Long term side effects of treatment for acute lymphoblastic leukaemia (ALL)
After some types of leukaemia treatment you might develop long term side effects weeks, months or years after the treatment has ended. Different types of treatment cause different problems. And 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
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.
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 
or . 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 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 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 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)
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. So do talk to your doctor or specialist nurse for help.
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.
Researchers are trying to find out:
- what causes chemo brain
- how health professionals and people with cancer can best manage the symptoms of cognitive impairment
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 shortness of breath
- flu-like symptoms such as aching muscles, tiredness, headaches, and feeling shivery
After a transplant, you need to have your vaccinations again. Each hospital has its own guidelines about when to vaccinate following a transplant.
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 may feel like there are flutters
- 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.
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
You are less likely to have radiotherapy to your brain as part of your leukaemia treatment these days.
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
Loss of blood supply to the bone
Loss of the blood supply to the bone is called avascular necrosis. The bone tissue dies making the bone weak and more likely to collapse. Avascular necrosis can be a side effect of long term or high dose steroid treatment. It happens most often in the hip bones.
Lung problems
Some people develop inflammation of their lungs after a transplant for leukaemia, but this is rare. 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. 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. 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.
