Thalidomide
Thalidomide is a targeted therapy drug.
What is thalidomide?
Thalidomide is a targeted therapy drug. It works in 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.
More information about this 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.
How thalidomide is given
Thalidomide is given as capsules (orally). You have it as an outpatient.
During a course of treatment, you usually see a:
- cancer doctor
- chemotherapy nurse or a specialist nurse
- 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 kidneys and liver are 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. 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, opened or crushed. 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:
- Wash your hands after taking your capsules.
- Do not touch the capsules if you are pregnant.
- If possible, you should handle the capsules yourself. If you need help, the person helping you should wear disposable gloves.
- Keep them in the original packaging.
- Keep them safe, somewhere children cannot see or reach them.
- 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.
Pregnancy tests and contraception
If you are of childbearing age, you will have a pregnancy test before starting treatment with thalidomide. The pregnancy test is 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.
Contraception to prevent making someone pregnant
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 that are less common.
You may get some of the side effects we mention, but you are unlikely to get all of them. And you may have some side effects, including rarer ones, that we have not listed here.
Other cancer treatments may cause different side effects. If you are also having other cancer treatment, you may have other side effects.
Always tell your doctor, nurse or pharmacist about any side effects you have. They can give you:
- drugs to help control some side effects
- advice about managing side effects.
It is important to take any drugs exactly as explained. This means they will be more likely to work for you.
Serious and life-threatening side effects
Some cancer treatments can cause serious side effects. Sometimes, these may be life-threatening. Your doctor, nurse or pharmacist can explain the risk of these side effects to you.
Contact the hospital
Your doctor, nurse or pharmacist will give you 24-hour contact numbers for the hospital. If you feel unwell or need advice, you can call at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.
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 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.
You will have regular blood tests during treatment. If your white blood cell count is low, your doctor may stop your treatment for a short time, until your cell count increases. Sometimes they will reduce the dose of your treatment.
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, 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.
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 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.
Dizziness, blurred vision, drowsiness
Numb or tingling hands or feet (peripheral neuropathy)
This treatment may affect the nerves in your fingers and toes. This can cause numbness, tingling or pain in your hands or feet. This is called peripheral neuropathy. You might find it hard to do fiddly tasks such as fastening buttons or tying shoelaces.
If you have these symptoms, always tell your doctor, nurse or pharmacist. They sometimes need to change the drug or the dose of the drug. The symptoms usually improve slowly after treatment ends. But for some people they continue and are a long-term side effect of treatment.
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 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.
Feeling sick
Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.
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. They may change your anti-sickness treatment. Let them know if you still feel sick.
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 can help.
Fluid build-up
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.
Mood changes
Effects on the lungs
This treatment can cause changes to the lungs. Tell your doctor, nurse or pharmacist if you develop:
- a cough that does not go away
- wheezing
- breathlessness.
You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.
Skin changes
This treatment may cause skin changes, including:
- a rash
- itching
- dry skin.
If you are out in the sun, use a sun cream with a high sun protection factor (at least SPF 50) to protect your skin. If you notice any skin changes during treatment or after it finishes, always tell your doctor or nurse straight away. 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
- peeling skin
- flu-like symptoms, such as a high temperature and joint pain.
If you have any of these symptoms, contact your doctor or hospital straight away.
Less common side effects of thalidomide
Allergic reaction
This treatment might cause an allergic reaction. But this is not common. Signs of a reaction can include:
- a skin rash or itching
- feeling breathless or wheezy
- swelling of your face, mouth or throat.
If you feel unwell or have any of these signs, contact the hospital straight away on the 24-hour number. Do not take any more of this treatment until you have checked with them.
Seizures (fits)
Thalidomide can cause seizures (fits) in some people. If this happens, contact the hospital straight away.
Effects on the kidneys
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.
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 may get better after this treatment ends. But this does not always happen. If you notice any changes in your hearing, tell your doctor, nurse or pharmacist.
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)
Some people are at risk of developing a condition called tumour lysis syndrome (TLS) during this treatment. When treatment makes large numbers of cancer cells die and break down quickly, they release lots of waste products into the blood. This can affect how well the kidneys work. It may also cause problems with the heart rhythm.
TLS can be prevented. You will have regular blood tests to check for TLS. If you are at risk of TLS, you may have:
- extra fluids through a drip
- medicines such as rasburicase through a drip, or allopurinol as tablets.
Drinking at least 2 litres (3½ pints) of fluid a day will also help.
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. 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.
Effects on the brain
Rarely, this treatment can affect the brain. It can cause a condition called posterior reversible encephalopathy syndrome (PRES). This is sometimes called reversible posterior leukoencephalopathy syndrome (RPLS). It can also cause a condition called progressive multifocal leukoencephalopathy.
These conditions can cause:
- a headache that does not get better
- drowsiness or confusion
- changes in eyesight
- seizures (fits).
If you or other people notice that you have any of these symptoms, it is important to act quickly.
You should either:
- call the 24-hour emergency number the hospital has given you
- go to the hospital straight away.
You should not drive yourself to hospital.
You can make a full recovery from PRES. But it needs to be diagnosed and treated quickly.
Second cancer
Change in periods
If you have periods, you may find they become irregular, lighter, or stop during this treatment. This does not always mean you are unable to get pregnant. Even if your periods stop or are irregular when taking this treatment, you still need to use contraception to prevent a pregnancy. Your doctor or nurse can tell you more about this.
Other information
Donating blood
You must not give blood during this treatment, or for 1 week after.
Other medicines
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.
Vaccinations
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.
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.
Breastfeeding
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.
Medical and dental 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.
About our information
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References
Visit the electronic Medicines Compendium (eMC) to download a Patient Information Leaflet (PIL) for more detailed information. The leaflet lists all known side effects.
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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.
The language we use
We want everyone affected by cancer to feel our information is written for them.
We want our information to be as clear as possible. To do this, we try to:
- use plain English
- explain medical words
- use short sentences
- use illustrations to explain text
- structure the information clearly
- make sure important points are clear.
We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.
You can read more about how we produce our information here.
Date reviewed
Our cancer information meets the PIF TICK quality mark.
This means it is easy to use, up-to-date and based on the latest evidence. Learn more about how we produce our information.
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