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Chronic lymphocytic leukaemia (CLL) treatment and side effects

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Chronic lymphocytic leukaemia (CLL) after treatment

Your follow-up after treatment will depend on the type of treatment you've had.

If you’re treated with chemo-immunotherapy such as FCR (a combination of chemotherapy drugs fludarabine and cyclophosphamide, and rituximab, a monoclonal antibody), and your illness responds well, it might be years before you need any more treatment. If you’re treated with a targeted therapy such as ibrutinib you’ll stay on treatment for the long term.

Your consultant will explain how often you’ll have your follow-up appointments. This varies between people and will depend on your condition. Your doctor should talk to you about what to do between your appointments if your condition changes and if you can switch to remote monitoring after a certain amount of time.

Protecting yourself against infections

You’re likely to have an increased risk of infection during your treatment and for several months after. It’s worth asking for advice on what precautions you may need to take. Contact your healthcare team if you think you have an infection, or if you’re poorly and you’re not sure why.

Prophylaxis (preventive treatment)

Your doctors may also advise that you take some tablets to reduce the risk of getting infections during and after your treatment for CLL. These can include medicines for bacterial, viral or fungal infections as needed – this is known as prophylaxis or prophylactic treatment.

Immunoglobulin replacement therapy

If the level of antibodies in your blood is low, you may need immunoglobulin replacement therapy to help you fight any infections. This means giving you extra antibodies – they are normally given through a drip into a vein.

Blood transfusions

If you’ve been treated with fludarabine or bendamustine and you then need a blood transfusion, you’ll need to receive blood that has been treated with radiation (irradiated blood). This kills any white cells in the blood going into you and protects you against a very rare type of transfusion reaction.

You should be given a card to keep with you, explaining that you need irradiated blood. You may also want to wear a special bracelet to give this information to doctors caring for you if you’re unconscious or unable to explain.

In an emergency, if you need a blood transfusion as a life-saving intervention non-irradiated blood can be used so the transfusion isn’t delayed.

You can get a bracelet or ‘dog tag’ from a charity called MedicAlert.

CLL and skin cancer

People with CLL have a slightly higher risk of developing skin cancer, whether they have had treatment or not. You should take extra care to protect your skin from sunburn.

Supportive care with G-CSF

It’s sometimes necessary to give treatment to help with the recovery of your normal neutrophils (a type of white blood cell) if these have fallen to very low levels after your CLL treatment and/or you’ve had an infection. This is called G-CSF (granulocyte-colony stimulating factor) and is a small injection given under the skin (subcutaneously) for three to five days.

The injection doesn’t hurt but may sometimes cause some aching in your back or other bones.

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