The treatment you have will depend on your individual situation and your general health. The main treatment for primary CNS lymphoma is usually chemotherapy. Some people may have radiotherapy after chemotherapy or it may be given on its own. Drugs called steroids are also used.
A team of specialists will plan your treatment. This will usually include a cancer doctor (oncologist), doctors who specialise in conditions of the brain (a neurologist or neurosurgeon) and a specialist nurse.
They will explain the aims of your treatment, what it involves, and the benefits and disadvantages. Deciding on the treatments that are right for you is a decision you make in partnership with your doctor. Make sure you have enough information and time to help you make any treatment decisions.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It is often the first treatment for primary CNS lymphoma. A nurse will usually give you the chemotherapy drugs into a vein (intravenously). This is usually through a fine tube that goes under the skin of your chest and into a vein close by (central line). Or it can be given into a fine tube that is put into a vein in your arm and goes up into a vein in your chest (PICC line).
Chemotherapy can sometimes be given into the fluid surrounding the brain by a lumbar puncture, called intrathecal chemotherapy. It’s done in a similar way to a lumbar puncture. Before removing the needle, the doctor puts a small amount of liquid chemotherapy into the spinal fluid.
Another way of giving chemotherapy is to inject the drugs into a special flat plastic bubble called an ommaya reservoir. A surgeon places it under your scalp during an operation. It holds the chemotherapy drugs as they flow through a small tube into the ventricles (fluid-filled cavities) of the brain.
Doctors use chemotherapy drugs that are able to pass into the brain and spinal cord. Part of the brain’s natural protection stops certain drugs getting through (called the blood-brain barrier). The most common drug doctors use to treat primary CNS lymphoma is methotrexate, which is given in high doses. It can be given on its own or in combination with other chemotherapy drugs and/or steroids.
Side effects of chemotherapy
Your doctor or specialist nurse will tell you what to expect. They can prescribe medicines to prevent or reduce side effects and give you advice on managing them.
One of the main side effects is risk of infection. Chemotherapy temporarily reduces the number of white blood cells, which help fight infection. You may be given drugs to reduce your risk of getting an infection.
Chemotherapy can also affect red blood cells, which carry oxygen around the body, and platelets which help the blood to clot. Other side effects can include feeling sick, sore mouth and hair loss. Always let your doctor or nurse know about any side effects you have. We have more detailed information on some possible side effects of chemotherapy.
Radiotherapy treatment uses high energy rays to destroy the cancer cells. Radiotherapy for primary CNS lymphoma is given to the whole brain. Some people have radiotherapy after chemotherapy but not everyone will need it, particularly if you are older. If you are not well enough to have chemotherapy you may be treated with radiotherapy on its own. When lymphoma starts in the eye, radiotherapy can be given directly to the eye.
Side effects of radiotherapy
Your doctor and specialist nurse will talk to you about the immediate side effects and the risk of long-term effects. Newer ways of giving radiotherapy aim to give a higher dose of radiotherapy to the tumour without damaging the surrounding normal brain.
You will be very tired after radiotherapy and this can carry on for weeks or longer after it finishes. Try to get plenty of rest. The skin on your scalp may become itchy and red or darker and you will lose the hair on in the area being treated. This usually grows back again after 2-3 months. You will be given advice on looking after the skin on your scalp and coping with hair loss.
Steroids are used to reduce swelling around the lymphoma and may also shrink the lymphoma. They improve symptoms and help you to feel better. If you have raised pressure in the brain you will be treated with steroids straightaway. They are also used if a primary spinal lymphoma is causing pressure on the spine.
You usually have steroids as tablets, but they may also be given as an injection into a vein (intravenously). Possible side effects of steroids include indigestion, weight gain, restlessness, agitation and sleep disturbance. Taking steroids with food can help reduce indigestion. Your doctor may also prescribe medication to prevent it. It is very important to take them exactly as they have been prescribed.
If you have HIV, you will be advised to start highly active antiretroviral therapy (HAART). This improves survival in people with HIV-related lymphomas.
Surgery is rarely used to treat primary CNS lymphoma because there are often several tumours or the tumour is deep in the brain.
Medicines for seizures
If you have seizures (fits), you may be given a medicine called an anticonvulsant to help prevent them.