What is thalidomide?

Thalidomide is used to treat myeloma. It is best to read this information with our general information about myeloma.

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

Thalidomide can:

  • help the immune system attack and destroy cancer cells (immune system modulator)
  • kill or stop the growth of cancer cells (cancer growth inhibitor)
  • block the development of new blood vessels which cancer cells need to grow and spread (angiogenesis inhibitor).

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

How thalidomide is given

Thalidomide is given as capsules (orally). You will be given it as an outpatient.

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

You will have regular blood tests during treatment to check your blood cell levels and how well your liver is working.

Your course of treatment

Thalidomide comes in capsules, so you can take it at home. Thalidomide is usually taken with other chemotherapy drugs and steroids as treatment for myeloma. Your doctor will decide which combination of drugs you have. Sometimes you may have thalidomide on its own or with just a steroid.

You usually have a course of several cycles of treatment over a few months. Your nurse, pharmacist or doctor will discuss your treatment plan with you. They may give you a copy of the treatment plan to take home with you.

Taking thalidomide

You take thalidomide once a day. It can make you feel sleepy, so it is best to take it in the evening before you go to bed. Swallow them whole with a glass of water. The capsules should not be chewed or opened. Take them at the same time every day.

Always take your capsules as directed by your doctor, nurse or pharmacist. This is to make sure they work as well as possible for you.

If you forget to take your thalidomide and less than 12 hours have passed, you should take the dose as soon as possible. If more than 12 hours have passed, do not take the missed dose. Just take your usual dose at the usual time the next day. Do not take a double dose unless your doctor tells you to.

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

  • Keep them in the original packaging. 
  • Keep them safe and out of sight and reach of children.
  • If you are sick just after taking the capsules, contact the hospital. Do not take another dose without talking to your doctor first.
  • If your treatment is stopped, return any remaining capsules to the pharmacist. Do not flush them down the toilet or throw them away.
  • Thalidomide can make you feel sleepy. Because of this, you should not drink alcohol while taking thalidomide.
  • If you plan to travel abroad, check whether the country you are visiting has any special rules about thalidomide.

Preventing pregnancy while taking thalidomide

You must not become pregnant or make someone pregnant while taking thalidomide. This is because it may cause severe abnormalities in developing babies.

You will take part in a pregnancy prevention programme during treatment. Even if you do not think you are at risk of getting pregnant or making someone pregnant, you may still be included in this programme. You can talk to your doctor or specialist nurse about this.

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

For women taking thalidomide

Women of childbearing age will have a pregnancy test before starting treatment with thalidomide. 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
  • 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 thalidomide

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

Common side effects of thalidomide

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 sometimes 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. Contact the hospital straight away on the 24-hour contact number you have been given 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
  • your temperature goes below 36°C (96.8°F).

Symptoms of an infection include:

  • feeling shivery and shaking
  • a sore throat
  • a cough
  • breathlessness
  • diarrhoea
  • needing to pass urine (pee) a lot, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

You will have regular blood tests during treatment. If needed, your doctor may reduce or delay your treatment for a short time, until your cell count increases.

Bruising and bleeding

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 or purple spots on the skin that may look like a rash.

Tell your doctor if you have any unexplained bruising or bleeding. You may need a drip to give you 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. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may have symptoms such as:

  • pale skin
  • lack of energy
  • feeling breathless
  • feeling dizzy and light-headed.

Tell your doctor or nurse if you have these symptoms.

If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Feeling tired

Thalidomide can make you feel tired. Taking your thalidomide in the evening or before you go to bed can help with this. You may find that you feel less tired as you continue to take the drug. Tell your doctor if feeling tired continues to be a problem for you. 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.

Dizziness, blurred vision, drowsiness

This treatment can cause dizziness, blurred vision or drowsiness. Do not drive or operate machinery if you have these side effects. Talk to your doctor or nurse if you notice any of these effects.

Numb or tingling hands or feet (peripheral neuropathy)

This treatment may affect 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.

Constipation

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 for advice. Your doctor can give you drugs called laxatives to help.

Feeling sick

Your doctor will give you anti-sickness drugs to help prevent or control sickness during your treatment. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit) more than once in 24 hours, contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may change the anti-sickness drug to one that works better for you.

Dry mouth

You may get a dry mouth. Drink plenty of fluids and add sauces and gravies to your food to keep it moist. If you have dry lips, using a lip balm or Vaseline® can help.

Fluid build-up

You may gain weight, or your face, ankles and legs may swell. This improves slowly after your treatment has finished. Your doctor may give you drugs to help reduce the swelling.

Effects on the lungs

This treatment can cause changes to the lungs. Tell your doctor if you develop:

  • a cough
  • wheezing
  • breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

Mood changes

Some people taking thalidomide can have a low mood or become anxious. Tell your doctor if you notice any mood changes. 

Shaking (tremor)

Your hands might shake more than usual. Tell your doctor if you notice this. It will get better after your treatment ends.

Skin changes

This treatment may cause skin changes, including:

  • a rash
  • itching
  • patches of white or paler skin.

If you are out in the sun, use a sun cream with a high sun protection factor (at least SPF 30) to protect your skin. Always tell your doctor or nurse straight away if you notice any skin changes during treatment or after it finishes. You may need creams, steroids or other medicines. Your doctor may stop your treatment until the skin changes improve.

Rarely, a much more serious skin condition can develop. You may have a skin rash which then blisters, and your skin can peel. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, contact your doctor or hospital immediately.

Less common side effects of thalidomide

Allergic reaction

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

  • feeling hot or flushed
  • a skin rash
  • itching
  • shivering
  • feeling dizzy
  • a headache
  • feeling breathless.

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.

Seizures (fits)

Thalidomide can cause seizures (fits) in some people. Contact the hospital straight away if this happens.

Effects on the kidneys

This treatment can affect how your kidneys work. This is usually mild and goes back to normal after treatment finishes. 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.

Hearing changes

This treatment may cause hearing changes, including hearing loss. You may have ringing in the ears. This is called tinnitus. You may also become unable to hear some high-pitched sounds. Hearing changes usually get better after this treatment ends. But some can be permanent. Tell your doctor if you notice any changes in your hearing.

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.

Tumour lysis syndrome (TLS)

Rarely this treatment may cause the cancer cells to break down very quickly in some people. This releases uric acid (a waste product) into the blood. The kidneys usually get rid of uric acid, but may not be able cope with large amounts. This can cause chemical imbalances in the blood that affect the kidneys and the heart. This is called tumour lysis syndrome (TLS).

Your doctor may give you drugs to reduce the risk of TLS. They may also ask you to drink more fluids on the day of your treatment. Your doctor or nurse will explain more about this.

Effects on the heart

Sometimes thalidomide can affect the heart. You may notice your heart feels like it is beating too slowly. Let your doctor know if this happens.

You may have tests to see how well your heart is working. These may be done before, during and after treatment.

If the treatment is causing heart problems, your doctor may change the type of treatment you are having.

Contact your doctor straight away on the 24-hour number the hospital has given you if you have any of these symptoms during or after treatment:

  • pain or tightness in your chest
  • breathlessness
  • dizziness
  • changes to your heartbeat.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

Blood clot risk

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

  • throbbing pain, redness or swelling in a leg or arm
  • suddenly feeling breathless or coughing
  • sharp chest pain, which may be worse when you cough or take a deep breath.

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

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

You can help reduce the risk of developing a blood clot by:

  • staying active during treatment
  • drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

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.

Change in periods

In women, your monthly periods should stop while you are having this treatment. This is caused by the lower levels of oestrogen in the body. Tell your doctor if this does not happen.

When you finish treatment, your periods are likely to start again. But some women go through their natural menopause during treatment and their periods do not come back.

Even if your periods stop, you can still become pregnant. You need to make sure that you use effective contraception. You can discuss this with your doctor or nurse.

Other information

Donating blood

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

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

  • medicines you have been prescribed
  • medicines you buy in a shop or chemist
  • vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Vaccinations

Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.

Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.

If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines, such as shingles, contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.

Breastfeeding

You are advised not to breastfeed while having this treatment, or for some time after treatment finishes. This is because the drugs could be passed to the baby through breast milk.

Your doctor or nurse can give you more information.

Fertility

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.

Medical and dental treatment

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

About our information


  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.