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

After some types of leukaemia treatment, you might develop long term side effects. This could be weeks, months or years after the treatment has ended. Different types of treatment cause different problems. Unfortunately doctors can't tell who will get a long term effect and who won't. 

Your risk of developing any effect depends on:

• the type of treatment you had

• the amount (dose) of treatment

• your age when you had treatment

Go to our cancer drug A to Z list to read about the possible side effects of specific cancer drugs you are having.

Remember that not everyone will have these effects and having one doesn’t mean that you will develop the others.

There are differences between the effects that adults have compared to children. There is less information about adults because acute leukaemia is rarer in adults. But generally, there are fewer long term effects in adults compared with children with ALL.

Possible long term side effects include:

• problems with infertility

• tired (fatigue)

• cognitive changes (chemo brain)

• low resistance to infection

• heart problems

• second cancer

• bone problems

• diabetes

• lung problems

• thyroid problems

• clouding of the eye lens (cataract)

Fertility after leukaemia treatment

Treatment for leukaemia can make it harder for you to get pregnant or father a child in the future. But there are many people who have leukaemia treatment that do keep their fertility. Before treatment, your doctor will talk to you about your risk of infertility. They can also refer you to a fertility specialist who can give you more information and support.

At the end of treatment, you usually have checks to see how treatment has affected your fertility. They check:

• the quality and number of sperm if you are male
• certain hormone levels
• your ovaries, womb (uterus) and fallopian tubes if you are female – you have an ultrasound scan to check this

You are at a higher risk of permanent infertility if you have had a stem cell or bone marrow transplant . If you have a partner, you may want to see your doctor together so that you can both discuss any fears or worries. Don’t be afraid to ask questions. Being well informed can help you cope.

Men and infertility

Chemotherapy might affect a man’s fertility by:

• reducing the number of sperm you make
• affecting the ability of the sperm to fertilise an egg

This might be temporary or might mean you can no longer father a child.

Women, infertility and early menopause

Chemotherapy and radiotherapy are some examples of the treatments you might have for ALL that can affect your fertility. They work by stopping the ovaries from producing eggs. If this happens, you won’t be able to become pregnant. It can also cause you to have an early menopause.

The menopause is normally the period of time between the early 40s and late 50s when women stop producing sex hormones  and their periods become irregular and eventually stop. Women can then no longer become pregnant.

Some of these symptoms of menopause include:

• hot flushes and sweating
• vaginal dryness
• feeling sad or depressed
• loss of confidence and self esteem
• joint pains and muscle aches and you may have thinning and weakening of the bones (osteoporosis) over time
• loss of interest in sex (libido)

Talk to your doctor or nurse if you have any of these symptoms. There are treatments and things you can do to help cope with the effects of menopause. Your doctor might recommend you have hormone replacement therapy (HRT) if you have an early menopause.

Preserving fertility

There are ways for women and men to try to keep their fertility, such as freezing eggs and sperm collection. But this depends on several factors.

For women, this isn't usually possible to do, as treatment for leukaemia often needs to start quickly after diagnosis. Freezing eggs, for example, takes several weeks, as you have drugs to stimulate your ovaries to make eggs. The doctor then has to collect and store these eggs. Men might be able to collect and have their sperm stored. This is called sperm banking. This generally depends on how well you are and how quickly treatment needs to start.

Talk to your doctor or nurse about any concerns you may have about your fertility. 

Contraception

It is still important to use contraception during treatment and for some time after. Your doctor, nurse or pharmacist can tell you how long this should be for. Becoming pregnant or fathering a child during and shortly after treatment may affect the developing baby.

If you don’t want to have a baby, you should continue to use contraception after treatment until you know for certain that you are infertile.

Tiredness (fatigue)

Long lasting tiredness (fatigue) is the most common side effect of treatment for cancer. For most people it gradually gets better over time. But for some 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. And it can make you feel quite low if you have it for a long time, which in turn can make your fatigue worse. If fatigue is a problem for you talk to your doctor or specialist nurse.

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. Some research has shown that light to moderate exercise can help you feel better and give you more energy.

Cognitive changes (chemo brain)

After cancer treatment, some people notice changes in their memory, concentration and the way they think. These changes are called mild cognitive impairment (MCI) or cognitive dysfunction. Some people call them 'chemo brain' or 'chemo fog'.

It's not clear exactly what causes these memory and concentration changes in people with cancer. So calling them chemo brain may not be accurate.

It's possible that these problems might be due to other cancer treatments. Or more recent research has shown that some people with cancer have similar problems before they start any treatment. So these changes could be due to the cancer itself.

Symptoms can include:

• memory loss – forgetting things that you normally remember

• difficulty thinking of the right word for a particular object

• difficulty following the flow of a conversation

• trouble concentrating or focusing on one thing

• difficulty doing more than one thing at a time (multi tasking)

• more difficulty doing things you used to do easily, such as adding up in your head

• confusion

• mental fogginess

Tips:

• Try to keep life simple if possible.

• Avoid trying to do too many things at the same time.

• Use lists to help you remember things.

• Try to talk to people somewhere quiet with few distractions.

• Follow a healthy diet, and get some exercise and plenty of rest.

• Keep your mind active – for example, doing crosswords, sudoku and puzzles.

Low resistance to infection

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 (GvHD) it can take even longer than this.

Contact your doctor or specialist nurse if you have any symptoms that suggest you might have an infection. The symptoms of infection include:

• a sore throat

• a temperature that is higher or lower than normal

• 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.

Heart problems

Heart problems are a rare late effect after treatment for acute leukaemia. They can develop a few months into treatment or some years after treatment ends. Treatments that can cause this are:

• types of chemotherapy drugs called anthracyclines, such as doxorubicin and daunorubicin

• types of chemotherapy drugs called alkylating agents, such as cyclophosphamide

• whole body radiotherapy (also called total body irradiation or TBI)

• radiotherapy to the centre of your chest

You will have regular check ups if you are at risk of heart problems. 
Things to look out for are:

• tiredness

• swollen ankles

• palpitations - your heart feeling "fluttery"

• breathlessness or chest pain when you move about

Second cancer

Developing another type of cancer (a second cancer) is rare. But because there is a small possibility of developing a second cancer in the future, your doctor will monitor you for some years after treatment.

The risk of developing a second cancer is slightly increased after having whole body radiotherapy as part of a stem cell transplant.

Bone problems

Thinning of the bones (osteoporosis)

Some people might have thinning of the bones (osteoporosis) due to:

• whole body radiotherapy

• steroid treatment

• lower levels of hormones

Loss of blood supply to the bone

A loss of the blood supply to the bone is called avascular necrosis or osteonecrosis. The bone tissue dies and weakens the bone. This can cause joint stiffness, pain and damage.

Avascular necrosis can be a side effect of prolonged steroid or chemotherapy treatment. It happens most often in the hip bones. However this is more common in people aged under 20.

Diabetes

This is when your blood sugar levels become too high.

There is a very small risk that you can develop diabetes later in life after having whole body radiotherapy for a transplant. The radiotherapy can cause damage to the pancreas that is responsible for controlling your blood sugar levels

Tell your doctor if you have any symptoms of diabetes. These include:

• feeling very thirsty
• feeling very tired
• losing weight
• feeling hungry
• cuts or wounds that heal slowly
• blurred vision
• weeing more than usual, particularly at night

Lung problems

Some people develop inflammation of their lungs after a stem cell transplant for leukaemia, but this is rare. This can happen if you had GvHD or if you had a lot of infections during or after your treatment.

You may feel breathless or develop a long term cough. Tell your doctor or nurse if you develop these symptoms.

Thyroid problems

There is a small risk of your thyroid gland being affected if you have brain or whole body radiotherapy. Some immunotherapy drugs can also cause thyroid problems.

The thyroid gland normally makes a hormone called thyroxine. If your levels of thyroxine drop you might:

• have a lack of energy

• be constipated

• gain weight

• feel the cold more easily

You have regular thyroid tests and might need to take thyroxine supplements.

Clouding of the eye lens (cataract)

Some people develop clouding of the lens of the eye some years after whole body radiotherapy and steroids. This is called a cataract. Doctors treat this by removing the clouded lens and replacing it with a man made lens.

Coping with late effects

It can be difficult to cope with problems that develop after treatment. You might feel that it's very unfair to have to cope with side effects as well as the leukaemia and its treatment.

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

It can also help to know about the risk of developing late effects. Ask your specialist doctor or nurse about possible side effects.

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.

Research

As treatment improves and people survive longer we are finding out more about the late effects.

Research into new treatments looks at reducing side effects as well as trying to increase the number of people who survive. Because research takes a long time to carry out, any published studies will look back at people who had treatment some years ago. So what you read about side effects may not necessarily apply to treatment you are having now.