For Caregivers
A caregiver is a loved one or friend who provides critical support for a patient receiving CAR T-cell therapy. A caregiver helps during the evaluation and preparative phase, admission, and after discharge. In some cases, there is a caregiving team that will support the patient.
Some important caregiver responsibilities include:
It is often helpful to have a team of family and friends available to take on different responsibilities such as caring for children, managing household tasks (e.g., paying bills, getting groceries), or giving the primary caregiver a break.
What to watch for and what to do
Monitoring for side effects from CAR T-cell therapy is one of the most important roles of the caregiver. If you notice any of the following symptoms, page the patient's physician right away (617-632-3352):
Remember to always carry your CAR T wallet card with you to identify you as a CAR T patient with any medical professional.
Some important caregiver responsibilities include:
- Attending all appointments and providing transportation to/from each visit (before and after treatment)
- Monitoring symptoms while the patient is in the hospital and after discharge, and contacting the care team if necessary. Caregivers are often the first to recognize changes in behavior such as confusion, or difficulty speaking or understanding.
- Staying with the patient at all times (at home or in short-term accommodations) to monitor for side effects for the first 30 days after the CAR T-cell infusion
- Updating family and friends on the patient’s treatment and well-being
- Coordinating visitors to the hospital and when the patient returns home
It is often helpful to have a team of family and friends available to take on different responsibilities such as caring for children, managing household tasks (e.g., paying bills, getting groceries), or giving the primary caregiver a break.
What to watch for and what to do
Monitoring for side effects from CAR T-cell therapy is one of the most important roles of the caregiver. If you notice any of the following symptoms, page the patient's physician right away (617-632-3352):
- Temp greater than 100.4°F
- ICE (Immune Effector Cell-associated Encephalopathy) score less than 10
- Chills or shaking
- Fainting
- Irregular or fast heartbeat
- Severe nausea, vomiting that prevents eating
- Diarrhea (more than 4-5 loose bowel movements per day)
- Changes in your thinking (confusion, hallucinations/seeing things that aren’t there, delirium/changes in their attention)
- Change in personality (patients not acting like themselves)
- Problems speaking or finding words, slower speech
- Seizure-like activity (body shaking/tremors, blank stare but not talking)
- Shortness of breath, difficulty breathing
- Severe or unusual headaches
- Blurry or double vision
- Bleeding from gums, nose, mouth
- Blood in urine, stool, or sputum
Remember to always carry your CAR T wallet card with you to identify you as a CAR T patient with any medical professional.