The CAR T-Cell Therapy Clinical Journey Guide

This Guide is intended for people enrolled (or thinking of enrolling) in a CAR T-Cell therapy clinical trial. It contains information for both patients and carers. The guide is available as a PDF to download or view online. An overview of its contents, along with links to view the full information for each section, are shown below.

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Within the guide you will find:

  • General information about CAR T-cell therapy clinical trials
  • An explanation of how CAR T-cell therapy works
  • What you can expect during each step of the process
  • Information about side effects
  • Information specifically for carers
  • Guidance on how and where to find support

You will learn from your clinical research team exactly what to expect in the clinical trial you are considering. The information and guidance provided here is not meant to replace that information. It should serve more like a reference for you – a place to start when you have questions to help prepare you for conversations with your healthcare team.

The Guide contains a lot of information and is not meant to be read in one sitting. Words or medical terms that might be unfamiliar to you are shown in italics. You’ll find definitions on the Glossary page of this site as well as in the PDF document. Don’t hesitate to ask a member of your healthcare or clinical research team about anything you don’t understand.

To help you navigate through the Guide, the contents list below acts as a direct link to the relevant pages of the PDF. Clicking these links will open up the full document in a new window, at the page you have selected.

Remember that CAR T-cell therapy is a newer therapy that is quickly changing as new discoveries are made. Always look first to the information and guidance given by your healthcare and clinical research teams for information specific to your clinical trial.

You, your carer, your loved ones, and your clinical research and healthcare teams are all partners on this CAR T-cell therapy journey. You all have the same goal: ensuring that you are well cared for and safe throughout this clinical trial. This Guide is meant to help you learn about the process so that you will know what questions to ask and what to expect.

We are deeply grateful to all patients who have participated in CAR T-cell therapy clinical trials and especially for the guidance of the patients and carers in the CAR T Advisory Council. Without these contributions, this work would not have been possible.

The CAR T-Cell Therapy Process

The diagram below shows an overview of the CAR T-Cell Therapy Process. Each of the steps is further explained throughout the guide.

A flowchart illustrating the CAR T Cell Therapy process. Steps include eligibility screening, collection/transport, cell engineering, lymphodepleting chemotherapy, infusion, and monitoring. Details of the manufacturing steps are highlighted to the right.

Contents

Expand the contents lists below to view an introduction to each section, as well as an outline of the full information contained in the guide.

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Additional Resources

There are hundreds of free or discounted services for those being treated for cancer and their families. This page shows only a fraction of them. We encourage you to reach out to patient organisations for help. Most list resources on their websites and all have helplines where you can request individual assistance.

The resources have been divided into the sections below.

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  • Patient Organisations

    Patient organisations provide a wide range of services for the cancer community. These include disease information in printed and digital form, videos, live webinars, in-person events (to resume post-COVID-19), assistance in finding a clinical trial, financial assistance, counselling services, research funding, policy advocacy efforts, professionally led online support groups, discussion boards, pet care support and more.

    Blood Cancer UK

    Their blood cancer support line is a free and confidential service for all people with blood cancer, their friends and family. A team of trained blood cancer support officers who can help with emotional and practical support and information about blood cancer.

    T: +44 (0)808 2080 888

    Visit website

    Leukaemia Care

    A national blood cancer support charity working with patients, family and friends affected by blood cancer. Their support specialists can help you find a service that’s right for you which might include support groups, counselling services, buddy services among many others.

    T: +44 (0)8088 010 444
    WhatsApp:  +44 (0)7500068065
    Visit website

    Lymphoma Action

    Support available through phone or email, on-line support groups, buddy services and, after COVID-19 has resolved, in-person support groups.

    T: +44 (0)808 808 5555

    Visit website

    Macmillan Cancer Support

    A British charity that provides specialist healthcare, information and financial support to people affected by cancer.

    T: +44 (0)808 808 00 00
    Email and Chat: Available through website
    Visit website

    Maggie’s Centres

    A network of drop-in centres across the United Kingdom is there to help anyone who has been affected by cancer. They provide support, information and practical advice. They are located near, but are detached from, existing NHS hospitals.

    T: +44 (0)300 123 1801

    Visit website

  • General Information About Clinical Trials

    Additional information about participating in or supporting a loved one during a clinical trial is available at:

  • CAR T-cell Therapy Process Videos

    These short videos about the CAR T-cell therapy process explain exactly how the treatment works:

    CAR T-Cell Therapy: How Does It Work?Dana-Farber Cancer Institute

    The 8 Steps of CAR T-Cell TherapyDana-Farber Cancer Institute

    CAR T-Cell Therapy for Cancer Treatment: How It WorksMD Anderson Cancer Center

    CAR T-Cell TherapyThe Leukemia and Lymphoma Society (LLS)

    CAR T-Cell Therapy: Side EffectsThe Leukemia and Lymphoma Society (LLS)

    How to Biohack Your Cells to Treat Cancer (TedEd YouTube Video)The science of biohacking, where biologists go into a patient’s genetic code and reprogram their immune system to recognise and fight cancer cells.

  • Apps Providing Help Along the Journey

    Blue gradient square with the word Calm written in a white, cursive font in the center.

    Calm

    Calm is the #1 app for sleep and meditation. Join the millions experiencing better sleep, lower stress and less anxiety.

    Illustration of a stylized pink planet with smooth stripes against a purple background, featuring small dots resembling stars.

    Chillscape

    Sonic Meditation: A tool for quick bursts of mindfulness and anxiety relief. It can be used to relax, focus the mind or filter out unwanted distractions like pain or negative thoughts.

    An orange circle centered on a white square background with rounded corners.

    Headspace

    Loaded with meditation courses, sleep programmes and movement practices. This is an expensive option, but their free trial may be useful as an introduction to mindfulness practices.

    Illustration of a round copper bowl with a slightly flared lip and dotted texture near the bottom, set against a plain white background.

    Insight Timer

    A free library of 60,000 meditations, music selections and inspirational talks. Paid services, including meditation courses, are also available.

    A white face with a peaceful expression, including closed eyes and a slight smile, is centered on a blue, rounded square background. The design conveys a sense of calm and tranquility.

    MindShift CBT

    A free, scientifically based anxiety tool based on a type of therapy called Cognitive Behavioural Therapy (CBT). The interactive tool guides users to look at anxiety-producing thoughts in a healthier way.

    Abstract image with overlapping translucent blue shapes forming a central dark blue area on a light blue background. The shapes create a sense of depth and movement.

    Pause: Daily Mindfulness

    A variety of short sessions that help you relax and shift your focus away from distressing thoughts.

    Blue square icon with three overlapping white circles of increasing size from bottom to top, resembling a speech bubble. The background is a gradient from light to darker blue.

    Rebalance with Mindfulness

    A guided, 4 step process to combat stress by reconnecting the mind and body.

    1. Diaphragmatic breathing*: A type of breathing exercise that reduces the stress response and brings your nervous system back into balance.

    2. Mindful body scan: Emotions can appear as physical sensations. By developing an awareness of how your body feels, you can learn to regulate your emotions better.

    3. Labelling emotions and sensations: Labelling emotions reduces their intensity.

    4. Allowing: The practice of allowing our sensations and emotions to exist without trying to change them or react to them. The app helps you choose how to respond to your emotions.

    These apps are available on the App Store or Google Play: