Thalidomide (Thalidomide Celgene™)

Thalidomide is a targeted therapy drug used to treat myeloma. It is best to read this information with our general information about the type of cancer you have.

Thalidomide is given as capsules. You usually have it as an outpatient. Your cancer doctor or nurse will tell you how often you will have it.

Like all targeted therapy drugs, thalidomide can cause side effects. Some side effects can be serious, so It’s important to read the detailed information below. How targeted therapy affects people varies from person to person. 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 don’t 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 to seek medical attention for any reason other than cancer, always tell the healthcare staff that you are having this treatment.

When thalidomide is used

Thalidomide is usually taken with other chemotherapy drugs and steroids as treatment for myeloma. Your doctor will decide which combination of drugs you have. The combination of drugs will depend on:

  • the stage of the myeloma and how it is affecting you
  • what treatments you have had before
  • your general health
  • whether high-dose chemotherapy and a stem cell transplant are part of your treatment plan.

Each combination of drugs includes a steroid. This will either be dexamethasone or prednisolone. Sometimes you may have thalidomide on its own or just with a steroid, usually dexamethasone.

Thalidomide was originally developed to treat morning sickness in pregnant women. Its use was stopped because it was found to cause birth defects. Thalidomide is now used as a treatment for cancer, but it must not be taken in pregnancy. A pregnancy prevention programme must be followed during treatment.


How thalidomide works

Thalidomide 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 thalidomide

You usually take thalidomide once a day. Thalidomide can make you feel sleepy, so it is best to take it at bedtime or in the evening. The capsules should be swallowed whole with plenty of water. The capsules should not be chewed or opened.

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 you realise. 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. You should never take a double dose.

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

  • If you are sick just after taking the capsules, tell your doctor. You may need to take another dose. Do not take another dose without telling your doctor first.
  • Keep the capsules in the original packaging and in a safe place, out of the reach of children.
  • If your doctor decides to stop the treatment, 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 take part in a pregnancy prevention programme while taking thalidomide. Your doctor will give you information about not becoming pregnant or fathering a child during and after treatment with thalidomide. This is because thalidomide can cause birth defects in developing babies. Both men and woman taking thalidomide can pass this risk on to an unborn child.

Your doctor or specialist nurse will give you written information about the risks of thalidomide and the best ways to prevent 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. This will be repeated every four weeks during treatment and 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 thalidomide

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

We have included the most common side effects of thalidomide here. We have also included some less common and rarer side effects. You may get some of the side effects we mention, 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. This will help the drugs work as well as possible for you.

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.

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.

Allergic reaction

Some people may have an allergic reaction to thalidomide. Signs include:

  • a skin rash
  • itching
  • wheezing
  • difficulty breathing
  • breathlessness.

Let your nurse or doctor know straight away if you have any of these symptoms. Do not take any more doses until you have spoken to them.

Risk of blood clots

Cancer increases the chances of a blood clot (thrombosis), and thalidomide can add to this risk. A clot can cause symptoms such as:

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

Contact your doctor straight away if you have any of these symptoms. A blood clot is serious but can be treated with drugs that thin the blood. You may be given these drugs while you are taking thalidomide to help stop any clots from forming. Your doctor or nurse can give you more information.

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 shaky
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine a lot.

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.

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 or nurse if you have any bruising or bleeding that you can’t explain. This includes:

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

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 blood cells. This is called a blood transfusion.

Feeling tired or sleepy

Thalidomide can make you feel tired and sleepy. Taking your thalidomide in the evening or at bedtime can help with this. You may find this improves as you continue to take the drug. Tell your doctor if this continues to be a problem for you. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. Do not drive or operate machinery if you are feeling sleepy.

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.

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.

Dizziness on standing

You may feel dizzy for a few moments if you stand up quickly. This is caused by a temporary fall in blood pressure. Moving slowly from lying to sitting and then sitting to standing may help. Tell your doctor if you have ever had any blood pressure problems and about any medicines you are taking.

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.

Sometimes, thalidomide can cause a more serious skin rash that blisters. Let your doctor know straight away if this happens.

Build up of fluid

Your ankles, legs or hands 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. The swelling gets better after your treatment ends.

Eye problems

You may notice your vision is blurry during treatment. Tell your doctor or nurse if you notice this. Do not drive if your vision is affected.

Feeling sick (nausea) and being sick (vomiting)

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 other anti-sickness drugs that may work better for you.

Loss of appetite

This treatment can affect your appetite. Do not worry if you don’t 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.

Heart problems

Sometimes thalidomide can change how your heart works. The heart may feel as if it is beating too slowly. If you notice any changes in your heartbeat or have any pain in your chest, tell your doctor straight away.

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 doesn’t improve or gets worse.

Effects on the lungs

Sometimes people feel more breathless or develop an infection while taking thalidomide. Let your doctor know if you feel short of breath or have a cough.

Mood changes

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

It is important to let your doctor know straight away if you feel unwell or have any severe side effects, even if they are not mentioned above.


Other information about thalidomide

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 drugs

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

Fertility

Doctors don’t yet know how this treatment may affect your fertility (the ability to become pregnant or father a child). If you are worried about this, talk to you doctor before treatment starts.

Breastfeeding

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

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 this treatment.