Life after treatment for CLL

For most people, treatment for chronic lymphocytic leukaemia (CLL) can continue on and off for years. Life between treatments can present its own challenges. You may worry that every ache and pain means the leukaemia is coming back.

Learn more about:

• Overview
• Follow-up appointments
• Dealing with feelings of sadness
• Looking after yourself
• If CLL returns

Overview

Some people say that they feel pressure to return to “normal life”. It is important to allow yourself time to adjust to the physical and emotional changes, and establish a new daily routine at your own pace. Your family and friends may also need time to adjust.

Cancer Council 13 11 20 can help you connect with other people who have had leukaemia, and provide you with information about the emotional and practical aspects of living well after treatment.

For more on this, see Living well after cancer.

Follow-up appointments

After your treatment, you will have regular appointments to monitor your health, manage any long-term side effects and check that the leukaemia hasn’t come back or progressed. During these check-ups, you will usually have a physical examination and blood tests, and you may have a chest x-ray and scans.

When a follow-up appointment or test is approaching, many people find that they think more about the leukaemia and may feel anxious. Talk to your treatment team or call Cancer Council 13 11 20 if you are finding it hard to manage this anxiety. Between check-ups, let your doctor know immediately of any symptoms or health problems.

Dealing with feelings of sadness

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have had cancer.

Talk to your GP, as counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Ask your doctor if you are eligible. Cancer Council may also run a counselling program in your area.

For information about coping with depression and anxiety, call Beyond Blue on 1300 22 46 36. For 24-hour crisis support, call Lifeline 13 11 14.

Looking after yourself

Cancer can cause physical and emotional strain, so it’s important to look after your wellbeing. Cancer Council has information and programs to help you during and after treatment.

Call 13 11 20 to find out more, or see Managing cancer side effects, Exercise and cancer, Complementary therapies, Emotions and cancer, Nutrition and cancer, Sexuality, intimacy and cancer, Fertility and cancer, and Living well after cancer.

If CLL returns

In many cases, treatment will make the leukaemia symptoms ease or disappear for a period of time. This is called remission. It is common for CLL to come back (relapse) after treatment following a period of remission.

If you have a relapse or the disease transforms, further treatment can usually be given to control the leukaemia. This may lead to another remission. In some situations, doctors may recommend a stem cell transplant.