Lenalidomide (Revlimid®)

Lenalidomide is used to treat myeloma, some types of lymphoma and myelodysplastic syndromes (MDS).

Lenalidomide is both a targeted therapy drug and an immunotherapy drug. It works in several different ways.

Lenalidomide can:

• block the development of new blood vessels that cancer cells need to grow and spread – this is what angiogenesis inhibitors do
• kill or stop the growth of cancer cells – this is what cancer growth inhibitors do
• help the immune system attack and destroy cancer cells – this is what immune system modulators do.

It is best to read this information with our general information about targeted therapy drugs and the type of cancer you have.

Your cancer team will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.

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.

You must not become pregnant or make someone pregnant while taking lenalidomide. This is because it may cause severe abnormalities in developing babies. You will take part in a Pregnancy Prevention Programme during treatment.

Your doctor or specialist nurse will give you information about the risks of lenalidomide and pregnancy. They will ask you to sign a consent form once you have read the information.

If you are able to get pregnant, you will have a pregnancy test before starting treatment with lenalidomide. The pregnancy test will be repeated:

• every 4 weeks during treatment
• for 4 weeks after treatment finishes.

You must also use an effective form of contraception, such as:

• an implant
• injection
• the progesterone-only pill.

The combined oral contraceptive pill is not recommended because it increases your risk of developing blood clots. You must use contraception:

• for 4 weeks before treatment
• during treatment
• for 4 weeks after treatment finishes.

If you think you may be pregnant at any time during your treatment, contact your doctor or specialist nurse straight away.

If your partner is able to get pregnant, you must use a condom during sex:

• while taking lenalidomide
• for at least 1 week after treatment finishes.

This is because lenalidomide can pass into your semen and can be harmful to developing babies.

If your partner thinks they might be pregnant during your treatment, contact your doctor or specialist nurse straight away.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is 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. 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.

Your white blood cell count 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.

You may be given a drug called G-CSF. This encourages the body to make more white blood cells. You have it as a small injection under the skin.

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

This treatment can also:

• cause a rash, which may be itchy
• make your skin darker in some areas
• make you more sensitive to the sun.

Your skin may burn more easily during treatment and for several months after. Use a sun cream of at least SPF 30. SPF stands for sun protection factor. Cover up with clothing and wear a hat.

Always tell your doctor, nurse or pharmacist about any skin changes. They can give you advice or prescribe creams or medicines to help. Changes to your skin are usually temporary and improve when treatment ends.

This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. You may also have stomach cramps. If you have a stoma, it may be more active than usual. 

If you are passing loose stools 3 or more times a day and this is not normal for you, contact the hospital as soon as possible on the 24-hour number. Follow the advice they give you about:

• taking anti-diarrhoea medicines 
• drinking enough fluids to keep you hydrated and to replace lost salts and minerals
• any changes to your diet that might help. 

They might also ask you for a specimen of your stool to check for infection.

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.

Contact the hospital straight away on the 24-hour number, if:

• a sore mouth or throat affects how much you can drink or eat 
• your mouth, tongue, throat or lips have any blisters, ulcers or white patches. 

They can give you advice, and mouthwash or medicines to help with the pain or to treat any infection. Follow their advice and make sure you:

• drink plenty of fluids
• avoid alcohol and tobacco
• avoid food or drinks that irritate your mouth and throat.

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. 

It is not common to feel sick with this treatment. But your doctor, nurse or pharmacist may prescribe you anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to. If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. 

If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice.

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.

We have more information about coping with changes to taste.

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.

You may get pain in your tummy (abdomen), or have indigestion. Your doctor, nurse or pharmacist can give you advice or treatment to help. Contact the hospital straight away on the 24-hour number if your symptoms do not go away, or get worse.

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 ends. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired. 

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

You may have mood swings, feeling happy one minute and sad the next. Some people while taking this treatment can become low in mood or depressed. You may also have difficulty sleeping or your sleep pattern may be affected. Talk to your doctor or specialist nurse if you notice this.

You may get pain in your muscles or joints for a few days after treatment. You may notice pain where the cancer is. If this happens, tell your doctor, nurse or pharmacist. They can give you painkillers and advice. They can also tell you if any of the painkillers you usually take are suitable. Having warm baths and resting regularly may help.

Tell your doctor, nurse or pharmacist if the pain does not get better.

This treatment affects the nerves, which can cause numb, tingling or painful hands or feet. You may find it hard to fasten buttons or do other fiddly tasks.

Tell your doctor if you have these symptoms. They sometimes need to lower the dose of the drug.

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.

Tell your doctor or nurse if you have blurry vision during treatment, or if your eyesight changes.

This treatment may cause changes in your blood sugar levels and increase the risk of diabetes. You will have regular blood tests to check this.

Signs of raised blood sugar include:

• feeling thirsty
• needing to pass urine (pee) more often than usual
• feeling more tired than usual.

Contact the hospital on the 24-hour number if you have these symptoms during treatment or after it ends.

If you already have diabetes, your blood sugar levels may be higher than usual. You may need to check your blood sugar levels more often than usual. You may need advice and support from your GP or diabetes team about managing this.

This treatment can affect how the kidneys work. This is usually mild and goes back to normal after treatment ends. You will have blood tests to check how well your kidneys 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 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 affect how the liver works. You will have regular blood tests to check this. Sometimes liver changes can be serious. Contact the hospital straight away on the 24-hour number if you have any of these symptoms:

• yellow skin or eyes
• feeling very sleepy
• dark urine (pee)
• unexplained bleeding or bruising
• pain in the right side of your tummy (abdomen).

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 viral infections can become active again while you are taking this treatment. These may need treatment with anti-viral drugs. This includes hepatitis B (a liver infection) and herpes zoster (shingles). Your doctor or nurse will talk to you about this. Before you start treatment you will have a blood test to check if you have had hepatitis B.

This treatment can increase the risk of developing a second cancer years later. This is rare. The benefits of treatment usually far outweigh this risk. Your doctor, nurse or pharmacist can talk to you about this.

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.

You must not give blood during treatment or for 1 week after this treatment.

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. We have more information about preventing pregnancy while on lenalidomide.

Follow the advice of your doctor, nurse or pharmacist 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. 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.