Find out about the long term side effects of treatment for acute myeloid leukaemia (AML) 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 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
Possible side effects
You might have one or more of these effects. Having one doesn't mean you will develop the others.
If you haven’t had children you might be worried about your fertility. Unfortunately, most of the treatments for AML are likely to make you infertile. So you won't be able to become pregnant or father a child afterwards.
Permanent infertility is almost certain if you have intensive treatment, such as a bone marrow transplant or stem cell transplant. Your doctor will tell you if it is likely you will become infertile. If you have a partner, you might want to see your doctor together so you can both discuss any fears or worries. Don’t be afraid to ask questions. Being well informed can help you cope.
Wome who had treatment for leukaemia as children may have an earlier menopause than other women. So you might need to think about planning a family at a younger age than you otherwise would. Your doctor will talk to you about this.
Research has found that people under 60 have a small increased risk of developing cancer after AML treatment.
If you are over 60 your risk of cancer is the same as the general population.
Some people develop inflammation of their lungs after a transplant for leukaemia but this is rare. If you become breathless tell your doctor or nurse.
These might include:
- clouding of the lens of the eye (cataracts)
- thinning of the bones (osteoporosis)
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.
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.
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.
There are various things you can do to try to avoid getting an infection.
- 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
- have a lack of energy
- be constipated
- be gaining weight
- feel the cold more easily
You have yearly thyroid tests and may 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)
- More difficulty doing things you used to do easily, such as adding up in your head
- Mental fogginess
- 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
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.
Researchers are interested in the long term effect of treatment for all types of childhood cancer. Ongoing research studies are monitoring children who have had cancer. The studies do regular checks on the children for the rest of their lives.