Axicabtagene ciloleucel (Yescarta®)

Axicabtagene ciloleucel is a cancer drug made from your own white blood cells. It is a type of treatment called CAR T therapy. It is used to treat a type of blood cancer called lymphoma. It may sometimes be used to treat other cancers.

Axicabtagene ciloleucel is also called Yescarta^®. In this information we call it axicabtagene.

Your cancer team will talk to you about this treatment and the possible side effects before you agree (consent) to have treatment. They will explain when your axicabtagene will be ready. This treatment takes several weeks to make and involves the following steps:

• White blood cells are collected from your blood. This process is called leukapheresis. 
• The cells are sent to a laboratory that makes CAR T therapy.
• The cells are changed to help them recognise and attack cancer cells.
• More of the changed cells are grown to make your axicabtagene treatment.
• Your changed cells (called CAR T-cells) are sent back to the hospital where you will have the treatment.

CAR T therapies are carefully made under strict conditions. But sometimes the process does not succeed in making a treatment. If this happens, your cancer team will talk to you about your options.
It is best to read this information with our general information about CAR T therapy and the type of cancer you have.

While the CAR T therapy is being made, some people will need additional treatments to keep the cancer cells under control. This is called bridging and can involve cancer drugs or radiotherapy. Your cancer team will explain if you need bridging treatments. 

In the days just before you have axicabtagene treatment, you will have chemotherapy. This reduces the white blood cells in your body so axicabtagene can be effective. Your cancer team will explain the chemotherapy drugs you are having and give you separate information about this.

This information is correct at time of publishing. But sometimes the types of cancer this treatment is used for, or treatment side effects, may change between revision dates.

You can talk to your cancer team if you want more detailed information about this treatment. Or visit the electronic Medicines Compendium (eMC) website, which has patient information leaflets (PIL) for individual drugs.

We explain the most common side effects of this treatment here. We also include some that are less common. 

You may get some of the side effects we mention, but you are unlikely to get all of them. And you may have some side effects, including rarer ones, that we have not listed here. 

Other cancer treatments may cause different side effects. If you are also having other cancer treatment, you may have other side effects.

Always tell your doctor, nurse or pharmacist about any side effects you have. They can give you: 

• drugs to help control some side effects 
• advice about managing side effects. 

It is important to take any drugs exactly as explained. This means they will be more likely to work for you.

Some cancer treatments can cause serious side effects. Sometimes, these may be life-threatening. Your doctor, nurse or pharmacist can explain the risk of these side effects to you.

Your doctor, nurse or pharmacist will give you 24-hour contact numbers for the hospital. If you feel unwell or need advice, you can call at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

They will also give you a card with information about your treatment. It is important to keep the card with you during treatment and after treatment ends. You should show it to any doctor or healthcare professional caring for you.

As the CAR T-cells find and recognise the cancer cells, chemical messengers called cytokines are released. Cytokines help your immune system attack the cancer cells. But large amounts can make you feel unwell with flu-like symptoms. This is called cytokine release syndrome or CRS.

CRS usually happens within the first 10 days of treatment. But it can happen later. If you have any of the following symptoms after you go home, contact the hospital straight away on the 24-hour number:

• a high temperature
• a fast heart rate
• dizziness
• muscle or joint pain
• diarrhoea
• feeling sick or being sick
• difficulty breathing.

Most people will have mild CRS symptoms. But if CRS becomes more serious, you may need treatment and support to stop it getting worse. Some people will need treatment in intensive care for a time.

This treatment can cause temporary effects on the brain. This is called neurotoxicity or ICANS (immune effector cell-associated neurotoxicity syndrome).

For most people the side effects are mild. For example, you may notice changes in your handwriting. Or you may feel confused. But side effects can be more serious. You may need treatment and support to stop it getting worse. Some people will need treatment in intensive care until the symptoms improve.

ICANS side effects can happen in the first weeks after treatment, and usually within the first 4 to 8 weeks. They usually get better within 1 to 2 weeks.

You must not drive or use heavy machinery for at least 8 weeks after this treatment. If you have any of the following symptoms after you go home, contact the hospital straight away on the 24-hour number:

• difficulty speaking
• difficulty writing or doing fiddly tasks, such as fastening buttons or tying shoelaces 
• confusion
• reduced consciousness (being less alert)
• tremors or shaking
• loss of balance
• headaches
• seizures (fits).

This treatment affects your body’s ability to fight infection. This may be a long-term effect after treatment. You are more likely to get infections. You have a higher risk of serious illness from infection.

Your doctor may give you antibiotics and other drugs during and after this treatment to try and reduce your risk. But it is still important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C
• a temperature below 36°C
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

This treatment can affect your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

• Drink at least 2 litres (3½ pints) of fluids each day.
• Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
• Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital on the 24-hour number for advice. They can give you drugs called laxatives to help. 

If you have not been able to pass stools for over 2 days and are being sick, contact the 24-hour number straight away. 

This treatment may cause a rash, which may be itchy. Always tell your doctor, nurse or pharmacist about any skin changes. They can give you advice or prescribe creams or medicines to help.

If your skin feels dry, try using soap-free cleansers and unperfumed moisturising cream every day.

This treatment can affect how your kidneys or liver work. This is usually mild and goes back to normal after treatment ends. You will have blood tests to check how well your kidneys and liver are working. Contact the hospital on the 24-hour number if you:

• have blood in your urine (pee)
• are passing less urine or peeing less often than usual.

Drinking fluids also helps protect your kidneys. The advice is usually to try to drink at least 2 litres (3½ pints) of fluid each day. But follow any advice from your doctor, nurse or pharmacist about how much is right for you.

This treatment can cause a build-up of fluid in the body. This will slowly get better after treatment ends. Contact the hospital on the 24-hour number if you:

• are gaining weight 
• have swelling in your face, legs or ankles.

They can give you advice and treatment to help.

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• throbbing pain or swelling in a leg or arm
• reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
• suddenly feeling breathless or coughing.

Always call 999 if you have:

• chest pain
• difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

If you have had a liver infection called hepatitis B in the past, this treatment can make it active again. Your doctor or nurse will talk to you about this. They will test you for hepatitis B.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Show them your patient alert card. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist or optician, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.