CLL treatment and side effects

Updated 10 Aug 2017

Although CLL isn’t a curable condition in most cases, many people with the disease will have a good quality of life.

Active treatment for CLL can involve medication (either chemotherapy or non-chemotherapy tablets) and antibodies. Some people may have a stem cell transplant, but this is rare. A very small number of people might need more intensive treatment earlier on if their CLL is progressing more quickly, or if they were diagnosed at a late stage.

You might not need treatment at first – especially if you don’t have any symptoms. There’s no evidence that being treated early on, when you have no symptoms, has any benefits. If you feel well, your team might just see you for regular check-ups or, in certain situations, your condition can be monitored without you needing to come to hospital – this is known as ‘watch and wait’. Your specialist will tell you when they think you might need to start treatment and discuss your options with you.

 

Treatment types

Chemo-immunotherapy

If you need to start treatment and your general health is good your healthcare team will probably suggest you are given anti-leukaemia drugs (chemotherapy). Drugs called monoclonal antibodies are usually given as well; these are artificial antibodies which can bind to and kill specific cells. Treatment using a combination of chemotherapy drugs and antibodies is called chemo-immunotherapy.

FCR: Fludarabine, cyclophosphamide and rituximab

If you’re fit and have no other medical problems, you’re most likely to be treated with FCR – a combination of chemotherapy (cell-killing) drugs and monoclonal antibodies. FCR is given in treatment ‘cycles’. Each
cycle is 28 days long, and you’ll normally have treatment each day for five days and then have a break of 23 days with no treatment. This is repeated up to six times – each period of treatment and rest is called a cycle.

Fludarabine and cyclophosphamide are tablets that you take by mouth (orally). Rituximab is given as a drip or injection into a vein in one of a number of areas – you might hear the terms ‘infusion’, ‘intravenously’, or IV’.

Alemtuzumab

This monoclonal antibody isn’t usually given anymore as it’s now an unlicensed drug and only available through a compassionate access programme. However, it may be used if your cytogenetic blood tests show that fludarabine isn’t likely to work for you.

Alemtuzumab is usually given alone, again in cycles; your healthcare team will tell you exact timings. It’s usually given as an injection just beneath the skin (subcutaneous). You might be given steroids at the same time.

Bendamustine

FCR is not suitable for everyone. If you’re older or have other medical conditions, and have CLL requiring treatment, you may be treated with the chemotherapy drug bendamustine. Bendamustine is given as an infusion on the first two days of a four week cycle, for up to six cycles.

Chlorambucil (usually given with obinutuzumab or ofatumumab)

If other treatments aren’t suitable for you, you might be offered chemotherapy with a drug called chlorambucil, combined with the monoclonal antibodies obinutuzumab or ofatumumab. Chlorambucil is given as tablets you take by mouth (orally). Obinutuzumab and ofatumumab are given as infusions and your healthcare team will tell you how many courses you’ll have, and when.

Rituximab

In some cases (such as if you’re taking part in a research study) you may be offered treatment with the monoclonal antibody rituximab alongside chemotherapy drugs. Rituximab is usually given as an infusion.

Ibrutinib

Ibrutinib is a targeted drug that blocks signals within cells that are important for their survival. You may be offered ibrutinib as a first treatment if other treatments aren’t suitable for you and you have certain genetic characteristics known as 17p deletion or TP53 mutation. Ibrutinib can also be used as a second treatment if your first treatment hasn’t worked as well as hoped and/or the CLL has  returned after a previous response. You take ibrutinib as capsules once a day.

Idelalisib and rituximab

Idelalisib blocks some of the proteins inside cancerous blood cells that encourage the cancer to grow. It is usually used with rituximab. You may be offered idelalisib and rituximab as a first treatment if other treatments aren’t suitable for you and you have certain genetic characteristics known as 17p deletion or TP53 mutation. It can also be used to treat some people whose leukaemia has not responded to other treatments.

Recent research has shown that you may be at greater risk of serious and fatal infections if you’re treated with idelalisib. To manage these risks, you will be given antibiotics throughout your treatment as protection (which is referred to as prophylaxis). All drug treatments carry some risk. Your healthcare team will weigh the risks carefully against the benefits when deciding which treatment to offer you.

Venetoclax

Venetoclax is new targeted drug which blocks the growth of CLL cells and promotes cell death. This can be used if ibrutinib or idelalisib have stopped working or there is some other reason why you should not receive these. Venetoclax is currently going through the approval process for use by the National Health Service (NHS). Speak to your healthcare team about which treatments are available to you.

Radiotherapy

Most people with CLL don’t have radiotherapy, but if your spleen is swollen and uncomfortable, local radiation treatment to shrink it might be helpful.

On very rare occasions patients might have an operation to remove their spleen (a splenectomy). You might then get more infections, but your healthcare team will give you advice on how to decrease the chances of this happening. This might include long-term antibiotic treatment.

Stem cell transplant

A stem cell transplant is what used to be called a bone marrow transplant. It aims to give patients healthy stem cells, which then produce normal blood cells.

It isn’t a suitable treatment for most CLL patients. This is because the risks of a transplant aren’t justified for patients with a slowly developing disease like CLL. For some patients – especially those whose disease is progressing more quickly – a transplant may provide a cure, but the risks of a transplant need to be carefully weighed against the potential of a cure.

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

Stem cell transplants using your own cells (autologous/autograft) are no longer used to treat people with CLL as they do not successfully stop the CLL from coming back.

> For more information on stem cell transplants download or order our booklet The seven steps: blood stem cell and bone marrow transplants

Outlook

New treatments for CLL which have been introduced in recent years mean that, generally speaking, patients with CLL have a better prognosis thatn previously.

CLL generally progresses very slowly and survival can be measured in decades. It might progress more quickly in some people, and they may need treating earlier or more aggressively.

Talking about your prognosis

You may find it hard to ask or talk about your prognosis. Sometimes those close to you might want to know your prognosis even if you don’t. However, your healthcare team aren’t allowed to give this or any other information to anyone – not even family members – without your permission. Try to decide early on who you want to know about your condition, then tell your healthcare team – you can change your mind any time.

Remember that your outlook may change, for example if you respond well to treatment. If there’s a change in your condition, or if you’ve finished all or part of your treatment, you might want to consider asking if your prognosis is still the same.

Treatment planning

When will I start treatment?

You’ll only be given active treatment for CLL if and when you need it. If you don’t need to start treatment straight away, your healthcare team may recommend ‘watch and wait’ (sometimes called‘active monitoring’). This means you won’t start treatment straight away, but you’ll have regular appointments where you’ll be monitored closely for any changes.

It might be surprising to hear that you have cancer but you don’t need treatment straight away, but research has shown that for people with few or no symptoms, starting treatment straight away is not any better than delaying treatment until tests show you need it. Watching and waiting won’t affect your outlook (prognosis) and it means that you won’t have to go through any of the side effects of chemotherapy unless you need to.

The decision about whether to watch and wait before starting treatment will be based on how you’re doing and not on the cost to the NHS, or any other reason.

You’ll have regular appointments at your GP surgery, in hospital, or using ‘remote monitoring’, which is like a phone or video clinic, and offers a good way to be followed up without affecting your life too much. Your doctor should speak to you about which type of monitoring is suitable for you.

Wherever your monitoring takes place, it’s really important for you to take part, as this is when you and your medical team can talk about how you’re feeling and whether you might need to start treatment.

Starting treatment

You can’t start treatment if your consultant doesn’t think you need to. If you don’t agree with them, you can ask for a second opinion.

You might need to start treatment if:

  • your blood counts are changing – so if your red cell count or platelet count is going down or the number of CLL cells in your blood is going up quickly
  • you have a very swollen spleen or lymph nodes, especially if these are uncomfortable
  • you have symptoms like increasing extreme fatigue, fever without any other signs of infection, drenching night sweats, or marked weight loss.

None of these is an automatic ‘trigger’ for starting treatment. If your consultant thinks it’s important to start treatment they’ll tell you and explain the options open to you, to help you make a decision.

If you decide you don’t want to start treatment, or you want to delay your treatment, it’s important that you understand the risks involved.

First and second-line treatment

Initial or first-line treatment

The first treatment you have after being diagnosed is called initial or first-line treatment. The aim of initial treatment is to reduce the number of CLL cells, to get control of the disease.

If there is a clinical trial (study) available, your consultant might recommend that you consider this. Clinical trials are done for several reasons, including to look for new treatment options and to improve existing treatments. Taking part in a clinical trial has many advantages, such as the opportunity to have the newest available treatment which will only rarely be available outside of the trial. You’ll also be very closely monitored and have detailed follow up.

Taking part in a clinical trial does come with uncertainties, and you may prefer not to take part in one. If you don’t want to be in a trial, or there isn’t a suitable trial available, you’ll be offered the best treatment available at that time which is suitable for your individual condition.

> For more information on clinical trials, download or order our booklet: Your guide to clinical trials

Second-line treatment

Most patients respond well to treatment, but it’s unlikelyto cure you. Unfortunately, even if you respond well to the first treatment, there’s a strong chance that your disease will come back (recur), although this might not be for several years. If you’ve been in remission for a long time after having FCR or other chemo-immunotherapy, it’s likely that the same treatment will work again, so repeating FCR is a potential option.

If your CLL comes back soon after your first FCR treatment or other chemo-immunotherapy, there are a number of options. Your team might recommend that you take part in a clinical trial or offer you different treatments. These include ibrutinib, or idelalisib with rituximab.

Rarely, younger patients with high-risk disease may be offered a stem cell transplant.

A small number of people don’t respond well to initial treatment. This is called refractory CLL. If this happens to you and your lymph nodes or spleen are swollen, then you might be given high doses of steroids. This will usually cause them to shrink and then other treatments can be considered.

Side effects

You may experience some side effects from your treatment, especially if you’ve had chemo-immunotherapy. They include:

  • achy feeling
  • constipation
  • diarrhoea
  • extreme tiredness
  • infections
  • low blood pressure
  • low platelet count (thrombocytopenia)
  • low red cell count (anaemia)
  • mouth sores
  • nausea and vomiting
  • low neutrophil count (neutropenia), which means your body will find it harder to fight infection.

You’re unlikely to have all of these. Some side effects are linked to specific drugs – for example, fludarabine treatment can increase the risk of infections.

For most patients with CLL, side effects aren’t severe and they usually go away when you stop treatment. If you have side effects, do tell your healthcare team as they might be able to help with them – there are medicines you can take to help with nausea and vomiting, for instance.

Infections can become serious while you’re on treatment. Your medical team should tell you who to contact if you are unwell and/or have signs/symptoms of infection.

Follow-up

Your follow-up will depend on what type of treatment, if any, you’re having.

If you’re treated with chemo-immunotherapy such as FCR 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. Do then contact your healthcare team if you think you have an infection, or if you’re poorly and you’re not sure why.

Prophylactic treatment (prophylaxis)

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 prophylactic (preventative) treatment or prophylaxis.

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 Medic Alert. You can also contact them on 01908 951 045.

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

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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