Learn how your loved one with myeloma may need help from a care partner during CAR-T therapy. Knowing what to expect can help you feel more prepared for the role. 

Transportation and appointments 

After CAR T-cell therapy, the patient must stay near the infusion center and cannot drive for two weeks. Some patients may stay in the hospital during this time. If an inpatient stay is not required, a care partner is needed to help with transportation to medical appointments. Care partners often:

• Drive the patient to and from the clinic
• Write down important medical information
• Ask the care team questions on behalf of the patient
• Keep a log of side effects or concerns

Being present at appointments also ensures the care plan is followed correctly. 

Daily care tasks after CAR T-cell therapy

CAR T-cell therapy often leads to fatigue and other side effects for a period of time. As a result, the person who received treatment may need help with everyday activities during this season. These can include: 

• Grocery shopping
• Cooking and meal preparation
• Managing bills and household responsibilities
• Housekeeping tasks
• Helping patients stay as active as possible to maintain strength

Taking care of these tasks allows the patient to focus on resting and recovering. 

Watching for side effects of CAR-T

CAR T-cell therapy can cause side effects such as cytokine release syndrome (CRS) and neurotoxicity. Cytokine release syndrome can include fever, low blood pressure, and breathing problems. Neurotoxicity can include confusion, slurred speech, or trouble with memory. 

A caregiver plays a vital role in watching for these side effects. You may need to check:

• Temperature using a digital thermometer
• Blood pressure with an automated cuff
• Blood oxygen levels with a pulse oximeter
• Mental status changes by asking simple questions or observing unusual behavior

If you notice changes, contact the care team immediately. Quick action can prevent serious complications. For more information, visit the following section in this guide: Side Effect Management of CAR T-cell Therapy for Multiple Myeloma.

Reducing the risk of infections 

After CAR T-cell therapy, the patient’s immune system may be weaker than normal. To help reduce infection risk:

• Practice good hand hygiene
• Prepare food safely
• Monitor for fever, cough, or other symptoms of infection

Ask the medical team about a re-vaccination schedule following CAR-T and other infection-prevention steps to keep your loved one safe. 

Emotional support 

Going through CAR T-cell therapy can be stressful. People with myeloma may experience mood changes, sadness, or anxiety. A caregiver can provide encouragement and listen when needed. Watching for signs of emotional distress is also part of caregiving.

If emotions become too overwhelming, encourage your loved one to talk with a mental health professional or their care team.

CAR-T finance planning 

CAR T-cell therapy can be expensive depending on insurance coverage. There can also be added costs like transportation, lodging near the medical center, and caregiving expenses. Care partners can help by:

• Talking to social workers or financial counselors
• Applying for financial aid through support groups
• Keeping track of bills and insurance coverage

Understanding these costs ahead of time helps reduce financial stress. Click here to access resources that may support you in managing CAR-T costs.