Total body irradiation (TBI)

Why you have TBI

Radiotherapy is a treatment that uses high energy rays, similar to x-rays. As preparation for your stem cell or bone marrow transplant, you might have TBI at the same time as:

• high dose chemotherapy drugs

• targeted cancer drugs

It is a treatment for some people with:

• lymphoma - cancer of the lymphatic system

• leukaemia - cancer that develops in the white blood cells of the immune system

• myelodysplastic syndromes (MDS) - a group of blood cancers where the bone marrow doesn’t work properly and makes abnormal blood cells

TBI alongside chemotherapy helps to kill cancer cells in the bone marrow. In a transplant using donor stem cells, TBI also suppresses the immune system. This helps to prevent a rejection of the donor stem cells.

How often do you have TBI?

You usually have TBI treatment twice a day for 3 or 4 days. Or it may be 1 or 2 radiotherapy treatments. Radiographers give the treatment. They will explain to you how they plan the treatment and how you have radiotherapy.

The radiotherapy room

Radiotherapy machines are very big and could make you feel nervous when you see them for the first time. The machine might be fixed in one position. Or it might rotate around your body to give treatment from different directions. The machine doesn't touch you at any point.

Before your first treatment, your radiographers will explain what you will see and hear. In some departments, the treatment rooms have docks for you to plug in your phone or personal device. So you might be able to listen to an audiobook, a podcast or music during the treatment.

Planning treatment

First you have a planning session of about 90 minutes to create the treatment plan. You take off any jewellery, your watch and your glasses. You will also need to take out false teeth containing metal. You lie down on a treatment couch or stand up in a specially designed frame.

Treatment lying down

Your radiographers measure the thickness of different parts of your body. They put small radiation monitors called diodes on your body. They might use padding material or gel bags between your knees and over your chest and neck. This is to make sure you receive an even dose of radiation throughout your body.

During the planning session, you lie on a couch. You have a very small dose of radiotherapy from a radiotherapy machine next to the treatment couch. The couch moves so you can have treatment to one half of your body. Then the couch turns so that the machine can give treatment to the other side.

Treatment standing up

You stand in a specially designed frame that supports you. First you stand facing the radiotherapy machine and then you turn so that your back is towards the machine.

Treatment sessions

Your radiographers help you get into exactly the same position as in your planning appointment. This can take up to half an hour. They tape small radiation monitors to some areas of your body to monitor the dose.

The lights in the room dim for a few minutes while the radiographers position you. They leave the room while the machine is on. But they can watch you closely on closed circuit TV during the treatment. It is important that you stay as still as you can but you can breathe normally. The treatment takes up to 15 minutes on each side of your body. But you will usually spend around an hour in the treatment room.

You have a buzzer that you can press at any time if you need the treatment to be stopped. You don't feel anything but when the machine is on you will hear a beeping noise.

Side effects

The possible side effects depend on a many factors including:

• your dose of TBI

• the combination of cancer drugs you have (for example chemotherapy and targeted cancer drugs)

During the treatment and for some time afterwards you are likely to have some side effects.

Tiredness

Feeling or being sick

Diarrhoea

Radiotherapy can inflame the lining of your bowel. This can cause diarrhoea. You may also have:

• griping or cramping pain

• an increase in wind

• feeling you need to go to the toilet urgently

• some mucus or blood in your poo (stool)

It’s important to drink plenty if you have diarrhoea, so you don't become dehydrated. Your doctor might prescribe tablets to help slow down your bowel if you need them. This should help to reduce the number of times you have diarrhoea. Changing your diet might also help lessen the number of times you need to go, such as reducing the amount of fibre if you have been following a diet very high in fibre. Ask your nurse or doctor about this.

Ask your nurse or radiographer for soothing creams to apply around your back passage (anus). The skin in that area can get very sore and might break if you have severe diarrhoea.

Diarrhoea should gradually get better a few weeks after your treatment has finished. Let your doctor or nurse know if it continues.

Dry and sore mouth

Mouth sores and ulcers can be painful. It helps to keep your mouth and teeth clean, drink plenty of fluids and avoid acidic foods such as lemons. Chewing gum can help to keep your mouth moist. Tell your doctor or nurse if you have ulcers. They can give you drinks, mouthwashes and painkillers to help.

Face swelling

You might have a swollen face and a stiff jaw for a few weeks after having TBI.

You may not feel like eating and have a loss of taste.

Skin changes

Radiotherapy can make your skin red, or look darker. This can vary depending on your skin tone. It can also feel sore and itchy. Your healthcare team can give you creams to soothe your skin.

Hair loss

Radiotherapy can cause hair loss where you are having treatment. So TBI can mean complete head and body hair loss. This is usually temporary and will grow back gradually when treatment has finished.

Risk of infection

TBI and chemotherapy cause your blood levels to become low. So you are more at risk of getting an infection. You might have antibiotics. Due to a high risk of infection, you may stay in a single room (isolation) in hospital.

Low blood levels

TBI can affect your red and white blood cells, causing the levels to drop. It can also reduce the number of a cell called platelets. You might be breathless and look pale due to a drop in red blood cells. This is called anaemia. Low platelet levels can cause bleeding, for example bleeding gums and nosebleeds. You may have blood transfusions and platelet transfusions through a drip.

Tummy (abdominal) pain

You may have some abdominal pain or feel uncomfortable. Let your healthcare team know if you have this.

Long term side effects

TBI can have long term effects. It can make your skin sensitive and you will need to be extra careful in the sun for several months after treatment. Talk to your specialist about the precautions you should take to protect your skin in the sun.

There are other long term effects that can be more permanent. 

Lung changes

You might develop a cough or breathing problems. This could be due to inflammation on the lungs (pneumonitis). TBI can cause changes in the lung such as thickening or scarring of the tissue (fibrosis). This can cause breathlessness, coughing or wheezing. You will have regular tests to check how well your lungs are working. And you may need antibiotics to prevent infection. Breathing exercises can help.

Clouding of the lens of the eye (cataracts)

It is possible that you might develop cataracts several years after treatment. This means the lens inside your eye clouds over and it becomes increasingly difficult to see. This is less common now because radiotherapy is usually given over a few days. 

Your doctor will refer you to an eye specialist (ophthalmologist) if you develop a cataract. Cataracts are usually easy to treat with surgery. The eye specialist removes the clouded lens and puts a man made one in its place.

Fertility problems

Unfortunately, you are usually unable to become pregnant or get someone pregnant after TBI and high dose chemotherapy.

In women, the treatment is likely to cause an early menopause. Sometimes it is possible for women to freeze their eggs or embryos before cancer treatment. But it takes time to stimulate your ovaries to collect the eggs. Your doctor may not want you to delay starting cancer treatment.

Men may be able to bank sperm before starting treatment.

Ask your doctor and nurse if you're not sure about anything. They can explain what your options are. 

Underactive thyroid

The thyroid gland produces hormones that regulate our body metabolism. Low levels of these hormones can cause weight gain, tiredness, constipation and dry skin. You will have blood tests to check your hormone levels. If they are low, you can take thyroid hormone tablets.

A second cancer

TBI and high dose chemotherapy can increase your risk of getting a second cancer. This is a worrying thought but it is important to remember that it is a very small risk. And it is less of a risk to your health than if you don't have treatment for your cancer.