Treatment options for CLL

If the time comes when you need treatment for CLL, your hospital team will recommend one or a combination of the following drugs.

These drugs are part of a group of medications called targeted therapies. Targeted therapies have recently replaced chemotherapy and chemo-immunotherapy as standard treatment for CLL, except in rare circumstances where they may not be available or suitable.

Inhibitors (cancer growth blockers)

Inhibitors are targeted drugs which block the signals that make cancer cells grow. Inhibitors used to treat CLL include acalabrutinib, ibrutinib, venetoclax and zanubrutinib. Inhibitors are usually taken as tablets over a period of months, or for as long as they continue to control the CLL and any side effects are manageable.

Monoclonal antibodies (immunotherapy)

Monoclonal antibodies are targeted drugs which can bind to and kill specific cells. Monoclonal antibodies for CLL include rituximab and obinutuzumab. They are usually given as a drip (an infusion) in hospital.

There are several things your doctor will consider when deciding which treatments to recommend:

• Genetic test results – Testing for changes in the genes of your CLL cells will help your doctor recommend the best treatment for you.
• Your response to previous treatment – If you’ve had treatment for CLL before, your doctor will look at how well that treatment worked and whether you had significant side effects.
• Personal preferences – Your doctor will also take your personal circumstances and wishes into account. You’ll have the opportunity to share your preferences, ask questions and be part of the decision-making process. You might want to tell your hospital team what’s important to you, for example wanting to have treatment as an outpatient if possible rather than staying in hospital, so you can spend more time with your family.
• Short term vs long term treatment – You may hear this referred to as fixed duration vs continuous treatment. It means that some treatments are designed to be given over a set period of time and then stopped, whereas others can be taken every day for as long as needed. You can read more about the different types of treatment below.

If the CLL comes back (relapses) after treatment, you may be offered the same treatment again, if you responded well to it the first time round. Or, you may be recommended to try a different drug or combination of drugs, if your doctor thinks it may be more effective.

Some targeted treatments are given for a fixed duration – this means you will take them for a set period of time, usually 12 to 24 months. This approach is commonly used for venetoclax-based combinations. There may be the opportunity within a fixed duration treatment plan to have a break from treatment for a short period of time, which may help you plan for and manage personal life events.

Other treatments, like BTK inhibitors (such as acalabrutinib, ibrutinib or zanubrutinib), may be taken continuously, sometimes for years, as long as the treatment is working and any side effects are manageable.

Your hospital team will explain which option they believe is most suitable for you, based on the genetic features of CLL and how you respond to treatment. You should also have the opportunity to share your own preferences and make a decision about which treatment to try together.

The main drugs and drug combinations for CLL are listed below in alphabetical order. See above for the things your doctor will consider when recommending a particular treatment.

Whatever treatment you have, our online community forum can bring you support from people who really understand what it’s like to go through it. Have a look at what other people are saying, or start your own thread.

Most people will be offered targeted treatment with inhibitors or monoclonal antibodies, or a combination of the two. Not all treatments are currently funded by the NHS and may not be approved in all four countries of the UK. Speak to your hospital team about which treatments are available for you.

Pirtobrutinib is a newer type of BTK inhibitor which may be an option if the CLL has come back after treatment with ibrutinib, acalabrutinib, or zanubrutinib.

It is not yet routinely available on the NHS, but may be offered as part of a clinical trial or through individual funding requests.

Chemo-immunotherapy treatments such as bendamustine and rituximab, chlorambucil and obinutuzumab, and FCR used to be prescribed frequently, but are now rarely recommended. This is because targeted therapies are generally more effective and cause fewer side effects.

However, these chemo-immunotherapy combinations may still be used if other treatment options are not suitable or available. If you are recommended chemotherapy, your doctor will explain why and may offer additional treatment to help you manage any side effects.

The best place to get more information about your treatment is from your hospital team. They will explain why they are recommending a certain treatment and answer any questions you have.

Here are some questions you may like to ask:

• What treatment will I have?
• What is the aim of my treatment?
• Is there a clinical trial I can join?
• How and where will I be given the treatment?
• How long will treatment last?
• What might the side effects be?
• How can I manage these side effects?
• How will treatment affect my daily life?
• What’s the best outcome I can hope for?
• Who do I contact if I don't feel well?
• Who do I contact out of hours?

If you are keen to do your own research on specific drugs, it’s important to find accurate information. Googling often isn’t the best way to do this.

EMC is a website which publishes the Patient Information Leaflets drug manufacturers have to include in their packaging. Search the drug name and then click on the tab that says “Patient Leaflet”.

Be aware that these leaflets list all the side effects that have been reported and can look daunting. But remember that you won’t have all of these side effects and may not have any.

Always speak to your hospital team if you are worried or have any questions about your treatment.

A stem cell transplant aims to give patients healthy stem cells, which can then produce normal blood cells. Generally, this is not a suitable treatment for CLL. That’s because the risks of a transplant aren’t justified when you have a slowly developing disease like CLL. A transplant also involves intensive chemotherapy, which is hard to tolerate for people who are older or have other health concerns.

For a few younger, fitter people with faster growing CLL, a transplant may be a reasonable treatment option that could lead to a cure. But the risks of a transplant need to be carefully considered, especially when there are safer treatments available.

People with CLL who need a stem cell transplant will be offered one that uses stem cells from a healthy donor (an allogeneic transplant).

It’s normal to feel worried about starting treatment for blood cancer. It may feel like stepping into the unknown, but your hospital team is there to answer all your questions. Be sure to ask about anything that’s on your mind – it’s their job to explain what’s happening.

It can help to share your worries with other people who understand how you’re feeling. You can see what other people are saying about treatment and living with blood cancer on our online community forum.

If you need support talk to your hospital team about treatment or anything else, contact our Support Service on 0808 2080 888 or [email protected]. We can’t give you medical advice, but we can support you to make sure your questions are answered, and your wishes heard.