Recovery After Myeloma CAR T-Cell Therapy: What to Expect

CAR T-cell therapy for multiple myeloma is a treatment that modifies a patient’s own immune cells to recognize and attack myeloma cells. While the treatment takes place in the hospital, recovery continues at home. Knowing what to expect—and understanding which changes to watch for—can help you feel more prepared as you heal.

Let’s walk through a few important reminders:

First, recovery takes time.

Everyone recovers from CAR T-cell therapy differently. You may begin to feel better within a few weeks, or it may take several months to regain your energy and strength. During recovery, you may experience:

• Fatigue or low energy.
• Changes in memory, concentration, or thinking.
• Changes in appetite.
• And emotional ups and downs.

Once you return home, continue to watch for new or changing symptoms – side effects of CAR T-cell therapy can develop or continue for weeks, or even months, after treatment. It’s important to focus on rest and healing during this time.

Secondly, fatigue can be manageable.

This is a common side effect following CAR T-cell therapy. Treatment-related fatigue can feel different from ordinary tiredness – your body is using a great deal of energy to recover from both the myeloma and its treatment. To help you conserve energy, it may be helpful to:

• Plan important activities for times when your energy is highest.
• Pace yourself throughout the day.
• Schedule rest before you become completely exhausted.
• And, ask family members or friends for help with everyday tasks.

If your fatigue suddenly becomes worse, makes daily activities difficult, or occurs along with other new symptoms, you should let your healthcare team know right away.

Next, a care partner is a vital part of your recovery.

A care partner, such as a family member or close friend, can help you follow your care plan, keep track of medications and appointments, monitor for side effects, and communicate concerns to your healthcare team.

Your care partner may also notice changes that you do not recognize yourself, such as changes in your behavior, like confusion or speech issues, or difficulty with everyday activities. The care partner should let the healthcare team know if anything is different or concerning.

And, be sure to take care of your emotional health.

As you return back to your lifestyle, reconnect with family and friends, and resume activities you enjoy, you may experience a range of emotions. Feeling anxious, uncertain, frustrated, or overwhelmed at times is understandable.

Your emotional well-being is an essential part of your recovery. Talk openly with people you trust, consider joining a support group, or ask your healthcare team about counseling and other resources.

You should always stay connected with your care team.

Keep your follow-up appointments, even when you are feeling well. These visits allow your healthcare team to monitor your recovery, identify potential side effects early, and answer your questions. And, always let your healthcare team know about any issues that you may experience – they want to know how you are feeling so that they can help.

Finally, don’t forget to celebrate your progress.

Recovery does not happen all at once. Set realistic goals and recognize the small milestones along the way – celebrate moments such as taking a longer walk, preparing a meal, spending time with loved ones, or simply having a better day than the day before.

Healing takes time, and progress may come gradually. Be patient with yourself, accept help when you need it, and remember that you do not have to navigate recovery alone.

To learn more about myeloma CAR T-cell therapy, visit powerfulpatients.org.