Lenalidomide (Revlimid®)

Lenalidomide is a targeted therapy drug which is used to treat myeloma, mantle cell lymphoma and myelodysplastic syndromes (MDS). It is best to read this information with our general information about the type of cancer you have.

Lenalidomide is usually given as capsules, which you take as an outpatient. Your cancer doctor or nurse will tell you how often you will have it.

Like all targeted therapy drugs, lenalidomide can cause side effects. Some of the side effects can be serious, so it’s important to read the detailed information below. Your healthcare team can talk to you more about this and give you advice on how to manage any side effects.

Tell your doctor or nurse straight away if you:

  • have a temperature
  • feel unwell
  • have severe side effects, including any we do not mention here. 

Rarely, side effects may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.

If you need medical attention for any reason, always tell the healthcare staff that you are having this treatment.

What is lenalidomide?

Lenalidomide is a targeted therapy drug used to treat myeloma, mantle cell lymphoma and myelodysplastic syndromes (MDS). You may have lenalidomide with a steroid called dexamethasone or with a chemotherapy drug.

It is best to read this information with our general information about the type of cancer you have. During treatment, you will see a cancer doctor or nurse. This is who we mean when we mention a doctor or nurse in this information.

How targeted therapies work

This animation shows how targeted therapies work and what effect they have on the body.

About our cancer information videos

How targeted therapies work

This animation shows how targeted therapies work and what effect they have on the body.

About our cancer information videos


How lenalidomide works

Lenalidomide works in several different ways. It can:

  • help the immune system attack and destroy cancer cells
  • kill or stop the growth of cancer cells
  • affect the chemical messages that cancer cells need to survive
  • block the development of new blood vessels which cancer cells need to grow and spread.


Taking lenalidomide

You have lenalidomide as capsules which you take at home. The capsules come in four strengths. Your doctor, nurse or pharmacist will tell you how many of each to take. Always take lenalidomide exactly as explained. This is 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.

You usually take lenalidomide once a day for three weeks. When you have finished taking the capsules, you have no treatment for a week. The three weeks and the break is called a cycle of treatment. After this, you start your next cycle of treatment.

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

  • If you forget to take a dose, take it 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 as you may need to take another dose. Do not take another dose without telling your doctor first.
  • Keep the tablets in the original packaging.
  • Store them at room temperature (not over 30°C) and away from heat.
  • Remove the capsules carefully from the packaging.
  • Keep the tablets in a safe place, out of the reach of children.
  • If your treatment is stopped, return any remaining tablets to the pharmacist. Do not flush them down the toilet or throw them away.


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 four weeks during treatment and for four weeks after treatment finishes.

You must also use an effective form of contraception, such as an implant or 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 four weeks before treatment, during treatment and for four 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 from lenalidomide which can pass into your semen.

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


Possible side effects of lenalidomide

We have included the most common side effects of lenalidomide. We have also included some less common and rarer side effects. You may get some of the side effects we mention here, but you will not get them all.

If you are also taking other anti-cancer drugs, some side effects may be worse. You may also have side effects not listed here.

Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained.

Your nurse will give you advice about managing side effects. After your treatment is over, the side effects will start to improve. Always tell your doctor or nurse about the side effects you have.

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.

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.

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.

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 which help the blood to clot. Tell your doctor if you have any bruising or bleeding that you can’t explain. This includes nose bleeds, bleeding gums, blood spots or rashes on the skin. If your platelet count is very low, you may need a drip to give you extra platelets (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 dry and itchy. You may also notice a rash or redness. Tell your doctor or nurse if you have any of these symptoms. They can prescribe creams and drugs to help.

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.

Diarrhoea

You may have frequent or loose bowel movements. This can usually be easily controlled by taking anti-diarrhoea drugs. Your doctor can prescribe these for you. You should tell your doctor if your diarrhoea is severe or if it continues. It is important to drink plenty of fluids if you have diarrhoea, around 2 litres (4 pints) a day.

Feeling sick

This is usually mild, but your doctor can prescribe anti-sickness drugs to help. Tell your doctor if it does not get better.

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), feel bloated or have indigestion or wind. Your doctor can prescribe drugs to help improve these symptoms. Tell them if the pain doesn’t improve, or if it gets worse.

Feeling tired

Feeling tired is a common side effect. 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.

Sleep disturbance

You may have difficulty sleeping or your sleep pattern may be affected. Talk to your doctor or specialist nurse if you notice this.

Muscle or joint pain

You may get pain in your muscles or joints for a few days after chemotherapy. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better. Having warm baths and taking regular rests may help.

Numb or tingling hands or feet

Lenalidomide can affect your nerves and you may notice numbness or tingling in your hands or feet. This is called peripheral neuropathy. You may also find it hard to do up buttons or to do other fiddly tasks.

Tell your doctor if you have these symptoms. They may need to lower the dose of lenalidomide that you are taking. 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.

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.

Heart problems

Sometimes lenalidomide can change how your heart works. You may feel like your heart is beating too fast or too slowly. If you notice any changes in your heart beat or have any pain in your chest, tell your doctor straight away.

Blood pressure changes

Lenalidomide 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 as there are medicines that can help. If the swelling is uncomfortable, they may prescribe support stockings. It can help to sit with your feet and legs up on a stool or cushion. The swelling gets better after your treatment ends.

Eye problems

If you notice that your vision is blurry during treatment, or if your eyesight changes, tell your doctor or nurse.

Changes in hearing

Lenalidomide can affect your hearing or cause ringing in the ears (tinnitus). Tell your doctor or nurse if you notice any hearing changes.

Changes to your mood

Some people may have mood changes. These could be depression, anxiety, mood swings, restlessness or difficulty sleeping. If you feel depressed or have other changes to your mood, it is important to tell your doctor straight away.

Changes in how the kidneys work

Treatment with lenalidomide may cause changes in the way that your kidneys work, although this usually returns to normal when the treatment finishes. Your doctor will take regular blood samples to check your kidneys are working properly.

If you notice you are finding it difficult to pass urine, going to the toilet more or less often, or if there is blood in your urine, contact your doctor straight away.

Effects on lungs

Sometimes people feel more breathless or develop an infection while taking lenalidomide. Let your doctor know if you notice this.

Changes in thyroid hormone levels

This treatment can affect your thyroid hormone levels. You will have regular blood tests to check these.

Reduced levels of magnesium, potassium or calcium in the blood

You will have regular blood tests to check this. Your doctor may prescribe you supplements if the levels are too low.

Difficulty getting an erection

Some men have difficulty getting or maintaining an erection while on this treatment.

Hepatitis B reactivation

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


Other information about lenalidomide

Driving

Lenalidomide may affect your ability to drive. Do not drive if you have blurred vision, or if you feel dizzy, very tired or sleepy. Talk to your doctor for advice if you are not sure whether it is safe for you to drive.

Other medicines

Some medicines can be harmful to take when you are taking lenalidomide. Tell your doctor about any medicines you are taking, including ones you can buy for yourself in a shop or pharmacy, complementary therapies and herbal drugs.

Fertility

Doctors do not yet know how lenalidomide may affect fertility in men and women. If you are worried about this, talk to your doctor before starting your treatment.

Breastfeeding

Women are advised not to breastfeed during treatment and for a few months afterwards. This is in case there is any of the drug in their breast milk.

Medical or dental treatment

If you need to go to hospital for any reason not related to the cancer, always tell the doctors and nurses that you are taking lenalidomide. Tell them the name of your cancer doctor so that they can ask them for advice.

Always tell your dentist you are taking lenalidomide.