Coping with treatment for acute leukaemia (leukemia)

It is important to look after yourself during treatment for acute myeloid leukaemia (AML) or acute lymphoblastic leukaemia (ALL), and while you recover. Some side effects may take weeks or months to improve, especially after intensive treatment. There are things you can do to manage some side effects and to improve your well-being.

We have separate advice on recovering if you had a stem cell transplant.

Usually, there is no medical reason to stop having sex during treatment for leukaemia. But if your platelets are low, your doctor may advise you to avoid penetrative sex until they recover. You are more likely to bleed if your platelets are low or to get an infection if your neutrophils are low. Your doctor or nurse can give you more information about this.

Leukaemia and its treatment cause physical and emotional changes that can affect your sex life. Side effects may mean you feel too unwell or tired for sex. You may also have changes such as hair loss that affect your body image and self-esteem.

Usually, difficulties slowly improve after treatment. If you have a partner, it can help to talk openly with them about how you feel. You may both need some time to adjust. If changes to your sex life do not improve, your specialist nurse can give you advice or arrange expert support if needed. We have more information about cancer and your sex life.

Even if your treatment is likely to damage your fertility, you may still be able to get pregnant or make someone pregnant. Drugs used to treat leukaemia can be harmful to an unborn baby. You should use contraception during your treatment and for several months after. Ask your doctor or specialist nurse for more information.

Leukaemia cannot be passed on during sex. But small amounts of chemotherapy or other drugs may get into your bodily fluids. This includes vaginal fluid and the fluid that carries sperm (semen). To protect your partner, your doctor may advise that during treatment and for a time after you:

• use a condom for vaginal or anal sex
• use a condom or a latex barrier such as a dental dam for oral sex.

This also helps protect you from sexually transmitted infections (STIs). This is important because your treatment can affect how your body fights infections.

While your white blood cell levels are low, try to avoid crowded places such as cinemas, pubs and public transport. This may help reduce your risk of infections.

How quickly you get back to your full social life may depend on the treatment you had and how your blood cell levels recover. Your doctor or specialist nurse can give you advice and tell you what your full blood count is.

Avoid contact with people who have an infection such as chickenpox, shingles or measles. If you are worried you have had contact with someone with an infectious disease, contact your doctor or specialist nurse.

Regular gentle activity, such as walking, is a good way to build up energy levels. It can also help reduce stress and anxiety.

But you will need to build it up gradually and be careful about exercising while your blood count is recovering. If your red blood cells are low (anaemia), you will feel very tired and will need to take things slowly. You will need to avoid swimming and high-impact or contact sports until you are no longer at risk of infection and bleeding. Ask your doctor or nurse about what kind of exercise is suitable for you when your blood count is recovering.

Your doctor or nurse can give you advice about when to start work or study again. It may depend on the treatment you had and how well you are recovering. If you had a stem cell transplant, your doctor or specialist nurse may advise you to wait until your blood count has gone back to normal or almost normal.

When you are ready to go back to work or study, you may want to start part-time and build up gradually. Talk to your employer, occupational health department, teacher or tutor about your plans for returning to work or study. There may be ways they can help.

You can also ask them to talk to the people you work or study with about your illness and treatment before you return. Check that you feel comfortable about the way they plan to do this. We have more information about returning to work.

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

• use plain English
• explain medical words
• use short sentences
• use illustrations to explain text
• structure the information clearly
• make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.