Stages of CLL
Doctors use "stages" to describe how far CLL has developed and help them determine when it needs to be treated.
There are 3 main stages of CLL:
- stage A – you have enlarged lymph glands in fewer than 3 areas (such as your neck, armpit or groin) and a high white blood cell count
- stage B – you have enlarged lymph glands in 3 or more areas and a high white blood cell count
- stage C – you have enlarged lymph glands or an enlarged spleen, a high white blood cell count, and a low red blood cell or platelet count
Stage B and C CLL are usually treated straight away. Stage A generally only needs to be treated if it's getting worse quickly or starting to cause symptoms.
Monitoring early-stage CLL
Treatment may not be needed if you do not have any symptoms when you're diagnosed with CLL.
This is because:
- CLL often develops very slowly and may not cause symptoms for many years
- there's no benefit in starting treatment early
- treatment can cause significant side effects
In these cases, you'll normally just need regular visits to your doctor and blood tests to monitor the condition.
Treatment with chemotherapy will usually only be recommended if you develop symptoms or tests show that the condition is getting worse.
Chemotherapy for more advanced CLL
Many people with CLL will eventually need to have chemotherapy. This involves taking medication to keep the cancer under control.
There are a number of different medicines for CLL, but most people will take 3 main medications in treatment cycles lasting 28 days.
These medicines are:
- fludarabine – a chemotherapy medicine usually taken as a tablet for 3 to 5 days at the start of each treatment cycle
- cyclophosphamide – a chemotherapy medicine also usually taken as a tablet for 3 to 5 days at the start of each treatment cycle
- rituximab – a targeted cancer drug given into a vein over the course of a few hours (intravenous infusion) at the start of each treatment cycle
Fludarabine and cyclophosphamide can usually be taken at home. Rituximab is given in hospital, and sometimes you may need to stay in hospital overnight.
A number of different medicines can also be tried if you cannot have these medicines, you have tried them but they did not work, or your CLL has come back after treatment.
These include bendamustine, chlorambucil, ibrutinib, idelalisib, obinutuzumab, ofatumumab and prednisolone (a steroid medication).
Side effects of treatment
The medicines used to treat CLL can cause some significant side effects, including:
- persistent tiredness
- feeling sick
- an increased risk of infections
- easy bruising or bleeding
- anaemia – shortness of breath, weakness and pale skin
- hair loss or thinning
- an irregular heartbeat
- an allergic reaction
Most side effects will pass once treatment stops. Let your care team know if you experience any side effects, as there are some treatments that can help.
Stem cell or bone marrow transplants
Stem cell or bone marrow transplants are sometimes used to try to get rid of CLL completely, or control it for longer periods.
Stem cells are cells produced by the spongy material found in the centre of some bones (bone marrow) and can turn into different types of blood cells, including white blood cells.
A stem cell transplant involves:
- having high-dose chemotherapy and radiotherapy to destroy the cancerous cells in your body
- removing stem cells from the blood or bone marrow of a donor – this will ideally be someone closely related to you, such as a brother or sister
- transplanting the donor stem cells directly into 1 of your veins
This is the only potential cure for CLL, but it's not done very often as it's an intensive treatment and many people with CLL are older and not well enough for the benefits to outweigh the risks.
The initial treatment with chemotherapy and radiotherapy can place a significant strain on your body and cause troublesome side effects.
There's also a risk of serious problems after the transplant, such as graft versus host disease. This is where the transplanted cells attack the other cells in your body.
Other treatments for CLL
There are also a number of other treatments that are sometimes used to help treat some of the problems caused by CLL, particularly if you cannot have chemotherapy or it does not work.
- radiotherapy to shrink enlarged lymph glands or a swollen spleen
- surgery to remove a swollen spleen
- antibiotics, antifungals and antiviral medications to help reduce your risk of picking up an infection during treatment
- blood transfusions to provide more red blood cells and platelets (clotting cells) if you experience severe anaemia or problems with bleeding and bruising
- immunoglobulin replacement therapy – a transfusion of antibodies taken from donated blood that can help prevent infections
- injections of medication called granulocyte-colony stimulating factor (G-CSF) to help boost the number of white blood cells
You may also need additional treatment for any complications of CLL that develop.
Deciding against treatment
As many of the treatments for CLL can have unpleasant side effects that may affect your quality of life, you may decide against having a particular type of treatment.
This is entirely your decision and your treatment team will respect any decision you make.
You will not be rushed into deciding about your treatment, and you can talk to your doctor, partner, family and friends before making a decision.
Pain relief and nursing care will still be available as and when you need it.
Clinical trials for CLL
Several clinical trials are currently being conducted in the UK to try to find the best way of treating CLL.
These are studies that use new and experimental techniques to see how well they work in treating, and possibly curing, the condition.
If you're interested in taking part in a clinical trial, your care team can tell you if there are any running in your area, and explain the benefits and risks involved.