What can I expect with CAR T-cell therapy?

What can I expect with CAR T?

CAR T-cell therapy (CAR T) has some unique considerations that may be different from other treatments you’re familiar with, such as the way side effects are monitored. Knowing what to expect may help you better prepare for CAR T, find support you may need, and reduce delays and stress.

Watch: Preparing for CAR T

Watch: Preparing for CAR T

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What are some important things to know about CAR T?

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CAR T is only available at specialized medical centers

In the US, CAR T isn't offered at every cancer clinic—it's only available at specialized medical centers that are certified to provide CAR T. These centers have treatment teams who are specifically trained to support you through each step of CAR T, from initial consultation to side effects management.

If you don't live close to a CAR T medical center, you may need to travel, find lodging, and consider other costs

You can expect to make more than one trip to a CAR T medical center, and may need to stay at a center or nearby. This may mean extra planning and expenses to consider, such as transportation, hotel stays, and care for your home, loved ones, or pets. However, support may be available.

There will be waiting and time required for all steps of the CAR T process

Each step of CAR T can take time to organize and prepare for. It will also take time for your CAR T cells to be made and shipped to your CAR T medical center. Delays can happen, but your CAR T treatment team will keep you updated.

Speaking to your healthcare team early can be helpful to get the process started as soon as possible.

After your CAR T infusion, you'll be closely monitored for possible side effects and will need a dedicated caregiver

Patients can experience side effects which can become life-threatening. You will need to stay near a CAR T medical center for at least 4 weeks after infusion, where you’ll be monitored by your CAR T treatment team. CAR T treatment teams are specifically trained and well equipped to manage side effects.

Some symptoms can be hard for patients to recognize, so your caregiver will need to be with you to watch out for side effects.

Your caregiver will continue to be an important part of your care once you return home. For example, they may need to help with transportation as you should not drive for 8 weeks after treatment. Visit the For caregivers page to learn more.

Illustration of three healthcare providers with text stating: You’re not alone! We’re here to help.

All of this might sound like a lot to take on, but remember that:

after receiving CAR T, many patients saw some, or all, symptoms of cancer disappear. There is a chance that cancer symptoms may come back
your CAR T treatment team will be there every step of the way
people in different circumstances have been able to receive CAR T
you can visit the support page to learn about help that may be available if needed
the entire treatment process generally only happens once

You can let your healthcare team know if you'd like a CAR T consultation, even if you still need time to think through the details. Ask your healthcare team if there's someone who can answer your questions and walk you through what that process might look like. Starting the process sooner can be helpful since each step of CAR T takes time to organize and prepare for.

Visit BMT InfoNet to find a CAR T medical center near you.

What are the possible side effects?

While CAR T can help your immune system fight cancer, it can also cause your immune system to become overactive or affect the rest of your body in unwanted ways. Side effects can happen with CAR T. Side effects are well studied, and processes for managing them have evolved over time. Your CAR T treatment team is specifically trained to monitor and manage any side effects.

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.

What are the symptoms of cytokine release syndrome and neurotoxicity?

Some examples of the symptoms you may feel are below.

With cytokine release syndrome you may feel:

feverish (feeling hot or chills)
muscle aches, pain
tired
a loss of appetite

With neurotoxicity you may experience:

changes to your mental state
confusion
difficulty with movement or language
seizures

What questions might I ask my CAR T treatment team?

What are common side effects and when might they happen?
What other side effects could I expect and when might they happen?
How can my caregiver and I watch out for side effects?

How will side effects be monitored?

Your CAR T treatment team will monitor and manage any side effects you may experience. Side effects generally occur within the first few weeks and are treated at a CAR T medical center. You'll stay near a CAR T medical center for at least four weeks after your CAR T infusion to be close to your team. You may be required to stay at the center where you received your infusion for part of this time.

You and your caregiver will be an important part of watching for side effects. Your CAR T treatment team will tell you 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 near a CAR T medical center. Side effects can still occur and the CAR T treatment team will provide instructions on what to do if they come up.

Illustration of doctor explaining side effects to patient and caregiver.

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How will my CAR T treatment team monitor for side effects?

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.

Where can I learn more about side effects and how they're managed?

BMT InfoNet: Side Effects of CAR T-cell Therapy
National Comprehensive Cancer Network (NCCN): Patient Resources—click on 'Guidelines for Patients' then 'Immunotherapy Side Effects: CAR T-Cell Therapy' near the bottom of the page