department.
What treatment and support may involve
CRS and ICANS are assessed and managed by clinicians. Depending on the person’s symptoms and condition, clinical treatment may include tocilizumab, steroids, IV fluids, oxygen, or support for blood pressure. These are not a home-treatment checklist: do not start medicines or other remedies for suspected CRS or ICANS unless the CAR T team directs you to.
Other problems to report
CAR T therapy can also be associated with infection risk, low blood counts, infusion reactions, and abnormal electrolyte levels. Tell the treatment team about new or worsening problems so clinicians can decide whether evaluation or treatment is needed; do not assume a symptom is harmless because it does not match a CRS or ICANS list.
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Plan for monitoring and activity restrictions
The American Cancer Society describes close observation for several weeks after CAR T-cell treatment and advises avoiding driving, heavy machinery, and other dangerous activities for at least eight weeks after treatment. These are general patient-education recommendations, not a replacement for individualized instructions: follow your center’s monitoring schedule and its guidance about when activities are safe.
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