Short term side effects of treatment for acute myeloid leukaemia (AML)

Why you might have side effects

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 immediate or long term.

Immediate side effects

Immediate 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 for acute myeloid leukaemia include:

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

• medicines 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.

Tiredness with cancer

Fatigue (tiredness) is the most common side effect of treatment for cancer. For most people it gradually gets better over time. For some people it can be a longer term problem lasting several months or more. It is especially likely for people who have had a ​stem cell transplant​. Fatigue can be difficult and frustrating.

If fatigue is a problem for you, talk to your doctor or specialist nurse. There are lots of things that can help. First you may need tests to check that there isn’t an easily treatable cause of the tiredness, such as low ​thyroid​ hormone levels or ​anaemia​. If there isn’t a direct cause, your doctor and nurse can suggest other things that may help.

Low resistance to infection

AML and its treatment can cause a drop in the number of white blood cells. White blood cells are very important and help 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 transplant it usually takes between 6 months to a year for your immune system to recover. If you have ​graft versus host disease​ it can take even longer than this.

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

Children who have had treatment for leukaemia need to have their routine childhood vaccinations again. After a stem cell transplant, both adults and children need to have their vaccinations again. Each hospital has their own guidelines about when to vaccinate following a transplant.

People shouldn't visit you in hospital or at home if they have any kind of infection. Avoid very crowded areas where the risk of picking up an infection is greater. 

Low number of red blood cells (anaemia)

AML and its 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 can feel very tired. You may also become breathless because the amount of oxygen carried around your body is lower. Some chemotherapy 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.

Risk of bruising and bleeding

AML 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

AML treatment can cause sickness. It is usually well controlled with anti sickness medicines. Tell your doctor or nurse if you feel sick. You might need to try different anti sickness medicines to find one that works.

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.

• Try fizzy drinks.

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

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.

Find out more about sickness and cancer drugs

A sore mouth and ulcers

Some types of cancer drugs can cause changes in the lining of your mouth and make it very sore. Some of these drugs can even cause mouth ulcers. Inflammation of the inside of your mouth is called mucositis.

It can happen several days after you start treatment. It usually gradually clears up 3 to 4 weeks after your treatment ends.

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.

If your mouth is really sore, tell your doctor or nurse straight away. They can help to reduce the discomfort. Some people need strong painkillers to help control mouth pain so that they can eat and drink. With some drugs, some people even need to have morphine for a short time, because their mouths are so painful.

Find out more about your mouth and cancer drugs

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.

Find out about ways to help cope with taste changes

Changes to 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.

Find out more about cancer drugs and the heart

Hair thinning or loss

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. Complete hair loss is very unlikely with any other type of treatment. But some other cancer drugs can cause hair thinning. We can’t tell beforehand who will be affected or how badly. Some drugs are more likely to cause hair loss than others.

Hair loss also depends on other factors such as:

• the type of drug or combination of drugs you are taking

• 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. It might come back a different colour and may be more curly than before.

It will probably grow back at the same rate as it grew before chemotherapy. Within 4 to 6 months after your treatment ends, you should have a good head of hair.

Find out more about hair loss and cancer treatment

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 AML

• 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.

Diarrhoea

You might get diarrhoea from your treatment that can be quite severe. If you have bad diarrhoea, remember that you can easily become dehydrated. It is important to drink plenty. 

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.

Tell your doctor or nurse if the diarrhoea becomes severe or lasts for more than a couple of days.

Constipation

Constipation is easier to sort out if you treat it early. Tell your doctor or nurse if you are struggling to go to the toilet.

Drink plenty of fluids and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Your heal can prescribe a laxative.

Difficulty eating and drinking

You won't have much appetite just after your transplant. 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. Or you might have liquid nutrition through a tube into your tummy or through your central line.

More about coping with side effects

Coping with side effects

It can be difficult to cope with leukaemia 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 AML.

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

Coping with AML

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)

• developing another type of cancer

• thinning of the bones (osteoporosis)

• early menopause

• loss of blood supply to the bone (avascular necrosis)

• clouding of the eye lens (cataracts) can happen after an allogenic transplant

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.

Find out more about the long term side effects of AML treatment