In addition to helping your immune system fight cancer, CAR T can cause your immune system to become overactive or affect the rest of your body in unwanted ways.
Cytokine release syndrome and neurotoxicity are two side effects that many patients have experienced and can become life-threatening. These are not all the possible side effects of CAR T. There are other CAR T side effects. Please see BMT InfoNet to learn more about side effects. Each person’s experience and potential side effects will be different. If you and your caregiver notice any symptoms, make sure to tell your CAR T treatment team so they can manage them.
Your CAR T treatment team is trained to monitor and manage any side effects.
Some examples of the symptoms you may feel are below.
For at least four weeks after your CAR T infusion, you'll stay at or near the CAR T medical center so that your CAR T treatment team can monitor and manage any side effects.
You and your caregiver will be an important part of watching for side effects. Your CAR T treatment team will teach you about what to watch out for. It's important to share how you are feeling, and for your caregiver to watch out for any side effects that you may not recognize yourself.
When your CAR T treatment team feels you are ready, you will no longer be required to be at or near the CAR T medical center. They will provide instructions for what to do if side effects come up.
At the CAR T medical center, your CAR T treatment team may ask you to do some tasks to see if there have been any changes in your mental and physical abilities. For example, they may ask you to:
- write something, like a standard sentence
- say something, like naming the date and location you are in, pointing to and naming objects in the room, counting backwards from 100 by increments of 10
- follow a simple instruction, like holding up two fingers
Your CAR T treatment team will also watch for any changes in how your body and organs are working. For example, they will check:
- your temperature to see if you have a fever or an elevated temperature (over 100.4°F or 38ºC)
- your blood pressure to see if you have low blood pressure (hypotension)
- your oxygen levels to see if you have low oxygen levels (hypoxia)
- your blood test results to see if there is any change in how your internal organs are working
Your CAR T treatment team may also run other tests that aren't on this list.