Alpelisib (Piqray®)

Alpelisib is given as tablets, so you can take them at home. 

You take alpelisib with the hormonal drug fulvestrant. The information given here is about alpelisib. We have more information about fulvestrant including side effects. 

During treatment, you usually see a:

• cancer doctor
• cancer nurse or specialist nurse
• specialist pharmacist. 

This is who we mean when we mention doctor, nurse or pharmacist in this information.

You have your blood checked regularly during treatment. Your doctor or nurse will tell you when your blood will be checked. A nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that your blood sugar and blood cells are at a safe level to have treatment. 

You take alpelisib for as long as it is working for you and any side effects can be managed.

You take it once a day and at the same time every day. Take it straight after you have eaten food.

Swallow the tablets whole with a large glass of water. Do not break, crush or dissolve tablets. If you find it difficult to swallow your tablets, speak to your doctor or pharmacist.

Always take alpelisib exactly as your nurse or pharmacist explains. This is important to make sure the treatment works as well as possible for you.

Never take a double dose of alpelisib. If you forget to take your tablets, take them when you remember as long as it is within 9 hours of when you usually take the tablets. If it is over 9 hours then wait and take the next dose at the usual time for you.

Other things to remember about your tablets:

• Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
• Keep them safe, somewhere children cannot see or reach them
• 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.

This treatment may raise your blood sugar levels. You will have regular blood tests to check this. You may be asked to check your blood glucose levels at home. A nurse will show you how to do this.

Symptoms of raised blood sugar include:

• feeling thirsty
• needing to pass urine (pee) more often
• feeling tired
• increased appetite with weight loss

Tell your doctor or nurse if you have these symptoms during treatment or after it finishes. You may need to take medication to help control your blood sugar levels.

You may be asked to stop taking alpelisib until your blood sugar levels are under control.

If you have diabetes, your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this.

This treatment may affect your skin. It may cause a rash, which might be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

Always tell your doctor or nurse about any changes to your skin. They can give you advice and may prescribe creams or medicines to help. Skin changes usually improve when treatment finishes.
Rarely, a much more serious skin condition can develop. You may have:

• a skin rash which then blisters
• peeling skin 
• flu-like symptoms, such as a high temperature and joint pain.

If you have any of these symptoms, contact your doctor or hospital straight away.

Some people have an allergic reaction while having this treatment. Signs of a reaction can include: 

• a skin rash
• itching
• feeling dizzy
• feeling breathless or wheezy
• swelling of your face or throat
• your lips, tongue or skin has a blue colour. 

If you feel unwell or have any of these signs, tell a doctor or nurse straight away. Do not take any more of this treatment until you have spoken to them.

This treatment often causes diarrhoea. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.

Sometimes diarrhoea can be severe. If you have diarrhoea:

• always contact your doctor or nurse and ask for advice
• start taking anti-diarrhoea drugs if your doctor, nurse or pharmacist gave you a supply
• 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
• you have a moderate or severe increase in stoma activity
• the anti-diarrhoea drugs do not improve the diarrhoea within 24 hours.

If you think that some foods are making your diarrhoea worse, tell your doctor or nurse. They can give you advice and may arrange for you to talk to a dietician. 

If you feel sick, or if you are sick (vomit), contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may give you an anti-sickness drug to try. 

If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids.

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 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 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.

Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. You may also get a bitter or metallic taste in your mouth. Your doctor, nurse or pharmacist can give you advice. It might help to try:

• sucking sugar-free sour or boiled sweets
• eating cold foods
• eating sharp-tasting fresh fruit.

Taste changes usually get better after treatment ends. We have more information about coping with changes to taste.

This treatment may cause headaches. If you have headaches, tell your doctor, nurse or pharmacist. They can give you advice about painkillers that may help. Tell them if the headache does not get better, or gets worse.

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth or throat is sore:

• tell your nurse or doctor – they can give you a mouthwash or medicines to help
• try to drink plenty of fluids
• avoid alcohol, tobacco, and foods that irritate your mouth and throat.

Your hair may get thinner or you may lose all the hair from your head. You may also lose your eyelashes and eyebrows, as well as other body hair. Your nurse can talk to you about ways to cope with hair loss. There are ways to cover up hair loss if you want to.

Your scalp may be sensitive. It is important to cover your head to protect your skin when you are out in the sun. 

Feeling tired is a common side effect. Try to pace yourself and plan your day so you have time to rest between activities.

Being physically active can help to manage tiredness and give you more energy. It also:

• helps you sleep better
• reduces stress
• improves your bone health.

If you feel sleepy, do not drive or operate machinery.

This treatment may affect how your liver works. This is usually mild. You will have blood tests to check how well your liver is working.

This treatment can affect how your kidneys work. This is usually mild. You will have blood tests to check how well your kidneys are working. Tell your doctor or nurse if you have blood in your urine (pee) or you are passing urine less than usual.

It is important to drink at least 2 litres (3½ pints) of non-alcoholic fluid each day to help protect your kidneys. 

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.

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.

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.

It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex during this treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.

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 a barrier contraception such as a condom, 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 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.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. 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, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.