Potential side effects

Any side effects you have will depend on the type and strength of your high-dose treatment. Your hospital team will tell you what to expect and how the side effects can be managed.

Possible side effects include increased risk of infection, anaemia and bleeding due to low blood counts. You may also have sickness, reduced appetite and a sore mouth. A dietician and your nurse will help you manage these. You may notice other side effects such as hair loss and tiredness. Less common problems include graft failure.

You will have regular tests to check your general health. You’ll also have blood tests to monitor the levels of your blood cells. Most side effects are worse when your blood count is at its lowest. As this goes up, your side effects will start to improve. When your blood count has reached a safe level, you’ll be able to go home.

The side effects of high-dose treatment

The side effects you have will depend on the type of high-dose treatment you had. Most side effects are worst when your blood count is at its lowest – usually at the end of the first week and throughout the second week after high-dose treatment.

When your blood count goes up, the side effects will start to improve. You’ll be at less risk of infection, your appetite will improve and you’ll start to feel better.

You will be given medicines to prevent or reduce side effects. Always tell your doctor or nurse about any side effects you have. They may be able to change the medicines you’re already taking to more effective ones.

Your hospital team will give you more information about what to expect.


Risk of infection

A neutrophil is a type of white blood cell. It is very important for fighting infection. The number of neutrophils in your blood will be very low after high-dose treatment. This increases your risk of infection.

You’ll be at risk of infections from the bacteria that live on your skin and in your digestive system. These bacteria are normally useful to our bodies, but when the immune system isn’t working as well as usual, they may cause infections. A lot of your care will involve preventing and treating infection.

You’ll be given medicines to prevent and treat infections. Nurses and doctors will monitor you closely for signs of infection. They’ll also ask you to tell them if you have any symptoms that could be a sign of infection. These include feeling cold and shivery, having a sore throat, having a cough, or pain when passing urine.

The hospital staff will take precautions to protect you from possible infections, but most people develop a high temperature and need antibiotics at some point while their immune system recovers.

Keeping clean

The hospital staff will try to make sure you aren’t exposed to any infections. Your room will be cleaned daily and your sheets changed. In most hospitals, you’ll have your own toilet and shower.

It’s also important to make sure your skin is kept clean. The nurses will give you advice about showering and washing your hands. They can help you if you’re tired. They’ll also show you how to look after your mouth and keep it clean.

Being careful with food

While you’re in hospital, there will be rules about preparing food and what you can eat. This is to help you avoid foods that contain harmful bacteria. Each hospital will have its own guidelines.

The nurses and doctors will give you advice. Some general precautions are:

  • Avoid soft cheeses, pâté and unpasteurised foods.
  • Don’t eat lightly cooked or uncooked eggs.
  • Fruit and vegetables (if allowed) need to be thoroughly washed and peeled.
  • Hot meals should be freshly prepared and thoroughly cooked (not reheated).
  • Avoid takeaway foods.

Visitors

Hospital rules about visitors vary. You may be restricted to only a few visitors each day. People who are unwell because of an infection, such as a cold or tummy bug, will be told not to visit. The nurses will explain whether your visitors need to take any precautions.


Anaemia

High-dose treatment can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If there are low levels of red blood cells, you may be tired and breathless. Tell your doctor or nurse if you feel like this. You may need regular blood transfusions until your body starts to make enough red blood cells again.

Irradiated blood

If you have a blood transfusion, the blood may be treated with radiation (irradiated) before being given to you. This is to prevent any problems caused by white blood cells called lymphocytes, which may be in the donated blood. Irradiated blood isn’t radioactive and won’t harm you or anyone you come into contact with.

You will continue to have irradiated blood, when you need a transfusion, for up to six months after treatment has finished. Some people may need to have irradiated blood for the rest of their life. Your doctor can talk to you about this. You will be given a medical alert card to carry in case you need blood in an emergency.


Bruising and bleeding

High-dose treatment reduces the number of platelets in your blood. Platelets are cells that help the blood to clot. You’re likely to need transfusions of platelets (which may also be irradiated) to reduce the risk of bleeding or bruising.

Doctors and nurses will examine you regularly for little red spots on the skin. If you have any bruising you can’t explain, a nosebleed, bleeding gums or blood in your stools (bowel motions) or urine, tell a doctor or nurse straight away.


Feeling sick (nausea) and being sick (vomiting)

High-dose treatment can make you feel sick or sometimes be sick. Your doctor will prescribe anti-sickness (anti-emetic) drugs to prevent or reduce this. Let your doctor or nurse know if your anti-sickness drugs are not helping, as there are several different types you can try.

Anti-sickness medicines can be given as tablets, by injection into your line or port, or under the skin (subcutaneously).


Sore mouth

The treatment can cause painful throat and mouth ulcers. While your white blood cell count is low, you’re also at risk of mouth infections. Keeping your mouth clean is important to prevent infections that can spread to other parts of your body.

The nurses will advise you how to look after your mouth and teeth. Use a soft toothbrush when cleaning your teeth to protect your gums. You’ll be given mouthwashes to use regularly to try to prevent infections. If your mouth is sore, talk to your doctor or nurse. They can give you some painkillers.


Eating problems

During treatment, it’s important you don’t lose too much weight. You’ll be encouraged to try to eat small meals and snacks even if you don’t have much appetite or if food tastes different. The nurses will give you advice, and you may also talk to a dietitian to make sure you’re eating as well as possible.

If you have a sore mouth, eating may be difficult. You may need to have nutritional drinks until you can eat properly again. Occasionally, people need to have liquid food through a thin, soft tube that goes down the nose into the stomach (a feeding tube). Some people may have another type of liquid food that’s given through their central line.

As you start to eat again, the amount of liquid food you’re given is gradually reduced.

We have more information on eating problems and cancer.


Diarrhoea

If you have diarrhoea caused by chemotherapy, your doctor can prescribe drugs to control it. Let them know if it is severe or if it doesn’t get better.

Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea. If you are not able to drink very much because of a sore mouth, you may be given fluids through a drip (infusion).


Hair loss

This is a common side effect of chemotherapy. You usually lose all the hair on your head. Your eyelashes, eyebrows and other body hair may also thin or fall out. It is almost always temporary and your hair will grow back.

Our section on coping with hair loss has useful information and tips on using hats, scarves and wigs.


Tiredness

You’ll probably feel very tired and spend a lot of time sleeping. Sometimes you may feel too tired to concentrate enough to read or even watch television. At times, you may not feel able to have visitors or to see them for too long. Let them know how you’re feeling so they don’t disturb you if you want to rest. You’ll probably get tired easily for some months after your treatment, but this will gradually get better.

Exercise

Although you’re tired, it’s a good idea to try to do some gentle exercise, such as stretching. The physiotherapist can give you some suggestions. These help reduce the chances of getting a blood clot, and keep your muscles working and toned.

Some transplant units may have an exercise bike that you can use, when you’re feeling better and your blood counts have improved. Some units also have exercise programmes that you can continue with when you go home.


Starting to recover

When your blood count has reached a safe level, you’ll be able to go home, as long as a relative or friend stays with you. You’ll be given a 24-hour telephone contact number in case you have any worries. You’ll need to go back to the hospital regularly as an outpatient for check-ups.


Less common problems

Graft failure

Sometimes the infusion of stem cells doesn’t work and the bone marrow doesn’t produce enough new blood cells. This is known as graft failure and can lead to repeated infections, bruising, bleeding and anaemia. In this situation, growth factors  may be used to try to stimulate the bone marrow to recover.

Total graft failure is rare, and the only way to treat this is with a second infusion of stem cells.

Second cancer

High-dose treatment can increase the risk of developing some types of cancer or leukaemia later in life. This is rare, and your doctors will weight up this small increase in risk alongside the benefit of treating your cancer.