Long term side effects of ALL treatment
This page tells you about the possible long term effects of treatment for acute lymphoblastic leukaemia (ALL). There is information about
Long term side effects can develop months or years after you had treatment and may be permanent. Different types of treatment for leukaemia cause different problems. Not everybody gets long term side effects. Your risk of developing any effect depends on different factors including the type of treatment you had and the dose of those treatments.
Tiredness (fatigue) is the most common problem after cancer treatment and is especially likely in people who have had a bone marrow transplant or stem cell transplant. You are also likely to have lowered resistance to infection for at least 6 months to a year after your transplant.
People treated for ALL after puberty will probably be unable to have children (infertile).
Other less common long term effects include thyroid problems, lung problems, heart problems and clouding of the lens of the eye (cataract). There is a small risk of getting another cancer because of your treatment but this is rare.
Children can have growth problems because the treatment changes their hormone levels.
You can view and print the quick guides for all the pages in the treating ALL section.
You can get side effects when you have any medical treatment. But with some types of leukaemia treatment, you may develop long term effects weeks, months, or years after the treatment has ended. The effects may last for a long time or may be permanent. The effects may include not being able to have children (infertility), growth problems, or treatment related tiredness (fatigue). Some long term effects affect nearly everyone who has a particular type of leukaemia treatment – for example, fatigue. Other effects are very rare.
Different types of treatment for leukaemia cause different problems. Not everybody gets long term side effects. Your risk of developing any effect depends on the type of treatment you had, the dose of those treatments and, to some extent, the age you were when you had treatment.
Unfortunately, doctors can’t tell who will get a long term effect and who won’t. But it is important to talk over with your cancer specialist which side effects are possible after your type of treatment. Your doctor can also advise you about the tests and check ups you should have in the years after your treatment ends.
Below we have listed the possible long term effects after treatment for acute leukaemia.
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. We list the possible long term effects of treatment below.
Fatigue is a feeling of extreme tiredness and weakness. It 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 or stem cell transplant. Fatigue can be difficult and frustrating and it is likely to affect your quality of life.
Many people don’t tell their doctor that they have fatigue. This is usually because they think that nothing can be done to help. Or they think it is just part of treatment and they need to put up with it. This isn’t true. 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. For example research has shown that light to moderate exercise can help you feel better and give you more energy.
Have a look in our section about fatigue for detailed information about the causes of fatigue and how to manage it. Getting some help with fatigue is important. If you have it for long periods of time it can make you feel very low, which in turn can make the fatigue worse.
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 – 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 will have their own guidelines about when is the best time to vaccinate with a live or inactive vaccine following a transplant.
Your risk of not being able to have children depends on the following things.
- Which treatment you have
- The dose of treatment
- Your age when you have treatment
If you have had whole body radiation as part of a transplant, it is almost certain that you will not be able to have children afterwards. There are some reports though of people who have had a transplant and gone on to have children. So, it is important to talk to your doctor about your fertility before you start the treatment.
Chemotherapy can also affect fertility. To find out if your chemotherapy drugs might cause infertility, have a look in the individual cancer drugs pages. 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.
There is detailed information about fertility in the living with acute lymphoblastic leukaemia section.
Heart problems are a rare late side effect for people who have had treatment for acute leukaemia. This side effect can develop a few months into treatment or some years after treatment has finished. Treatments that may cause this are
- Anthracyline chemotherapy drugs such as doxorubicin and daunorubicin
- Alkylating chemotherapy drugs such as cyclophosphomide
- Radiotherapy to the whole body for acute lymphoblastic leukaemia (also called total body irradiation or TBI)
- Radiotherapy to the centre of the chest (mediastinal radiotherapy)
If you are at risk of heart problems you will have regular check ups. Possible symptoms to look out for are tiring easily, swollen ankles, palpitations, and breathlessness or chest pain when you move about.
If you have radiotherapy to your brain, or total body irradiation (TBI), as part of a stem cell or bone marrow transplant, there is a small risk that it may affect your thyroid gland. The thyroid gland normally makes a hormone called thyroxine. If your levels of thyroxine drop you will develop symptoms such as lack of energy, constipation, weight gain, and feeling cold more easily.
You will need to have yearly thyroid tests and may need to take thyroxine supplements.
Second cancers after treatment for ALL 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. If you become breathless tell your doctor.
Some other problems can affect your quality of life. 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.
Some people may have thinning of the bones (osteoporosis) due to TBI, steroid treatment or 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. Doctors use radiotherapy to the brain less often now. So low bone density may not be a problem for children having treatment now.
We know from research that some people have mild mental difficulties after chemotherapy. They may have difficulty in concentrating, or understanding and remembering things. Many patients (and some doctors) call this chemo brain. It is often difficult to tell whether there is a problem with concentrating or understanding things because changes may be too mild to show up on any tests. The reported effects vary from person to person. But people sometimes say they are not as quick at mental arithmetic, or they have trouble remembering shopping lists, for example. There is information about chemo brain in our question and answer section.
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. Children may also have puberty later than normal.
The doctor will talk about the possible risks depending on the treatment you or your child had. You will be closely monitored so that any problems can be treated early. If your specialist thinks there is a problem, you may need to see a doctor called an endocrinologist who specialises in hormones.
In March 2013 the Scottish Intercollegiate Guidelines Network (SIGN) produced guidelines about how children should be followed up after childhood cancer. There are recommendations about who should be involved in monitoring the child as they grow into their adult life. In 2008, the Children’s Cancer and Leukaemia Group (CCLG) produced information to guide doctors on how best to follow children up.
It is not easy to cope with problems that develop after treatment for leukaemia. It can seem very unfair that you not only have to cope with the diagnosis and treatment, but you may have other problems because of it.
Some people find it helpful to understand more about their risk of developing these problems. You may want to find out what to look out for. Talk to your doctor or specialist nurse about possible late side effects before you have treatment. It may help to know what your follow up will involve.
Contact your doctor or nurse if you have any symptoms that worry you. You don’t have to wait until your next follow up appointment if that is a long way off.
Keeping as healthy as possible can help to reduce the chance of some problems developing. This includes not smoking, eating a healthy, well balanced diet, exercising regularly, and maintaining a healthy weight.
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.
Researchers are looking into the long term effects of treatment for all types of childhood cancer. The Centre for Childhood Survivor Studies is carrying out the British Childhood Cancer Survivor study. This research is looking at children who were diagnosed with cancer between 1940 and 1991 and survived at least 5 years. This type of research takes many years to produce results because the children need to be followed throughout their lives. So it will be some time before we know the results of this research.
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