Idelalisib (Zydelig®) is a targeted therapy drug. It is used to treat chronic lymphocytic leukaemia and follicular lymphoma.
Idelalisib (Zydelig®) is used to treat chronic lymphocytic leukaemia and follicular lymphoma. It may sometimes be used to treat other cancers. It is best to read this information with our general information about the type of cancer you have.
Idelalisib belongs to a group of targeted therapy drugs known as cancer growth inhibitors. It blocks the signals from proteins that make the leukaemia or cancer cells grow and divide. These proteins are called kinases. Blocking the signals from these proteins can cause cancer cells to stop growing or die.
Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.
Idelalisib comes as tablets which you can take at home.
Idelalisib can be given on its own, or in combination with other targeted therapy drugs such as rituximab or ofatumumab.
During treatment you usually see a cancer doctor, a cancer nurse or specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.
You will have regular blood tests during treatment to check your blood cells are at a safe level and to see how well your liver is working.
You will see a doctor or nurse before you have treatment. They will ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your targeted therapy. Your nurse will tell you when your treatment is likely to be ready.
Your course of treatment
The nurse or pharmacist will give you the tablets to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for you. You may be given tablets of different strengths.
Your nurse or pharmacist may also give you anti-sickness drugs and other medicines to take home. Take all your capsules or tablets exactly as they have been explained to you.
You usually take idelalisib for as long as it is still working and the side effects are not causing too many problems.
Taking idelalisib tablets
You usually take idelalisib twice a day. They must be swallowed whole with a glass of water. They should not be chewed, opened or crushed. Take them at the same time every day.
If you forget to take the tablets, you should take the missed dose as soon as possible within 6 hours. If 6 hours has gone by, let your doctor or nurse know. Do not take a double dose unless your doctor tells you to.
Other things to remember about your tablets:
- Wash your hands after taking your tablets.
- Other people should avoid direct contact with the drugs.
- Keep them in the original package and at room temperature, away from heat and direct sunlight.
- Keep them safe and out of sight and reach of children.
- If you are sick just after taking the tablets, contact the hospital. Do not take another dose.
- If your treatment is stopped return any unused tablets to the pharmacist.
We explain the most common side effects of this treatment here. We also include some less common side effects.
You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.
Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.
Serious and life-threatening side effects
Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.
We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.
Risk of infection
This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is sometimes called neutropenia.
An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. Contact the hospital straight away on the 24-hour contact number you have been given if:
- your temperature goes over 37.5°C (99.5°F)
- you suddenly feel unwell, even with a normal temperature
- you have symptoms of an infection
- your temperature goes below 36°C (96.8°F).
Symptoms of an infection include:
- feeling shivery and shaking
- a sore throat
- a cough
- needing to pass urine (pee) a lot, or discomfort when you pass urine.
It is important to follow any specific advice your cancer treatment team gives you.
The number of white blood cells will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.
Idelalisib can increase the risk of getting a chest infection (pneumonia). To reduce this risk, you will be given antibiotics to take during your treatment and for a few months after treatment has finished. Contact your doctor straightaway if you have any of the following symptoms:
- a cough
- coughing up mucus (phlegm)
- a fever, with a temperature over 37.5°C (99.5°F).
The nurses will give you anti-sickness drugs regularly to help prevent or control sickness during your treatment. If you feel sick or are sick (vomit), tell your nurse or doctor. They may change the anti-sickness drug to one that works better for you.
Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy.
If you feel sleepy, do not drive or use machinery.
This treatment may cause diarrhoea or bowel inflammation (colitis). Your nurse or doctor may give you anti-diarrhoea drugs to take at home. More serious diarrhoea or colitis can sometimes happen months after treatment has started and may lead to treatment being stopped.
If you have diarrhoea:
- follow any advice you have been given about taking anti-diarrhoea drugs
- drink at least 2 litres (3½ pints) of fluids each day
- avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.
Contact the hospital straight away if:
- you have diarrhoea at night
- you have diarrhoea more than 4 times in a day
- the anti-diarrhoea drugs do not work within 24 hours.
Some people may need to go to hospital to have fluids through a drip. You may also need to take drugs called steroids.
Pain in the tummy (abdomen)
You may get pain or discomfort in your tummy. Your doctor can prescribe drugs to help. Tell them if the pain does not improve, or gets worse.
Very rarely, idelalisib can cause a hole (perforation) in the bowel. Tell your doctor immediately if you:
- have severe pain in your tummy
- feel sick or are vomiting
- have a high temperature or feel cold and shaky (chills).
This treatment may cause skin changes, including:
- a rash
- patches of white or paler skin.
If you are out in the sun, use a sun cream with a high sun protection factor (at least SPF 30) to protect your skin. Always tell your doctor or nurse straight away if you notice any skin changes during treatment or after it finishes. You may need creams, steroids or other medicines. Your doctor may stop your treatment until the skin changes improve.
Rarely, a much more serious skin condition can develop. You may have a skin rash which then blisters, and your skin can peel. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, contact your doctor or hospital immediately.
Effects on the liver
This treatment can affect how your liver works. You will have regular blood tests to check this. Your doctor may give you steroids if the blood tests show liver changes.
Sometimes liver changes can be serious. Contact the hospital straight away if you have any of these symptoms during treatment or after it finishes:
- yellow skin or eyes
- feeling very sleepy
- dark urine (pee)
- unexplained bleeding or bruising
- loss of appetite.
You may need steroids or other treatments, and may be monitored until your liver recovers.
Increased cholesterol levels
The drug can increase the cholesterol level in your blood. Your doctor will monitor this with blood tests.
Effects on the lungs
This treatment can cause changes to the lungs. Tell your doctor if you develop:
- a cough
You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.
Effects on the nervous system
Rarely, this treatment can affect the nervous system. It can cause a condition called PML (progressive multifocal leukoencephalopathy). Symptoms of this include:
- difficulty speaking
- difficulty walking
- memory loss
- changes in your eyesight.
Contact the hospital straight away if you have any of these symptoms. Or if someone with you notices you have these symptoms.
It is important not to drive or operate machinery if you notice these effects.
CMV is a very common virus that many people have. It does not usually cause any problems or symptoms. Most people don’t know they have it. The body’s immune system usually controls it so that it is inactive (dormant). Once you have the virus in your body it stays there for life.
If you have CMV, treatment with idelalisib may make the virus active again. You will have regular blood tests to check for this. If CMV does becomes active you will be given treatment for this straightaway, usually with tablets.
Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:
- medicines you have been prescribed
- medicines you buy in a shop or chemist
- vitamins, herbal drugs and complementary therapies.
Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.
You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.
Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.
Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.
If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines, such as shingles, contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.
Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment. The drugs may harm a developing baby. It is important to use contraception during your treatment and for a while after treatment finishes. Your doctor, nurse or pharmacist can tell you more about this.
You are advised not to breastfeed while having this treatment, or for some time after treatment finishes. This is because the drugs could be passed to the baby through breast milk.
Your doctor or nurse can give you more information.
Medical and dental treatment
If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.
If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.
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