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.
Possible side effects
Unfortunately most of the treatments for ALL can affect fertility. So it's important you talk to your doctor about fertility before you start treatment.
It is almost certain that you will not be able to have children after whole body radiation as part of a transplant. However, there are some reports of people who have had a transplant and gone on to have children.
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 you may need to think about planning a family at a younger age than you otherwise would.
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's important to use contraception if there is any doubt about whether you are producing sperm.
Your GP or cancer specialist can refer you to a fertility specialist if you have any questions about your fertility.
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.
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's 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.
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.
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.
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.
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, 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:
- 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 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.
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:
- whole body radiotherapy
- 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.
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
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.
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.