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Long term side effects of treatment for acute myeloid leukaemia (AML)

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.

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:

  • tiredness
  • swollen ankles
  • palpitations - your heart feeling 'fluttery'
  • breathlessness or chest pain
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 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
  • 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

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.

You can talk through late effects with the Cancer Research UK Nurses. You can call them on 0808 800 4040, lines are open Monday to Friday 9 to 5.

Research

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.

Last reviewed: 
29 Jun 2016
  • Late effects in long-term survivors after treatment for childhood acute leukemia
    TB Haddy and others
    Clinical Pediatrics Philadelphia, 2009, Volume 196, Issue 8

  • Improving Outcomes in Children and Young People with Cancer
    National Collaborating Centre for Cancer, 2005

  • Long-term follow-up of survivors of childhood cancer
    AB Edgar and others
    Endocrine Development, 2009. Volume 15

  • Long term follow up of survivors of childhood cancer
    Scottish Intercollegiate Guidelines Network, 2013

  • Risk of second malignant neoplasms after childhood leukemia and lymphoma: an international study
    M Maule and others
    Journal of the National Cancer Insitute, 2007, Volume 99, Issue 10

  • Therapy based long term follow up
    United Kingdom Children's Cancer Study Group, Late Effects Group
    April 2005

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