First treatment for chronic lymphocytic leukaemia (CLL)

You might not need treatment straight away. Your team decides whether you need treatment depending on your:

• symptoms
• stage of chronic lymphocytic leukaemia (CLL)

Your doctor might start treatment if:

• you have fast developing disease
• you have bulky lymph nodes or spleen
• the number of red blood cells and platelets in your blood is getting lower
• you have symptoms such as tiredness, severe weight loss or high temperatures

What is the aim of treatment?

The main aim of your treatment is to try to get the 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.

First line treatment

Your first treatment is also called first line treatment. The most common type of first line treatment for CLL are targeted cancer drugs . For example acalabrutinib, ibrutinib, zanubrutinib and venetoclax. These work in different ways to kill the leukaemia cells.

Some targeted drugs are also a type of immunotherapy. These are called monoclonal antibodies (MABs). Rituximab and obinutuzumab are examples of MABs for CLL.

You might have a targeted drug on its own or together with another targeted or immunotherapy drug.

Doctors don't usually offer chemotherapy as a first treatment for CLL.

When you are first diagnosed you may also need treatment for any symptoms that you have. These symptoms might include tiredness and infections.

Making decisions together

What treatment will I have for CLL?

Your doctor considers several factors when deciding about treatment, including:

• whether your CLL has changes (mutations) in the TP53 gene
• your general health and fitness
• your personal wishes

Some people aren’t well enough to have the standard treatment. There are other treatment options available. 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. 

If your CLL doesn’t have a change (mutation) in the TP53 gene

You might have:

• a targeted drug on its own, such as acalabrutinib or zanubrutinib
• venetoclax and obinutuzumab
• venetoclax and ibrutinib

It isn't common to have chemotherapy as your first treatment. If you do have chemotherapy, you might have it together with a type of targeted immunotherapy drug. This is called chemoimmunotherapy.  You might have a combination of fludarabine, cyclophosphamide and rituximab (FCR).

You might not be fit enough to have these  treatments. If this is the case, you can have chlorambucil chemotherapy tablets on their own, or steroids. You can take these at home.

If your CLL has a change (mutation) in the TP53 gene

You usually have treatment with targeted cancer drugs such as:

• acalabrutinib or zanubrutinib
• venetoclax and obinutuzumab
• ibrutinib
• venetoclax and ibrutinib
• idelalisib and rituximab

You can read more about these different treatments and their side effects on our drug pages. 

How you have treatment

You have treatment in cycles or blocks. Each cycle usually lasts for 28 days. After each cycle of treatment, your team will check your side effects. They will also check how well treatment is working.

Treatment can be:

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

Usually, you have treatment as an outpatient .

We have a page about how you have treatment for CLL. You can read more about the different treatments. This includes information about how often you take the treatment and for how long. 

Other treatment

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 to your spleen
• surgery to your spleen
• supportive treatments such as antibiotics, blood products or steroids
• stem cell transplant

Radiotherapy

Radiotherapy means the use of 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 is 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).  You might have this because your spleen is destroying too many red blood cells or platelets. Removing the spleen can relieve this symptom. 

Supportive treatment

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.

Treatment when CLL comes back

When CLL comes back, it is called a relapse. The treatment you need depends on your individual situation.

Coping with CLL

Coping with a diagnosis of CLL can be difficult. There is lots of support available including specialist nurses. It is important to get the support you need.