CAR-T cell therapy for myeloma
On this page, you’ll find everything you need to know about CAR-T cell therapy (CAR-T) for myeloma including what it is, possible side effects and real lived experiences of having CAR-T.
Introduction
CAR-T is a newer type of treatment for people living with myeloma. It uses the body’s own immune system to help find and destroy myeloma cells. It has shown encouraging results during clinical trials for some people whose myeloma has come back or stopped responding to other treatments.
This guide explains what CAR-T is, how it works, who it may be suitable for, possible side effects, and what to expect during treatment.
Your healthcare team are best placed to advise on available treatments suitable for you. You can also contact our Myeloma Information Specialists for advice or support on 0800 980 3332 (UK) or by using the Ask the Nurse email service.
CAR-T at a glance
- CAR-T stands for Chimeric Antigen Receptor T cell therapy.
- It is a type of immunotherapy.
- The treatment uses a patient’s own T cells, a type of white blood cell.
- These T cells are collected from the blood and changed in a laboratory so that they can recognise and attack myeloma cells.
- The modified cells are then returned to the patient through an infusion.
- Whilst CAR-T is not currently considered a cure, many people living with myeloma, treated through clinical trials, experience long remissions.
- CAR-T is usually considered for people whose myeloma has relapsed or become resistant to treatment, although there are ongoing trials exploring CAR-T for newly diagnosed patients too.
What is CAR-T?
CAR-T works by helping the immune system recognise myeloma cells more effectively.
T cells are part of the immune system and normally help protect the body from infection and disease. In CAR-T, some of these T cells are collected from the blood and genetically modified in a laboratory so that they have special receptors, called chimeric antigen receptors (CAR). This allows them to identify specific proteins found on myeloma cells.
Once modified, they are infused back into your body where they can seek out and attack myeloma cells.
Unlike treatments that need to be given regularly over months or years, CAR-T is usually given as a one-off treatment, although patients continue to be monitored closely afterwards.
Why CAR-T is different from other myeloma treatments
Most standard myeloma treatments work by directly killing myeloma cells or slowing their growth. CAR-T works differently because it trains the immune system to recognise and attack the cancer itself.
Some key differences include:
- Personalised treatment – the therapy is made using the patient’s own immune cells.
- Targeted approach – CAR-T cells are designed to recognise proteins found on myeloma cells.
- Potential for long remissions and long periods off treatment – some people respond very well to treatment.
- One-time treatment process – unlike ongoing cycles of treatment, CAR-T is generally given once.
However, CAR-T is not currently considered a cure for myeloma, and not everyone will respond in the same way.
The CAR-T treatment journey
The CAR-T process usually involves several stages over a number of weeks.
Assessment and testing
Before treatment begins, patients will have tests to check whether CAR-T is suitable for them. This may include blood tests, scans, and heart or lung assessments. If CAR-T is not suitable, your healthcare team will work with you to find the most suitable treatment option.
Collecting T cells
T cells are collected from the blood using a process called leukapheresis. Blood is taken through a machine that separates out the T cells before the remaining blood is returned to your body.
Manufacturing the CAR-T cells
The T cells are sent to a specialist laboratory where they are genetically modified and multiplied. This process can take several weeks.
Bridging treatment
Some patients may need additional treatment while waiting for their CAR-T cells to be prepared. This helps to keep the myeloma under control and is known as bridging treatment.
Chemotherapy before infusion
Shortly before the CAR-T infusion, patients usually receive low-dose chemotherapy. This helps prepare the immune system for the CAR-T cells.
CAR-T infusion
The CAR-T cells are given back into the bloodstream through a drip (intravenously).
Monitoring and recovery
Patients are monitored carefully afterwards because side effects can develop quickly, especially during the first few weeks after treatment. Some people need to stay in hospital during this time. Your healthcare team will talk to you about the most suitable care for you, before starting treatment.
Side effects of CAR-T
CAR-T can cause significant side effects, although not everyone experiences them in the same way. Patients are closely monitored during and after receiving treatment to help spot and manage side effects quickly.
Cytokine release syndrome (CRS)
CRS is one of the most common side effects. It happens when the immune system becomes highly activated. Symptoms can include fever, low blood pressure, chills, breathing difficulties, and a fast heartbeat.
Neurological side effects
Some people may experience confusion, headaches, difficulty speaking, drowsiness, or tremors. These side effects are caused by immune effector cell-associated neurotoxicity syndrome (ICANS) and are usually temporary but require careful monitoring.
Increased risk of infection
CAR-T can reduce the number of healthy blood cells and weaken the immune system, increasing the risk of infection.
Fatigue and low blood counts
Tiredness, anaemia, bruising, and bleeding can also occur after treatment.
Patients are monitored closely so side effects can be treated quickly if they develop.
CAR-T on the NHS
While there are some CAR-T cell therapies licensed for use in the UK, CAR-T for myeloma is not currently available for use on the NHS.
There are currently two CAR-T cell therapies scheduled to go through the National Institute of Health and Care Excellence (NICE) appraisal process for use in England and Wales. Myeloma UK will play a vital part in bringing forward evidence and ensuring patient voice is heard during this process. We will be working hard to ensure people can access these treatments.
We hope the Scottish Medicines Consortium (SMC) will also look at the appraisal of CAR-T in due course. In Northern Ireland, the Department of Health can follow guidance issued by either NICE or SMC to make their decisions on which treatments to fund.
Some patients may also be offered CAR-T through a clinical trial. Our Myeloma Trial Finder has information on clinical trials currently investigating CAR-T for myeloma.
CAR-T is only given at specialist centres with expertise in delivering this treatment and managing side effects. Patients may need to travel to a designated treatment centre.
What is Myeloma UK doing to ensure access to CAR-T?
Myeloma UK have been involved in every treatment appraisal since we began back in 1997. We are already making the case for CAR-T to be approved. At Myeloma UK we believe that lived experience should be at the heart of every decision on treatments. We will always make sure the voices of people living with myeloma are heard at every opportunity in the appraisal process.
The appraisal process can take a long time; on average it can take 18 months for a treatment to be approved for use on the NHS once it enters the NICE appraisal process. At each stage, Myeloma UK will be bringing forward evidence, meeting with clinicians, industry partners and decision makers, and of course ensuring that the voice of people living with myeloma is heard.
Myeloma UK have been calling for CAR-T to be available on the NHS for years. We believe that everyone should be able to access the treatments they need to keep their cancer at bay regardless of where they live or their ability to pay. We will also be meeting with politicians and policymakers to highlight why it’s so important that new innovative treatments like CAR-T are approved for myeloma.
Me and CAR-T
Read about real life experiences with CAR-T
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