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Lenalidomide (Revlimid)

Lenalidomide is a cancer drug and is also known by its brand name, Revlimid.

It is a treatment for myeloma and blood disorders called myelodysplastic syndromes. You may also have it as part of clinical trials for other types of cancer.

For myeloma, you might have lenalidomide with a steroid drug called dexamethasone. Or with a chemotherapy drug called melphalan and dexamethasone.

How it works

Researchers are still finding out exactly how lenalidomide works. It affects all sorts of cell processes, including how cells divide and grow.

We know that it interferes with chemicals that cells use to signal to each other to grow. It affects how the immune system works and is called an immunomodulatory agent. It also stops tumours making their own blood vessels. To develop, all cancers need a blood supply.

How you have it

Lenalidomide comes as capsules that you take with a glass of water. You need to swallow them whole. Don’t break or chew them. You should take lenalidomide at the same time every day.

You can take the capsules with or without food.

Taking your capsules

You must take capsules according to the instructions your doctor or pharmacist gives you.

You should take the right dose, not more or less.

Never stop taking a cancer drug without talking to your specialist first.

When you have it

You take lenalidomide every day for 3 weeks and then have a break for 1 week. This is one cycle of treatment. You then start the next cycle. 

If you forget to take lenalidomide at your regular time but less than 12 hours have passed, take the capsule straight away. If more than 12 hours have passed do not take the capsule but just take your next capsule at the usual time the next day. 

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

Side effects

We haven't listed all the side effects. It is very unlikely that you will have all of these side effects, but you might have some of them at the same time.

How often and how severe the side effects are can vary from person to person. They also depend on what other treatment you are having. For example, your side effects could be worse if you are also having other drugs or radiotherapy.

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you closely during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

  • you have severe side effects 
  • your side effects aren’t getting any better
  • your side effects are getting worse

Early treatment can help manage side effects better. 

Contact your doctor or nurse immediately if you have signs of infection, including a temperature above 37.5C or below 36C.

Common side effects

These side effects happen in more than 10 in 100 people (10%). You might have one or more of them. They include:

Increased risk of getting an infection

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, headaches, feeling cold and shivery and generally unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection. 

Breathlessness and looking pale

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.

Bruising, bleeding gums or nosebleeds

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechia).

Tiredness and weakness (fatigue)

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

Diarrhoea

Contact your advice line if you have diarrhoea, that is 4 loose watery poos (stools) in 24 hours. Or if you can't drink to replace the lost fluid, or if it carries on for more than 3 days. Your doctor may give you anti diarrhoea medicine to take home with you after treatment. Eat less fibre, avoid raw fruits, fruit juice, cereals and vegetables, and drink plenty of liquid to replace the fluid lost.

Constipation

Constipation is easier to sort out if you treat it early. Drink plenty of fluids and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your doctor or nurse if you are constipated for more than 3 days. They can prescribe a laxative.

Blood clots

Blood clots can develop in the deep veins of your body, usually the leg. This is called deep vein thrombosis (DVT). A blood clot can be very serious if it travels to your lungs (pulmonary embolism), although this isn’t common.

Symptoms of a blood clot include:

•    pain, redness and swelling around the area where the clot is and may feel warm to touch
•    breathlessness
•    pain in your chest or upper back – dial 999 if you have chest pain
•    coughing up blood

Tell your doctor immediately or go to A&E if you have any symptoms of a blood clot.

Skin rash

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes.

Eyesight problems

You might have blurred vision or clouding of the lens (cataract). Contact to your team if you have any new problems with your vision.

Shaky hands (tremor)

Talk to the team looking after you about this.

Numbness or tingling in fingers or toes

Numbness or tingling in fingers or toes is often temporary and can improve after you finish treatment.

Talk to the team looking after you when you first notice this. 

Headaches and dizziness

Let your doctor or nurse know if you have headaches. They can give you painkillers. Don’t drive or operate heavy machinery if you feel dizzy.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. Avoiding fatty or fried foods, eating small meals and snacks, drinking plenty of water, and relaxation techniques, can all help.

Changes in mineral levels in the blood

You may have changes in levels of minerals and salts in your blood, including low levels of sodium or high levels of uric acid (causing gout). You have regular blood tests during treatment to check this.

Kidney changes

To help prevent kidney damage, it is important to drink plenty of water. You might also have fluids into your vein before, during and after treatment. You have blood tests before your treatments to check how well your kidneys are working.

Fluid build up

You may have swelling of your hands and legs due to a build up of fluid (oedema). 

Taste changes

Taste changes may make you go off certain foods and drinks. You may also find that some foods taste different from usual or that you prefer to eat spicier foods. Your taste gradually goes back to normal a few weeks after your treatment finishes.

Changes in blood sugar levels

You have regular blood and urine tests to check this. If you have diabetes you may need to check your blood sugar levels more often than usual. 

Mood changes and difficulty sleeping

Talk to your healthcare team if your mood is affected.

It can help to change a few things about how you try to sleep. Try to go to bed and get up at the same time each day and spend some time relaxing before you go to bed. Some light exercise each day may also help. 

Pain 

You may have painful bones and joints or muscle pain. Some people have tummy (abdominal pain). Talk to your healthcare team, they may be able to prescribe pain relief.

Flu-like symptoms

You may have headaches, muscle aches (myalgia), a high temperature and shivering.

Dry, sore mouth

Your mouth might get sore. You will have mouth washes to keep your mouth healthy. You can have painkillers to reduce the soreness. Take them half an hour before meals to make eating easier.

If you have a dry mouth it can help to drink plenty of fluids after treatment. An artificial saliva spray into your mouth might help. Ask you healthcare team about this.

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (1 to 10%). You might have one or more of them. They include:

  • heart problems such as heart failure or a heart attack
  • loss of appetite and weight loss
  • low levels of thyroid hormones, causing tiredness for example
  • liver changes
  • hearing problems such as hearing loss or ringing in your ears (tinnitus)
  • difficulty balancing
  • itching of skin and sweating
  • urine infections
  • darkening of the skin
  • increased risk of certain blood disorders
  • difficulty getting an erection
  • depression
  • heartburn and indigestion

Rare side effects

These side effects happen in fewer than 1 in 100 people (1%). You might have one or more of them. They include:

  • severe allergic reaction
  • loss of interest in sex
  • bloating, and diarrhoea caused by inflammation of the bowel
  • skin sensitivity to sunlight
  • bleeding in the brain
  • severe kidney changes

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do I need to know?

Other medicines, foods and drink

Cancer drugs can interact with some other medicines and herbal products. Tell your doctor or pharmacist about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies.

Lactose intolerance

This drug contains lactose (milk sugar). If you have intolerance to lactose, contact your doctor before taking this medicine.

Pregnancy and contraception

Lenalidomide can cause birth defects in children. So you must not become pregnant or father a child while taking this drug. Your doctor will talk to you about effective methods of contraception before you have the treatment. Some people worry about taking lenalidomide but it doesn’t cause physical defects in adults.

Because lenalidomide causes birth defects, your doctor will talk to you before you start treatment. They will make sure that you understand the risks of taking lenalidomide and agree to use contraception:

  • for 4 weeks before you start treatment
  • during treatment
  • for 4 weeks after you finish treatment

Women also need to have pregnancy tests every 4 weeks while having treatment and 4 weeks afterwards.

Men with a female partner who could become pregnant should use condoms during sex for the time they are having treatment and for a week after finishing treatment. 

Pregnant women should not touch or handle lenalidomide. You must store it in a place where pregnant women or children cannot reach it.

Fertility

You may not be able to become pregnant or father a child after treatment with this drug. Talk to your doctor before starting treatment if you think you may want to have a baby in the future. Men may be able to store sperm before starting treatment. Women may be able to store eggs or ovarian tissue but this is rare.

Breastfeeding

It is not known whether this drug comes through into the breast milk. Doctors usually advise that you don’t breastfeed during this treatment.

Treatment for other conditions

Always tell other doctors, nurses, pharmacists or dentists that you’re having this treatment if you need treatment for anything else, including teeth problems.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and the shingles vaccine (Zostavax).

You can:

  • have other vaccines, but they might not give you as much protection as usual
  • have the flu vaccine (as an injection)
  • be in contact with other people who have had live vaccines as injections

Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as oral polio or the typhoid vaccine.

This also includes the rotavirus vaccine given to babies. The virus is in the baby’s poo for up to 2 weeks and could make you ill. So avoid changing their nappies for 2 weeks after their vaccination if possible. Or wear disposable gloves and wash your hands well afterwards.

You should also avoid close contact with children who have had the flu vaccine nasal spray if your immune system is severely weakened. 

More information about this treatment

For further information about this treatment go to the electronic Medicines Compendium (eMC) website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.

Information and help

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