After treatment for acute lymphoblastic leukaemia

After treatment for ALL, you’ll have regular check-ups. These will go on for several years. If you have any problems between check-ups, tell your hospital doctor as soon as possible.

You will also have blood tests, and maybe other tests as well, to check that no leukaemia cells have returned. If ALL comes back, you may be given further treatment.

If leukaemia is on your mind and you are feeling anxious, you can:

  • ask your doctor or nurse about what support is available
  • prepare questions to ask your medical team, and take someone with you to check-ups
  • make sure you take your medications as prescribed
  • talk openly to friends, family members or a support group
  • try complementary therapies (check with your specialist doctor or nurse first).

It’s important to:

  • have a healthy, balanced diet and take care with food hygiene
  • take your doctor’s advice about vaccinations
  • avoid crowded places and stay away from children who have infectious diseases
  • talk to your medical team about holiday, work and education plans
  • take regular, gentle exercise (ask your specialist what activity is suitable for you).

Follow-up after treatment for ALL

Once your treatment is completed, you’ll have regular check-ups.

These will continue for several years. Many people find that they get very anxious before the appointments. This is natural. It may help to get support from family, friends or one of the organisations in our database.

If you have any problems, or notice any new symptoms between appointments, let your hospital doctor know as soon as possible.


Tests

Samples of blood will be taken regularly throughout your follow-up to check your general health and the number of normal cells in the blood. Depending on the type of treatment you’ve had, you may also have bone marrow biopsies taken to check that no leukaemia cells have returned.

Your doctor will examine you and ask you about how you have been feeling and any side effects you may still be experiencing. Occasionally you may need other tests such as x-rays.


What if the ALL comes back?

For some people, ALL can come back after a period of remission. If this happens, further treatment can be given. For some people, the chemotherapy drugs used during the induction phase may be repeated. Others may be offered newer targeted therapies, such as blinotumumab. However, for others, the leukaemia may be resistant to these drugs, so different drugs or new combinations of drugs may be needed. With further treatment a second remission may be possible.

Sometimes treatment will only be able to control the leukaemia. In this case the aim of treatment will be to reduce symptoms and improve quality of life for as long as possible.


What you can do

There may be times when you feel the leukaemia is on your mind all the time. It can also feel as though many things are happening outside your control. You may find that once you have dealt with some of your worries you will feel less anxious.

There are some things you can do that may help:

  • Talk to your specialist doctor or nurse for information about what support is available at your treatment centre or in your local area. There are sources you can turn to for practical advice, medical information, emotional support or spiritual comfort. You can also talk things through with one our cancer support specialists.
  • Get the most out of meetings with your medical team. It can help to prepare some questions you might like to ask, and have a friend or family member with you. Your doctor or specialist nurse will usually be able to answer most of your questions. Your worries about things like how leukaemia may affect your daily life or which symptoms you might have may be eased by knowing more about them.
  • Remember to take medications as prescribed. This might be treatment for the leukaemia, or medicines to help prevent or reduce symptoms or side effects of treatment.
  • Try to identify a few key people you can talk openly to and ask anything. They could be parents, grown-up children, close friends or colleagues, neighbours, or someone from a local carers’ or cancer support group.
  • Complementary therapies can be a good way of helping you cope with some of the stresses caused by leukaemia and its treatments. Some complementary therapies may not be suitable if you have leukaemia or may not be suitable to use with certain treatments. It’s important to talk to your haematologist or specialist nurse before you have any complementary therapy. It’s also important to tell your complementary therapist that you have leukaemia.


Life after treatment

You may find it helps to try to carry on with life as normally as possible, by staying in contact with friends and keeping up your usual activities. Or you may want to decide on new priorities in your life. This could mean spending more time with family or going on holiday.


Your diet

For the first few months while your immune system is returning to normal, it helps to try to eat a healthy, balanced diet and to avoid possible risks of infection from food. Eat freshly cooked food and avoid reheated food. Make sure that frozen foods are completely defrosted before cooking, and wash salads and fruit thoroughly before eating. Once your blood count is back to normal, you can usually eat whatever you like.

It is fine to drink a small amount of alcohol, but heavy drinking can slow down your recovery and increase the risk of bleeding (especially if your platelet count is low). Alcohol can also interfere with some of the drugs you may be prescribed.


Vaccinations

After treatment, or if you are having maintenance therapy, your doctor will suggest you have vaccinations against common illnesses such as flu. They may also suggest that the people you live with have the flu vaccine and keep up with other routine vaccinations.

If you’ve had a donor stem cell transplant, you’ll lose your immunity to any illnesses you were vaccinated against as a child. You’ll need to have these vaccinations.

There are some types of vaccines (live vaccines) that you’ll need to avoid until your immune system is back to normal. If you have young children, they should avoid the flu vaccine that’s given as a spray through the nose. This is because it’s a live vaccine. Talk to your haematology doctor or specialist nurse about which vaccinations are safe to use.


Socialising

To reduce the risk of infection, avoid crowded places such as cinemas, pubs and public transport until your white blood cells are within the normal range. Your doctor can tell you what your blood count is.

How quickly you take up your full social life again will depend on the treatment you have. For people having maintenance treatment this may be about 3 to 6 months after treatment. But if you’ve had a stem cell transplant it may take longer.

Avoid contact with children who have an infectious disease such as chickenpox or measles. If you’re worried that you’ve come into contact with someone with an infectious disease, contact your doctor or specialist nurse.


Holidays and travel

It’s a good idea to talk about any holiday plans with your doctors. For the first few months after treatment, some people may still have to attend hospital regularly for check-ups and may sometimes need transfusions. If you are having maintenance treatment over a number of years, you may be able to take a holiday during this time. If you’ve had a stem cell transplant it would be best not to plan any holidays until six months after treatment has finished. You’ll usually be advised not to travel abroad in the first year after a transplant unless there’s a cancer treatment centre nearby.

Remember to ask your doctor for advice on travel and discuss any vaccinations needed. It’s also important to make sure you have travel insurance.


Keeping physically active

Regular gentle activity (such as walking) is a good way to help build up energy levels. Exercise has also been shown to help reduce stress and anxiety.

You’ll have to be careful if your platelets, which help the blood to clot, are low. If you have low numbers of red cells (anaemia), you’ll feel very tired and sometimes breathless. Ask your specialist about what kind of exercise is suitable for you when your blood count is still recovering.


Going back to work, school or college

Many people go back to work, college or school while they are on maintenance treatment. If you have a stem cell transplant you may be encouraged by your doctors to wait until your blood count has gone back to normal or almost normal. Ideally, take it gradually by going part-time to begin with. It’s a good idea to discuss with your employer, teacher or tutor a satisfactory way of returning to your work or education in stages.

You might also want to say whether you would like them to talk to your colleagues or fellow students about your illness and treatment before you return. If so, check that you feel comfortable about the way they plan to do this.

Back to Care after treatment

Your care

After your treatment ends you will receive follow-up care from your healthcare team and you may have tests and scans to check your health.