Care and monitoring after CAR T-cell therapy can feel overwhelming—but it doesn’t have to be. This animated explainer video provides advice to help care partners support recovery, identify common symptoms and side effects, communicate with the healthcare team, and adjust to life after treatment while protecting their own well-being.
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Transcript
Hi! I’m Shelly, and I’m a nurse practitioner specializing in myeloma care. Thanks for being here.
Today we’re going to talk about the role of care partners after a loved one has undergone the CAR T-cell therapy process. This next phase of active caregiving focuses on recovery, monitoring, and adjusting to a new normal—together.
Once you return home, one of your tasks is to keep the healthcare team informed about how the patient is doing. Here are some tips to help you stay organized and on track:
- Keep a health journal. Be sure to note any symptoms, medications, and questions, so you can communicate effectively with the healthcare team.
- Track symptoms daily. Look for changes in behavior, including coordination, speech, and memory. Even small changes are worth sharing with the doctor.
- Watch for delayed side effects. Some side effects, like neurological issues or infections, can appear days—or even weeks—later. Fever, confusion, headache, tremors, and any other changes should be reported to the healthcare team as soon as possible.
- And, keep a list of important contacts on hand. This includes a phone number for nights and weekends, a daytime contact, as well as access to messaging via the patient portal.
Another important step in caring for your loved one is preventing infection. Your loved one’s immune system may be weakened after CAR T. You can help protect them by:
- Keeping the home clean. Sanitizing surfaces and washing your hands regularly can reduce infection risk.
- Limiting exposure to illness. Anyone living in the home should avoid crowded places and contact with people who may be sick. Consider keeping visitors to a minimum or encourage visits by phone or video calls.
- Practicing food safety. Make sure to wash all produce, cook meats and eggs to well-done temperatures, avoid raw seafood, and consume only pasteurized dairy products. Eating a healthy diet and staying hydrated may also reduce infection risk.
As you return to your daily life, both you and your loved one may experience emotional changes such as anxiety, mood changes or frustrations, and general difficulty adjusting to daily life. As a care partner, your support is important, but you are not expected to handle this alone. Encourage open conversation and consider involving a mental health professional if needed.
And, of course, your well-being is just as important. Taking care of yourself remains a vital part of being a care partner. Even after some time has passed, you should stay mindful of any lingering stress or fatigue. You can help to combat this by:
- Getting proper sleep, exercising, and eating a heart-healthy diet.
- You should also get back to your own routines and identity. Make time for hobbies, alone time, and friends.
- It’s also a good idea to ask for help. This could be simply reaching out to friends and family to talk, or involving another care partner to give you a break.
And, above all, practice self-compassion. Caring for someone else is a big responsibility, and it’s important to recognize your own needs along the way.
Remember, everyone’s CAR T-cell therapy experience is different—but you are not alone. With good support, and understanding, you can continue to care for your loved one while also caring for yourself.
For more care partner resources and support, visit powerfulpatients.org or scan the QR code on your screen. Thanks for watching!