Following pretreatment and your one-time CAR T cell therapy infusion, you will enter a new chapter of your journey and embrace your new normal.
Watch the video below to learn about monitoring and life after CAR T cell therapy.
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Beginning right after infusion, you will start the short-term monitoring period. During this time, your specialized CAR T cell therapy care team will watch for side effects, especially immune therapy-specific side effects like cytokine release syndrome, or CRS, and neurologic toxicities. As these are not the only side effects, your cell therapy team will provide specific details and instructions.
If you and/or your care partner notice any symptoms, make sure to notify your CAR T treatment team so they can manage any side effects.
The timing of these side effects varies by patient and based on the CAR T cell therapy received but often they occur within the first few weeks after infusion. Therefore, you will be monitored closely nearby the treatment center for several weeks, and you may require:
Similarly to the monitoring and care you may have received around other cancer treatments, your care team is prepared to manage side effects and your care partner, or partners, will be there to support you during this period.
After the initial close monitoring period, if you were referred for CAR T cell therapy, you will transition from the CAR T treatment center back to your local doctor. Your local doctor will be in close communication with the CAR T treatment center to collaborate and develop a care plan that is best for you.
Because the CAR T cells can persist after treatment, you will need to have your blood checked regularly. You will also need to be monitored long-term for side effects, disease status, and other cancers.
Your doctor will provide instruction regarding:
Initially, you may be monitored frequently, or according to the timeline your care team feels is appropriate.
As time passes, your doctor may recommend your follow-up appointments, testing procedures, and check-ins become less and less frequent.
Transitioning to life after regular cancer treatment may feel a bit unclear and adjusting to your new normal may take time. Feelings of uncertainty or fear of cancer recurrence are very normal.
Remember: This information is not intended to replace your healthcare providers' guidance. Your CAR T and local care teams are there for you, and you can reach out to them with any concerns you may have. They can provide resources, advice, and educational tools to support everyday life, like healthy lifestyle habits. In addition to having your social support system of friends and family, you may find joining a support group to be helpful during this time.
As you learn your new normal, talk to your doctor about engaging in or resuming activities that may help support your transition, such as:
Eventually you will transition to your new normal and begin daily activities, along with the continued support of your care partner and treatment care team.
Maintaining a well balanced diet, resting, exercising, and prioritizing your well-being are vital aspects of your journey.
Remember to stay positive
Take things one day at a time and remind yourself that each day is a fresh start.
Visit these independent organizations and support communities to learn more about cancer recovery and survivorship:
Learn tips and suggestions around nutrition, wellness, and healthy choices in this guide.
Download Nutrition and Wellness with CAR T Cell Therapy (PDF)
