What is lenalidomide (Revlimid®)?

Lenalidomide (Revlimid®) is used to treat myeloma, mantle cell lymphoma and myelodysplastic syndromes (MDS). You may have lenalidomide with a steroid such as dexamethasone or with chemotherapy. It is best to read this information with our general information about the type of cancer you have.

Lenalidomide works in several different ways and belongs to several different groups of targeted therapy drugs. It is an angiogenesis inhibitor, a cancer growth inhibitor and an immune system modulator. Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.

How lenalidomide is given

Lenalidomide is given as capsules. This means you can take it at home. It may be given on its own, or with steroids or chemotherapy.

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.

Your course of treatment

You usually take lenalidomide once a day for 3 weeks. At the end of the 3 weeks, you have no treatment for 1 week. Together, this is called a cycle of treatment. At the end of a cycle, you start the next cycle of treatment.

Taking lenalidomide capsules

Lenalidomide capsules come in different strengths. Your doctor, nurse or pharmacist will tell you how many of each to take. Always take them exactly as you are told to. This is important to make sure they work as well as possible for you.

Take the capsules at about the same time each day. Swallow them whole with a glass of water. You can take them with or without food. The capsules should not be chewed or opened.

There are some important things to remember when taking your capsules:

  • If you forget to take the capsules, take them as soon as you realise. But if it is less than 12 hours until the next dose, do not take the missed capsules. You should never take a double dose.
  • If you are sick just after taking the capsules, tell your doctor. You may need to take another dose. But do not take another dose without telling your doctor first.
  • Keep them in the original package and at room temperature, away from heat and direct sunlight.
  • Remove the capsules carefully from the packaging.
  • Keep them safe and out of sight and reach of children.
  • If your treatment is stopped, return any unused capsules to the pharmacist.

Preventing pregnancy while taking lenalidomide

You must not become pregnant or father a child 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.

 

For women taking lenalidomide

Women of childbearing age will have a pregnancy test before starting treatment with lenalidomide. The pregnancy test will be repeated every 4 weeks during treatment and for 4 weeks after treatment finishes.

You must also use an effective form of contraception, such as an implant, injection or 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, and 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.

 

For men taking lenalidomide

You must use a condom during sex while taking lenalidomide and for a week after treatment finishes. This is to protect your partner, because lenalidomide can pass into your semen.

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

About side effects

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.

More information

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.

Possible side effects

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 called neutropenia.

If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have 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.

Symptoms of an infection include:

  • feeling shivery
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine often.

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.

G-CSF (granulocyte-colony stimulating factor) is a type of drug called a growth factor. It encourages the body to make more white blood cells.

Your doctor may give you G-CSF:

  • if the number of white blood cells is very low
  • to stop the number of white blood cells getting low.

You have it as a small injection under the skin.

Bruising and bleeding

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

Tell your doctor if you have any bruising or bleeding that you cannot explain. This includes:

  • nosebleeds
  • bleeding gums
  • tiny red or purple spots on the skin that may look like a rash.

Some people may need a drip to give them extra platelets. This is called a platelet transfusion.

Anaemia (low number of red blood cells)

This treatment can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Skin changes

Your skin may become red, dry or itchy. Tell your doctor or nurse if you have any of these symptoms. They can prescribe creams and drugs to help.

Rarely, a much more serious skin condition can occur. You may have a skin rash which spreads and becomes severe. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, you must contact a doctor immediately.

Diarrhoea

This treatment may cause 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.

If you have diarrhoea:

  • try to drink at least 2 litres (31/2 pints) of fluids each day
  • avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
  • contact the hospital for advice.

Sore mouth

You may get a sore mouth or mouth ulcers. This can make you more likely to get a mouth infection.

Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth 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.

Constipation

This treatment can cause constipation. 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 for advice. Your doctor can give you drugs called laxatives to help.

Feeling sick

This is usually mild. Your doctor can prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. If you still feel sick, tell your doctor as they can prescribe different anti-sickness drugs that may work better for you.

Changes to your taste

You may get a bitter or metal taste in your mouth. Sucking sugar-free sweets may help with this. Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. Taste changes usually get better after treatment finishes. Your nurse can give you more advice.

Loss of appetite

This treatment can affect your appetite. Do not worry if you do not eat much for a day or two. But if your appetite does not come back after a few days, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.

Tummy pain

You may get pain or discomfort in your tummy (abdomen), or have indigestion or wind. Your doctor can prescribe drugs to help improve these symptoms. Tell them if the pain does not improve or gets worse.

Feeling tired

Feeling tired is a common side effect. 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 operate machinery.

Mood changes and sleep problems

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.

 

Muscle and joint pain

You may get pain in your muscles or joints. You may also have muscle spasms or cramps. If this happens, tell your doctor so they can give you give you painkillers. Tell them if the pain does not get better.

Numb or tingling hands or feet (peripheral neuropathy)

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. The symptoms usually improve slowly after treatment finishes, but for some people they may never go away. Talk to your doctor if you are worried about this.

Effects on the heart

Chemotherapy can affect the way the heart works. You may have tests to see how well your heart is working. These may be done before, during and sometimes after treatment. If the treatment is causing heart problems, your doctor can change the type of chemotherapy you are having.

Contact a doctor straight away if you:

  • have pain or tightness in your chest
  • feel breathless or dizzy
  • feel your heart is beating too fast or too slowly.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor.

Changes to your blood pressure

This treatment may cause low or high blood pressure. Tell your doctor or nurse if you have ever had any problems with your blood pressure. Your nurse will check your blood pressure regularly during treatment. Let them know if you feel dizzy or have any headaches.

Build-up of fluid

Your ankles and legs may swell because of fluid building up. Tell your doctor or nurse if this happens. They may give you medicines that can help. If the swelling is uncomfortable, they may also give you support stockings. It can also help to put your legs up on a foot stool or cushion. The swelling will usually get better when treatment finishes.

Eye problems

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

Raised blood sugar levels

This treatment may raise your blood sugar levels. Symptoms of raised blood sugar include:

  • feeling thirsty
  • needing to pass urine more often
  • feeling tired.

Tell your doctor or nurse if you have these symptoms.

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

Changes in hearing

This treatment can affect your hearing. You may get ringing in your ears (tinnitus). Tinnitus usually gets better after treatment ends. Tell your doctor if you notice any changes in your hearing.

Effects on the kidneys and liver

This treatment can affect how your kidneys or liver work. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your kidneys and liver are working.

Contact your doctor straight away if you:

  • find it difficult to pass urine
  • are passing urine more, or less, often
  • have dark urine or blood in your urine
  • develop yellow skin or eyes
  • have unexplained bleeding or bruising.

Difficulty getting an erection

You may have difficulty getting or keeping an erection while on this treatment.

Other information

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

  • pain, redness or swelling in a leg or arm
  • breathlessness
  • chest pain.

If you have any of these symptoms, contact a doctor straight away.

A blood clot is serious, but can be treated with drugs that thin the blood. Your doctor or nurse can give you more information.

Hepatitis B and shingles

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.

Second cancer

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 can talk to you about this.

Driving

Do not drive if you have dizziness or blurred vision, or if you feel tired or sleepy. Talk to your doctor if you are not sure whether it is safe for you to drive.

Other medicines

Some medicines can affect this treatment or be harmful when you are having it. This includes medicines you can buy in a shop or chemist. Tell your cancer doctor about any drugs you are taking, including vitamins, herbal drugs and complementary therapies.

Fertility

You must not become pregnant or father a child while taking this treatment (see ‘Preventing pregnancy’ above). Doctors do not yet know how this treatment may affect fertility in men and women after treatment. If you are worried about this, talk to your doctor before starting your treatment. 

Breastfeeding

Women are advised not to breastfeed while having this treatment. This is because the drugs could be passed to the baby through breast milk.

Lactose

This drug contains lactose. If you have a lactose intolerance, talk to your doctor before you start taking this treatment.

Donating blood

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

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses that 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.

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