Treatment when chronic lymphocytic leukaemia (CLL) comes back

When chronic lymphocytic leukaemia (CLL) comes back it is called a relapse. You might need more treatment. Often the leukaemia relapses slowly so you may not need further treatment straight away. During the course of the disease you might have several relapses.

The aim of treatment is to get your CLL under control. When there's no sign of active leukaemia in your body, the CLL is said to be in remission. CLL is not usually curable but treatment can control it.

This page is about treatment when your CLL comes back.

Deciding about treatment for CLL that has come back

You might not need further treatment straight away. But your doctor might suggest treatment if you have symptoms.

When you relapse, your treatment plan depends on:

• how long your CLL has been in remission
• the treatment you had before
• how well the treatments you have had worked
• whether the leukaemia cells have a change (mutation) in the TP53 gene .
• your general health and fitness
• your personal wishes

Your doctors will repeat tests to see if your leukaemia cells have changes (mutations) in the TP53 gene. This is because these genes can change (mutate) over time.

Most treatments have side effects and some drugs might be more suitable for you than others. Your doctor will decide which drug is best for you, to lower the risk of treatment complications.

Your doctor will discuss your options with you. They will tell you about the different treatment side effects. They will also discuss what each treatment involves. For example, how long you have it and how often you will need to go to the hospital. 

What treatment will I have for CLL that has come back?

The first time your CLL comes back it is called a first relapse. 

Some people have a long period of remission before their CLL comes back. In this situation you might have the same drugs you had as your first treatment. Or, you might get a different drug or combination of drugs.

Some of the common treatment options for relapsed CLL include:

• acalabrutinib
• venetoclax on its own, or with rituximab
• idelalisib and rituximab
• ibrutinib
• zanubrutinib

Your doctor might suggest a stem cell transplant, although this is not a common treatment for CLL. Your doctor is most likely to suggest this if you are young and well enough to tolerate the intensive treatment. And if your leukaemia has come back quite quickly after your first treatment.

How you have treatment

Most people have treatment as an outpatient.

Treatment can be:

• tablets
• an injection into a vein as a drip (intravenously)

You have treatment in cycles or blocks. Each cycle usually lasts for 28 days. You have some drugs every day and others weekly or less often. After each cycle of treatment, your team will check your side effects. They will also check how well treatment is working.

You might have up to 6 cycles of treatment. But some treatments carry on until they stop working.

How does treatment work?

Cancer cells have changes in their genes (DNA) that make them different from normal cells. These changes mean that they behave differently. Cancer cells can grow faster than normal cells and sometimes spread. Targeted cancer drugs work by ‘targeting’ these differences that a cancer cell has. They work in different ways. For example, they can:

• stop cancer cells from dividing and growing
• encourage the immune system to attack cancer cells
• stop cancers from growing blood vessels

After first relapse

When CLL comes back again, it is called a second relapse, third relapse, and so on.

You might have one of the other treatment options above.

You might have other drugs as part of a clinical trial if you have already had 2 or more treatments.

Other treatments

You might have other treatments to treat symptoms of CLL, or to prevent problems caused by the leukaemia.

Other treatments you might have for CLL include:

• radiotherapy
• surgery
• supportive treatments such as antibiotics, blood products or steroids

Radiotherapy

Radiotherapy uses radiation, usually x-rays, to destroy cancer cells.

You don’t often have radiotherapy for CLL. But your doctor might suggest it if your spleen or lymph nodes are very swollen (enlarged) or causing you symptoms.

Surgery

Surgery is not a common treatment for CLL. But rarely, the doctor might suggest an operation to remove the spleen (splenectomy).  Removing the spleen can help with some of the symptoms caused by an enlarged spleen.

Supportive treatments

CLL and its treatment can cause problems. Supportive treatments can help to either prevent or control these problems.  Supportive treatments include:

• preventing and treating infections
• blood products
• treatment for autoimmune conditions
• pain management

Follow up and monitoring

How often you see your specialist depends on your situation. You need to see your doctor regularly, maybe weekly or monthly, if you are having treatment.

If you are not having any treatment, you see your doctor less often. The time between check ups will gradually get longer if everything is going well. You might only need to see your doctor once a year if your leukaemia is very stable. 

Your doctor examines you at each appointment. They ask how you are feeling. They also ask whether you have had any side effects, and about any worries you have.

You usually have a blood test at each visit. To find out how well treatment is working, you might also have:

• a bone marrow test
• a CT scan

Let your team know if you are worried or notice any new symptoms between appointments.

Coping with relapse

CLL can be difficult to cope with. Knowing that it is going to come back at some point but not knowing when is especially difficult. The time between remission and relapse varies from person to person. Some people have months and others have years. Living with uncertainty is hard. And when it does come back it can feel very difficult even when you have known it will happen.

The type of support people need also varies. Finding what works for you is important. Talking to family and friends helps many people. There is also help and support available from specialist nurses, counsellors and support groups.