How To Use This Guide
Our CAR T Patient and Caregiver Guide is designed for adult cancer patients and their caregivers who have been referred to a cancer center that offers CAR T cell therapy. CAR T cell therapy is a new type of cancer treatment that may be a good option for some patients. This guide provides step-by-step information from referral to treatment to the follow-up process. Included are questions for your treatment team, planning checklists, tips for coping, and a sample timeline.
Many people travel from out of town to receive this therapy. There are several steps in the CAR T therapy process. Each step is different and requires patients to prepare in different ways. Because of this, patients and caregivers need to deal with everything involved in this week’s appointments, while at the same time plan for next month’s appointments. We hope this guide makes your CAR T journey easier to manage.
If you and the CAR T team determine CAR T is right for you, this guide can help you and your caregiver work with your doctors to plan and prepare for all the steps in the CAR T process. You can keep this guide with you and refer to it regularly to help you plan ahead, advocate for yourself, and map out what your path looks like.
This guide is broken up into 3 sections, with the first 2 sections building on each other:
Learn about how to get started, clinical trials, requirements for caregivers, and possible costs.
Chapter 1: What is CAR T Cell Therapy?
Chapter 2: Outline of CAR T Journey
Chapter 3: CAR T Clinical Trials
Chapter 4: CAR T Caregivers & Support Team
Chapter 5: Costs and Logistics of CAR T
Get an overview of the process, from the referral phase to post-treatment care. This section includes checklists to help you think through the right questions to ask, what to expect, and how to develop a logistics plan.
Chapter 6: Referral to CAR T Program
Chapter 7: Your 1st Appointment
Chapter 8: Screening Tests
Chapter 9: Treatment to Qualify for CAR T (if needed)
Chapter 10: Collecting Your T Cells — Apheresis
Chapter 11: Bridging Therapy (if needed)
Chapter 12: Conditioning (Lymphodepleting) Chemotherapy
Chapter 13: CAR T Cell Infusion
Chapter 14: Weeks 1–8 After Infusion
Chapter 15: Weeks 9–52 After Infusion
Find helpful organizations and access tools to keep track of important details like appointments, contacts, and medications.
- My Treatment Team Contacts
- Resources for Lodging
- Resources for Transportation
- Resources for Patients & Caregivers
- Resources for Clinical Trials
- Record Keeping
You do not have to go through this alone.
Although this guide talks about what “you” need to do, we hope a larger group of people will help you through the process. So “you” really means you and your primary caregiver(s), as well as members of your CAR T team and larger support network. Ideally, your larger support network can help you with the many different parts of the planning and therapy process.
You and your primary caregiver should accept all the help and support you can. This support network may include members of your CAR T team such as your oncology social worker, patient navigator, CAR T nurse, and others. Friends and family can help you with many of your planning and logistic tasks, even if they are not able to be in-person caregivers during your treatment. Tasks may include helping you find lodging or transportation if you are traveling for treatment, driving you during the period you are home but unable to drive, or keeping your larger support network updated with your treatment and results.