How to prepare

This section will explain some of the things that may happen before you start treatment.  We have also included some tips to help you feel prepared.

Use the journal provided to you by your healthcare team to note key contact information, see upcoming appointments, record side effects and capture any questions you may have.

Meeting the healthcare team

CAR T cell therapy involves a number of people who are all specialised in different areas of the treatment process and support.  

These people are your healthcare team. Healthcare teams vary from person to person, depending on your individual needs but could include a Haematologist, Clinical nurse specialist, Neurologist, Psychologist and a Dietician.

It’s helpful to write down the names and roles of the people you meet. At some point you may have questions for them or require their advice. 

Hospital appointments

Before starting CAR T cell therapy, you may have a number of hospital appointments. Your healthcare team will advise you on these appointments and let you know what each one is for. 

During the appointments you may be given some further tests, such as checking your lung and heart function. More information on tests can be found here.  Any infection will be treated before you start CAR T cell therapy.

Your healthcare team will want to make sure you’ve completed all relevant consent forms, including the Patient Acknowledgment Form. They may also want to go over and schedule dates for follow up appointments. 

How to prepare

1. It’s okay to ask your healthcare team questions. You can write any questions in advance within your journal and encourage those around you to ask questions too. If you feel you don’t have time to ask, hand them to a nurse who can give them to your doctor.
2. If you can, wear loose-fitting, comfortable clothing to your hospital appointments. You may also want to pack something to eat and drink and bring something to read or watch along with headphones. 
3. If possible, check with your healthcare team about how long you may be needed at the hospital. This can help you plan for your time there and make any necessary arrangements around it. 
4. Find out the directions and contact information for the hospital here. You may also want to share this information with friends and family. 
5. Invite a friend or family member to accompany you to hospital appointments. While this isn’t essential, it may be useful for both of you to meet the doctor and healthcare team early on, as it’s a chance to better understand what the treatment process involves. They can also help note down any key information.