Find out about the long term side effects of treatment for acute lymphoblastic leukaemia (ALL) and how to cope with them.
After some types of leukaemia treatment you might develop long term 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 treatment dose
- 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.
Possible side effects
Your risk of not being able to have children depends on:
- which treatment you have
- the dose of treatment
- your age when you have treatment
It is almost certain that you will not be able to have children after whole body radiation as part of a transplant. There are some reports of people who have had a transplant and gone on to have children. So it's important to talk to your doctor about fertility before you start treatment.
Chemotherapy can also affect fertility. This depends on what chemotherapy treatment you are having. Most adults who have chemotherapy for acute leukaemia will become infertile.
Women who had treatment as a child may have an earlier menopause than other women. So they may need to think about planning a family at a younger age than they otherwise would. Your doctor will tell you or your child if there is a risk of this happening.
Boys and men may stop producing sperm. This may be temporary or permanent. Even if you are producing no sperm at all after treatment, you may start again months or even years later. If you don’t want to father a child, it is important to use contraception if there is any doubt about whether you are producing sperm.
Second cancers after ALL treatment are rare. But because there is a very small possibility of developing a second cancer in the future, you will be monitored for some years after treatment.
Some people develop inflammation of their lungs after a transplant for leukaemia but this is rare. Tell your doctor or nurse if you become breathless.
Some people develop clouding of the lens of the eye some years after total body radiotherapy (TBI). The clouding is called a cataract. Doctors treat this by removing the clouded lens and replacing it with a man made lens.
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 bone marrow transplant or stem cell transplant. Fatigue can be difficult and frustrating.
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. Getting some help with fatigue is important. It can make you feel quite low if you have it for long periods of time, which can make fatigue worse.
For example we know from research that light to moderate exercise can help you feel better and give you more energy.
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.
Contact your doctor if you have any symptoms that suggest you might have an infection. 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 or bone marrow transplant, both adults and children need to have their vaccinations again. Each hospital has their own guidelines about when to vaccinate following a transplant.
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:
- anthracycline chemotherapy drugs such as doxorubicin and daunorubicin
- alkylating chemotherapy drugs like cyclophosphamide
- total body radiotherapy
- 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:
- swollen ankles
- palpitations - your heart feeling 'fluttery'
- breathlessness or chest pain when you move about
There is a small risk of your thyroid gland being affected if you have brain or total 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
- be gaining weight
- feel the cold more easily
You have yearly thyroid tests and might need to take thyroxine supplements.
Some people have changes in their memory and concentration after chemotherapy. These changes are called mild cognitive impairment (MCI) or cognitive dysfunction. Some people call them 'chemo brain' or 'chemo fog'.
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)
- 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
Some people might have thinning of the bones (osteoporosis) due to:
- steroid treatment
- lower levels of hormones
Leukaemia treatment always used to include radiotherapy to the brain, which lowers the levels of some hormones that maintain bone strength. Research looking at children after leukaemia treatment suggests that some have lower bone density. We need more research to find out if this leads to an increased risk of fractures later in life.
You are less likely to have radiotherapy to your brain as part of your leukaemia treatment these days.
Problems specific to children
As well as the possible side effects listed above, there are particular effects in children treated for leukaemia.
A transplant in childhood may cause delayed growth due to lower growth hormone levels. Doctors or specialist nurses keep a close eye on children during check ups to make sure they are growing normally. You might need to see a doctor called an endocrinologist who specialises in hormones.
Children may have puberty later than normal.
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 exercising regularly.
Talk to your treatment team about any symptom that worries you. You don't have to wait for your next appointment.
As treatment improves and people survive longer we are finding out more about possible late effects. This is a relatively new and developing area of research. Treatments have improved, more people are cured, and many people now live for much longer after having cancer. So we are only just finding out what effects treatments may have years later.
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 research will look back at people who had treatment some years ago. So what you read about side effects now may not necessarily apply to treatment you are having now.