At UCLH you will have access to the latest treatments and technology and have a personal, individual care plan based around your needs. You will receive expert care from a specialist team in a safe and award winning environment. We offer a full range of treatments including chemotherapy, monoclonal antibody treatments, immunotherapy and stem cell transplantation.
Your treatment will be delivered within a number of comprehensive, dedicated services led by medical and nursing cancer care experts. This is enhanced further by support from a team of Clinical Nurse Specialists (CNS) who complement the medical team and oversee your treatment journey. They offer on-going support from diagnosis and treatment to investigations and outcomes. This includes telephone advice and support when you are at home.
Your treatment plan
Treatment for chronic lymphocytic leukaemia (CLL) will depend on what stage the condition is when it is diagnosed. Other factors will also be considered, such as your age and overall level of health and fitness.
As CLL often develops very gradually, the time scales for treatment vary considerably. Some people don't experience symptoms for a long time and may not need treatment for many years, possibly decades.
For others, particularly those with certain genetic abnormalities, the condition may progress much faster (within a few months). If you have later-stage CLL (stage B or C), your haematologist will probably recommend chemotherapy.
Discussions about your treatment plan will usually take place with several doctors and other health professionals who specialise in different aspects of treating lymphoma. This is known as a multidisciplinary team (MDT). Your MDT will recommend the best treatment options for you. However, you should not be rushed into making a decision about your treatment. Before deciding, you may wish to talk to friends, family and your partner.
You will be invited back to see your CLL team for a full review and discussion about the risks and benefits of any treatments planned before therapy begins. Your personal wishes for treatment will always be taken into consideration in this discussion. You will also be allocated a key worker which is normally your CNS. If you have enrolled in a trial, it will be a trial practitioner. The CNS and research practitioner have expert knowledge to help support and guide you through your diagnosis and treatment. He or she will be your main point of contact within the hospital and whilst you are at home.
Treatment may not be needed if you don't have any symptoms when you're diagnosed with CLL. Evidence shows that the condition often develops very slowly, and if you don't have any symptoms there is no advantage in starting treatment early. In such cases, a policy of "watchful waiting" is usually recommended, which involves regular visits to your doctor and blood tests, so that the condition's progress can be carefully monitored. Many studies have confirmed that this monitoring approach is safe and does not reduce the chances of survival for patients.
Treatment for CLL will usually only be recommended if you have:
- symptoms, such as severe tiredness, unintentional weight loss, loss of appetite
- enlarged lymph nodes
- bone marrow failure, resulting in a low haemoglobin and platelet count.
- rapidly rising numbers of lymphocytes (white blood cells) in your bloodstream
repeated infections that require antibiotics to clear up.
Chemotherapy consists of powerful drugs that cause the death of cancerous cells. However, some fast growing, healthy cells in the body can be affected. It is the effect of the chemotherapy on the healthy cells in the body which produces side effects. Chemotherapy can be delivered in tablets or through the vein and is administered by nurses specially trained in chemotherapy. It is normally a combination of drugs and given in blocks or cycles of treatment, therefore allowing a period of time for the healthy cells to recover.
Chemotherapy can have several side effects, the most significant of which is the potential damage to your bone marrow. Bone marrow is responsible for producing the components that make up your blood; white bloods cells which fight infections, platelets that help the blood to clot and red cells that deliver oxygen around your body. Chemotherapy can interfere with the production of these cells in the bone marrow which can possibly cause the following problems:
- increased vulnerability to infections
- bleeding and bruising more easily
- anaemia or low red cells causing breathlessness or fatigue
Chemotherapy can weaken your immune system, (you become ‘immunocompromised’). This can be serious, as it can cause infections to develop. You will be monitored closely whilst on chemotherapy, but should you experience any of the above you would need to contact your team. You will be given a '24-hour hotline' number to call when you start your treatment so that any problems relating to your treatment can be addressed as soon as possible.
This effect of chemotherapy on the bone marrow is generally temporary and is experienced in the first one to two weeks following treatment. This is why chemotherapy is given in cycles to allow a period of time for the healthy cells to recover. You may also be prescribed a course of antibiotics to take during your chemotherapy treatment to help prevent infections. There are also other side effects associated with chemotherapy agents, and your team will give you oral and written information on all of these and be able to answer your questions and concerns.
After a period of remission, CLL can return and you may begin to experience symptoms again. This is known as a relapse. If CLL returns, you may need to have more chemo- and/or biological therapy.
Since the development of better, genetic tests, therapy is better targeted to your own sensitivity to treatment.
The standard first line treatment for CLL is a combination of three medications consisting of chemotherapy and a monoclonal antibody. (These are artificial antibodies that can bind to and kill specific cells.)
A combination of fludarabine, cyclophosphamide and rituximab is the most widely used first line treatment for patients with CLL. Fludarabine and cyclophosphamide are given in tablet form and taken for five days every 28 days. Rituximab is given intravenously (directly into a vein) over the course of several hours every 28 days.
Most people benefit from FCR. Although it won't cure the condition, it usually leads to a remission – where there is no sign of CLL and you don't have any symptoms. It can last for many months or years.
Rituximab is a monoclonal antibody. Rituximab works by sticking to a protein found on the surface of the lymphocytes (cancerous white blood cells) and causing their cell death. It is commonly used in combination with other chemotherapy medication, such as fludarabine and cyclophosphamide (see above).
It's given intravenously (directly into a vein) over the course of several hours. This is known as an infusion.
Common side effects of rituximab include flu-like symptoms, such as feeling sick, headache, a high temperature and chills. You may also have an itchy rash in the area where the medication enters the vein. Most side effects of rituximab occur within 24 hours of treatment starting for the first time. You will be closely monitored once your treatment begins.
If you start to experience an adverse reaction, such as shortness of breath or chest pain, anti-allergy medicines, such as corticosteroids, can be used to help relieve your symptoms.
Alemtuzumab is like rituximab – a medication called a monoclonal antibody that recognises certain proteins on the surface of lymphocytes, attaches to them and helps destroy them. It may be considered on a compassionate access programme if your cytogenetic blood tests show that your type of CLL will not respond to fludarabine. Like rituximab, alemtuzumab is administered intravenously. It can also be given by injection.
The main side effect of alemtuzumab is that it can weaken your immune system and make you vulnerable to infection. You will therefore be prescribed antibiotics whilst taking it. You need a low threshold to ask for advice if you are unwell whilst on this drug – or indeed any other chemotherapy.
Bendamustine is a relatively new medication for treating CLL. The National Institute for Health and Care Excellence (NICE) recommends bendamustine as a treatment option for people with advanced CLL (stage B or C) who are unable to tolerate fludarabine. It is well tolerated and a good choice if you are older or have other medical problems.
Bendamustine is given by infusion, twice a week every four weeks. This cycle of treatment may be repeated up to six times. The most serious side effect of bendamustine is a weakened immune system giving rise to infections. It is often given in combination with Rituximab.
Chlorambucil is a chemotherapy medication that is given in tablet form usually for seven days, once a month for six months.
It's sometimes given in combination with rituximab. It can have side effects, such as low blood counts and infections, but is generally well tolerated. It's sometimes used in people who aren't fit enough to receive FCR or bendamustine.
Ofatumumab is a monoclonal antibody that is similar to rituximab. It is sometimes used in people with CLL that has not responded well to initial treatment or relapsed soon after receiving first line treatment. It can also be used in those who aren't fit enough to receive other anti CLL drugs.
It is given as an infusion, and the main side effects are allergic reactions and low blood counts. You will be closely monitored once your treatment begins.
This is a new way of treating CLL with an oral tablet. It is usually initiated with Rituximab, but once the course of Rituximab infusions is completed, you will stay on the tablet every day (twice daily). It blocks an enzyme that is overactive in the lymphocytes, and by destroying these, the number of cancer cells are reduced. As with all medicines, it is possible that you may develop side effects and there is close monitoring associated with this drug.
This other new anti-cancer drug may be available as a treatment option.
Ibrutinib blocks pathways that help CLL cells live and grow thus greatly reducing the proliferation and survival of the malignant cells. Like other drugs it can interact with other medications you are taking so it is important to bring a list of medications already prescribed to you along to your appointments. You should report any side effects from Ibrutinib without delay to your team at the hospital so that these can be managed.
Other, new drugs are becoming available in the treatment of CLL. One such drug is another monoclonal antibody called Obinutuzumab that is used in combination with Chlorambucil in patients who have not received other lines of treatment for their CLL previously.
This list is not exclusive, and there are other therapy options, which your consultant will discuss with you if and when needed.
Bone marrow or stem cell transplants are sometimes used to treat CLL. This type of intensive treatment aims to get rid of CLL completely, or control it for longer periods. Bone marrow transplants have better outcomes when the donor has the same tissue type as the person receiving the donation. Therefore, the best donor is usually a brother or sister with the same tissue type.
Before having a bone marrow or stem cell transplant, you will have a number of tests to check you're fit enough to have this type of intensive treatment. You will also be given aggressive, high-dose chemotherapy and radiotherapy to destroy any cancerous cells in your body and put the CLL into remission. This can place significant strain on your body and can cause additional side effects. Due to these issues, transplants are usually only successful when they are carried out in older people in good health.
In many cases of CLL, the potential risks of transplantation far outweigh any benefit.
After your course of treatment ends and your CLL is in remission (not detected on your final scan or bone marrow test) you enter into a period of regular follow-up where your full blood count and your symptoms will be monitored.
As many of the treatments described in this section have unpleasant side effects that can 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 won't be rushed into making a choice about your treatment, and before making a decision you can talk to your doctor, partner, family and friends.
Pain relief, symptom control and nursing care will be made available as and when you need it.
Many people affected by blood cancer find it useful to get extra support. There are several organisations that offer information, advice and support, and at UCLH we can give you some recommendations.
Clinical trials research new treatments to see if they are more effective than the standard treatments already available. This may be testing a new drug, or giving an existing drug in a different way. They aim to find the treatments that work best and cause the fewest side effects.
Clinical trials may be carried out to:
- Test new treatments, such as chemotherapy drugs, biological agents or antibody treatment
- Look at new combinations of existing treatments, or change the way they are given, to make them more effective or to reduce side effects
We currently have four clinical trials open which our CLL patients can access. These treat patients in both the upfront and relapsed setting. We have a number of studies that allow patients to access novel agents.
The portfolio of trials at UCLH:
FLAIR - a trial comparing ibrutinib and rituximab with fludarabine, cyclophosphamide and rituximab for people who haven't yet had treatment for CLL
COSMIC – A trial comparing standard chemotherapy with mega dose Ofatumumab with standard Ofatumumab for patients with relapsed CLL
CLL210 – A trial to look at the safety and efficacy of Lenoliomide, Dexamethasone and Ofatumumab in treating patients with high risk CLL
GALACTIC – A trial to look at the efficacy of obinituzimab to consolidate prior treatment for patients with CLL