Side effects of CAR T
What are the potential side effects of CAR T?
CAR T therapy, like all other medicines, has some side effects. Everyone’s experience is different – some people won’t experience these side effects, for some people they will be mild and for some people they may be severe.
CAR T therapy is given as an inpatient procedure in hospital, to manage some of the side effects of CAR T. Hospitals where CAR T is given are specially set up for patients receiving this type of treatment, and specialised healthcare teams are well trained to manage the side effects of CAR T therapy.1
Two of the common serious side effects of CAR T therapy are side effects associated with the brain, spinal cord and nerves (called neurological side effects) and something called cytokine release syndrome, or CRS. The healthcare team monitors patients closely to spot any of the symptoms associated with these.1,2
There are other side effects of CAR T therapy, as well as side effects associated with the chemotherapy and other medicine given in the lead up to the CAR T therapy.1
Frequently Asked Questions
CAR T therapy, like many other treatments, has some side effects. Everyone’s experience is different – for some people, they won’t experience these side effects, for some people they’ll be mild, and for some people they may be severe.1,3
CAR T therapy is only able to be given in certain hospitals where teams are experienced in managing some of the potential side effects of CAR T and specially set up for patients receiving this type of treatment. These highly trained teams are experts in managing the side effects of CAR T therapy.
Two of the most common side effects are neurological adverse reactions and cytokine release syndrome (CRS).
- Cytokine release syndrome (CRS):1,4 After CAR T therapy infusion, the immune system can become overactive and release a large number of cytokines, leading to an inflammatory response. This can cause low blood pressure, fever, light-headedness, dizziness, shortness of breath, rapid heartbeat, chills, fatigue, weakness and headache.
- Neurologic adverse reactions:1,3,4 After CAR T therapy infusion, a range of side effects can affect the brain or central nervous system. This can include confusion and disorientation, difficulty speaking and/or understanding speech, difficulty writing, short-term memory loss, tremors, agitation, increased sleepiness, fits, changes in level of consciousness and loss of balance or coordination.
As there are serious potential side effects, CAR T therapy can only be administered in certain hospitals where teams are experienced in managing the side effects and are specially set up for patients receiving this type of treatment. These highly trained teams are experts in managing the side effects of CAR T therapy.
After having CAR T therapy, if you are an outpatient, you must have a full-time carer with you at all times and stay within a 30-minute drive of the hospital, for a period of time specified by your treating doctor.4 A carer is needed to monitor for side effects, support you with day-to-day tasks and take you to follow-up appointments.
There are currently no CAR T therapies approved in Australia or elsewhere for the treatment of solid tumour cancers. There are, however, multiple clinical trials and research into CAR T in other forms of cancer, including solid tumours, along with neurological and inflammatory conditions.5
To be enrolled to receive CAR T therapy, you must have a designated carer who can support you through the treatment phase and monitor you for side effects once you are discharged from hospital. Your treating doctor will advise how long this monitoring period needs to continue. The nursing team at your CAR T treatment centre will provide further information about these requirements and offer resources to support you and your carer/s.
If you don’t live in the city/ town where the CAR T treatment centre is, you will need to travel to the centre for the apheresis (T cell removal) and then again for your CAR T cell therapy infusion. After the infusion, you will need to stay close to the treatment centre for a period of time specified by your treating doctor.4 The CAR T cell manufacturing companies do, however, provide funded travel and accommodation services if you live more than 100 km from the centre. State governments and charities such as the Leukaemia Foundation also provide funding and/or housing support. Contact Rare Cancers Australia or Leukaemia Foundation for more information on what may be available to you, or speak to the nursing team at the CAR T treatment centre.
There are several support groups or services you can also connect to:
Lymphoma Australia have several support groups and holds regular education sessions led by their network of lymphoma nurses from around Australia. They have additional information about CAR T on their website and also run a ‘CAR T Downunder’ closed Facebook group for people who have had or are having CAR T in Australia.
Lymphoma Australia
www.lymphoma.org.au
1800 953 081
Rare Cancers Australia provide travel and accommodation services for the CAR T manufacturers, along with running cancer support groups, including specific support groups for carers. They also run many advocacy and fundraising campaigns for people with rare, less common or complex cancers.
Rare Cancers Australia
www.rarecancers.org.au
1800 257 600
Leukaemia Foundation provides various services for people impacted by all blood cancers, including information and education, emotional support, financial support and travel and accommodation assistance.
Leukaemia Foundation
www.leukaemia.org.au
1800 620 420
Your state and territory Cancer Council can also provide support and assistance.
Cancer Council
www.cancer.org.au
13 11 20