Short term side effects of treatment for acute lymphoblastic leukaemia (ALL)

Side effects are unwanted things that happen to you as a result of medical treatment. The side effects that you might have and how severe they are depend on a number of factors including:

• the type of treatment you have
• the combination of treatments you have
• the amount (dose) of the drug or radiotherapy
• the way you have a drug – as tablets or capsules, or by injection
• your general health
• your age

Many people are worried about the possible side effects of treatment. All treatments cause some side effects. But side effects vary from one person to another.

Treatments for leukaemia are continuing to improve. This means that more people are surviving with fewer side effects. There are medicines to help control most side effects that happen during or straight after treatment. Many of these effects stop when the treatment ends.

Side effects might be short or long term.

This section is about ALL in adults. We have separate information about childhood ALL.

Short term side effects

Short term side effects happen when you have the treatment or very soon after you finish. The side effects depend on which treatments you have.

Some common side effects of treatment include:

• an increased risk of infection
• breathlessness and looking pale
• tiredness and weakness
• bruising, bleeding gums or nosebleeds
• feeling or being sick
• difficulty eating
• sore mouth and ulcers
• taste changes
• diarrhoea
• constipation
• hair thinning and loss
• changes in how your heart words
• less interest in sex
• periods stopping
• breakdown of tumour cells (tumour lysis syndrome)

An increased risk of infection

ALL and its treatment can cause a drop in the number of white blood cells. White blood cells are very important and helping fight infection.

Neutrophils are a particular type of white blood cell that have an important role in fighting infection. Having a very low number of neutrophils is called neutropenia. 

If you have neutropenia you are at risk of developing a serious condition called neutropenic sepsis. This can be life threatening. This is more likely to happen with chemotherapy and other treatments that lower the immune system. 

After your treatment it may take some time to build up your body’s ability to fight infection. After a stem cell transplant it usually takes between 6 months to a year for your immune system to recover.

The symptoms of infection include:

• a sore throat

• a high temperature

• pain when passing urine

• a cough or breathlessness

• flu-like symptoms, such as aching muscles, tiredness, headaches, and feeling shivery

People shouldn't visit you in hospital or at home if they have any kind of infection. Your healthcare team will let you know if you need to avoid very crowded areas where the risk of picking up an infection is greater. Once the level of your white blood cells recovers, you may be able to socialise  more.

After a stem cell transplant, you need to have your vaccinations again. Each hospital has their own guidelines about when to vaccinate following a transplant.

You usually have antibiotic, antifungal and antiviral medicine while having chemotherapy to prevent you from getting an infection. You may also have a medication called a growth factor if your white blood cell count is low. You usually have this as an injection just under the skin.

Breathlessness and looking pale

Treatment can cause a low number of red blood cells. Red blood cells contain haemoglobin which carries oxygen around the body. If the level of haemoglobin in your blood is low this is known as anaemia. You may can feel very tired. You may also become breathless because the amount of oxygen carried around your body is lower. Some cancer drugs can make you anaemic.

You can have a blood transfusion if your red blood cells are very low. After a transfusion you will feel more energetic, less tired and less breathless. Some people worry they may get an infection from a blood transfusion. All blood is now very carefully screened before it is used. The chances of getting an infection from a transfusion are tiny.

Bruising, bleeding gums or nosebleeds

ALL and its treatment can cause a low number of platelets. Platelets help to clot the blood to prevent bleeding.

If the number of platelets in your blood is low, you may:

• bruise easily

• bleed more than usual, even from small cuts or grazes

• have nosebleeds

• have a rash of small purple or red dots

The rash is called purpura and is caused by bleeding within the skin.

If your platelet count is very low, you need to have a platelet transfusion in hospital. You have a drip of a clear fluid containing platelets into your vein. The new platelets start to work right away.

If you still have periods, you will have medicine to stop them. This is to help lower the risk of bleeding problems.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treating it once it has started.

Tips:

• Avoid eating or preparing food when you feel sick.

• Avoid hot fried foods, fatty foods or foods with a strong smell.

• Eat several small meals and snacks each day.

• Relaxation techniques help control sickness for some people.

• Ginger can help – try it as crystallised stem ginger, ginger tea or ginger ale.

• Sip high calorie drinks if you can’t eat.

• Try fizzy drinks.

Difficulty eating and drinking

Cancer treatments can affect your appetite and cause problems with eating, drinking and digestion.

There may be times when you won’t have much of an appetite. Try small meals throughout the day and eat whenever you feel like it. Your dietitian will give you high calorie drinks if you can't eat much. Some people having more intensive treatment might have liquid nutrition through a tube into their tummy or through your central line.

Sore mouth and ulcers

Some treatment for ALL can change the cells in the lining of your mouth, making it inflamed and sore (mucositis). You may develop mouth ulcers. This can happen several days after you start treatment. It usually gradually clears up 3 to 4 weeks after your treatment ends.

Tell your doctor or nurse straightaway if your mouth is painful and if you have mouth ulcers. They will talk you through how to look after your mouth and keep it clean. Some people need strong painkillers to help control mouth pain so that they can eat and drink.

Sometimes mouth ulcers can get infected. Your doctor or nurse can give you treatment for this. If you are having drugs that are known to cause mouth ulcers, your nurse may give you mouth washes to help prevent infection. You have to use these regularly to get the most protection.

Tips:

• Keep your mouth and teeth clean with a soft toothbrush.

• Talk to your doctor or nurse about flossing.

• Avoid mouth washes that contain alcohol, your doctor may give you a mouthwash that can help with pain and inflammation.

• Drink plenty of fluids.

• Eat soft, moist foods and avoid food and drinks that irritate your mouth including alcohol.

• Avoid acidic foods such as oranges, lemons and grapefruits.

• Use lip balm and chew gum to keep your lips and mouth moist.

Taste changes

Some cancer drugs can make food taste strange or may give you a metallic taste in your mouth. Food may taste:

• salty

• bitter

• metallic

Your taste usually gradually goes back to normal when your treatment is over, but it may take a few weeks.

Diarrhoea

Diarrhoea is when you need to poo more often than you usually do in one day. And your poo is more loose and watery than usual. You can become dehydrated if you have severe diarrhoea. So it’s important to drink plenty of fluid. Ask your healthcare team whether you need to make any changes to your diet. 

You may also want to apply soothing cream around your back passage (anus). The skin in this area can get very sore and even broken if you have severe diarrhoea.

Constipation

Constipation is easier to sort out if you treat it early. Drink plenty of fluids and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your doctor or nurse if you are constipated for more than 3 days. They can prescribe a laxative.

Hair thinning and loss

Some cancer drugs may cause:

• mild thinning of your hair
• partial hair loss or loss of patches of hair
• complete hair loss (alopecia)

Generally, chemotherapy is the type of cancer drug treatment most likely to cause hair loss or hair thinning. It is also a possible side effect with some targeted and immunotherapy drugs. Whether you will have this depends on: 

• the type of drug or combination of drugs you have
• the amount (dose)
• your individual sensitivity to the drug
• your drug treatment in the past

If your hair is going to fall out, it usually begins within 2 to 3 weeks after treatment starts. It usually falls out gradually rather than suddenly. 

The good news is that your hair will grow back once your chemotherapy treatment has finished. This may take 4 to 6 months. It might come back a different colour and may be more curly than before. 

Changes in how your heart works

Some cancer drugs can affect the way that your heart works. The drugs most likely to affect your heart are some chemotherapy drugs. The effect may be temporary but can sometimes be permanent.

Your doctor checks how well your heart works before you start treatment as well as during and after treatment ends.

Periods stopping

Women might stop having periods (amenorrhoea) but this may be temporary.

Less interest in sex (low libido or sex drive)

Cancer drugs might lower your sex drive for a while. They can also be due to other reasons such as:

• tiredness
• stress and anxiety about having ALL 
• loss of confidence and self esteem 

Your sex drive will usually go back to normal sometime after the treatment ends. Let your nurse or doctor know if this is worrying you.

Breakdown of tumour cells (tumour lysis syndrome)

Tumour lysis syndrome (TLS) can be a serious complication of having cancer drugs for leukaemia. It can happen when the drugs kill large numbers of cancer cells very quickly.

When the body breaks down these dead cells they release large amounts of substances into the bloodstream. This can cause problems with your kidneys, heart and other areas of the body.

You will have frequent blood tests to closely monitor the level of:

• uric acid

• potassium

• phosphate

• calcium

If you are at risk of tumour lysis syndrome, you usually have:

• extra fluids as a drip into your bloodstream

• medications such as allopurinol or rasburicase to help keep the levels of uric acid in your blood stable

You are at higher risk of developing tumour lysis syndrome if you have a very high white blood cell count at diagnosis. The risk is greater at the beginning of treatment.

Your healthcare team will explain this to you before you start treatment.

Possible long term side effects

You might develop long term side effects weeks, months or years after treatment has ended.

Some of these include:

• heart problems
• not being able to have children (infertility )
• early menopause  
• developing another type of cancer 
• bone problems
• diabetes
• cognitive changes (chemo brain)
• lung problems
• thyroid problems
• clouding of the eye lens (cataracts)

Different types of treatment cause different problems. And doctors can't tell who will get a long term side effect and who won't.

Because treatments have improved over the years, the treatment that people have now is less likely to cause long term problems than treatment in the past.

Coping with side effects

It can be difficult to cope with ALL and its treatment. There are medicines to help reduce side effects and other ways to help relieve them. There are also people who can support you and help you with the practical and social effects of ALL.

Some people find that talking through these issues can help them to cope.

Keeping as healthy as possible can help to reduce the chance of some problems developing. This includes not smoking, eating a well balanced diet, keeping a healthy weight and doing regular physical activity.

Talk to your healthcare team about any symptom that worries you. You don't have to wait for your next appointment.