Follicular lymphoma treatment and side effects

This section is about specific treatments for follicular lymphoma. You might want to read our general information about how blood cancer treatment is planned and managing your treatment.

We also have some important information on staying safe if you’ve got blood cancer, covering things like risk of infection and vaccinations.

The treatment that’s best for you will largely depend on your symptoms as well as the stage of the follicular lymphoma.

Your healthcare team will always discuss your treatment options with you, explain why a certain treatment has been recommended and take your wishes into account when planning your treatment.

You can choose not to have treatment, even if your doctor recommends it, but you can’t insist on starting treatment if your doctor doesn’t think that it’s in your best interest. If you have any concerns about treatment you should discuss these with your consultant (specialist doctor) or clinical nurse specialist (CNS).

It’s rare that we can say that a person’s follicular lymphoma has been ‘cured’. However, it can be controlled for many years.

The aim of your treatment will be to get as good a response as possible in terms of shrinking the lumps caused by the lymphoma, with the fewest side effects.

Some people might not need to have treatment straight away. Some people don’t need treatment for some years, and some people never need treatment. This is known as being on ‘watch and wait’. Around half of the people diagnosed with low-grade non-Hodgkin lymphoma will be on watch and wait at first.

If you’re on watch wait, you’ll usually have appointments every three months in the first year after your diagnosis. As time goes on, your appointments will become further apart, as long as the disease isn’t progressing. You may have scans to look at glands inside your body and check for signs of the disease progressing, but only if your healthcare team thinks it’s necessary.

We have more information on watch and wait. Our online community forum is a good place to connect with other people on watch and wait.

If you need to start treatment, the common treatment options are explained below.

If you need treatment for follicular lymphoma, and you’re thinking about having children in the future, it would be good to discuss this with your healthcare team before you begin treatment. They will be able to advise you of your options to protect your fertility (your ability to get pregnant or father a child).

If you are a man having treatment, the risk to your fertility can be high. A common option for men is to have sperm frozen and stored.

If you are a woman having treatment, the risk to your fertility is low, but it may get higher as you get older. This is because some treatments can lead to an earlier menopause (when you stop having periods). You may be able to freeze and store eggs, embryos (fertilised eggs), or tissue from your ovaries (the organ where eggs are produced), before treatment starts.

If you have symptoms of follicular lymphoma and your healthcare team recommends you start treatment, your first treatment is likely to involve chemo-immunotherapy. Chemo-immunotherapy combines chemotherapy (anti-cancer drugs) with drugs that help the body’s immune system to find and attack cancer cells. The treatment is usually given into a vein (intravenously).

The most common chemotherapy drug combination for follicular lymphoma is CVP (cyclophosphamide, vincristine, and a steroid called prednisolone), or you may have a drug called bendamustine. Some people have other drug treatments.

With both CVP and bendamustine, treatment with a monoclonal antibody will also be recommended. Monoclonal antibodies stick to a specific protein on the surface of lymphoma cells. This marks out the lymphoma cells and helps your immune system to find and kill them. The most commonly used monoclonal antibody is called rituximab. Alternatively, you may have an antibody called obinutuzumab.

For some people who are less fit, chemotherapy might not be appropriate, but rituximab can still be given and can be effective on its own.

After you’ve finished your first round of treatment, you’ll usually be offered maintenance therapy, which aims to stop the follicular lymphoma coming back for as long as possible. For your maintenance therapy you’ll receive treatment with rituximab. You’ll have this treatment as a hospital outpatient (so you won’t need to stay overnight) every two months over a period of two years. This should give you a longer period of remission, when there is no sign of lymphoma in your body.

A small number of people (10-15% or around one in ten people) will have early-stage disease when they are diagnosed. Early-stage disease is stage IA or IIA, where the lymphoma is in one general area and you may have no symptoms aside from a lump. It’s also called localised lymphoma, which means that the glands affected by the lymphoma are close together.

If you have early-stage disease, your healthcare team will normally recommend having radiation treatment that’s given directly to the area where the lump is (localised radiotherapy). You’ll usually have this every day, with a rest at weekends, for a total of 12 to 17 days. Generally, you’ll have radiotherapy as a hospital outpatient, so you won’t have to stay in overnight.

After radiotherapy, if your healthcare team is confident that all the lymphoma cells have been killed, you might not need any more treatment. You’ll be monitored carefully.

If the radiotherapy hasn’t killed all the lymphoma cells, your healthcare team will discuss an alternative treatment plan with you.

Your healthcare team will monitor how well your first treatment has worked and will describe the result in one of four ways:

• Complete remission means all the lymphoma has gone and no lymphoma can be detected on scans. Sometimes the term ‘complete metabolic remission’ is used. This means that a PET/CT or other scan is entirely normal (or negative).
• Partial remission is a clear reduction in the amount of lymphoma, with more than half of the lymphoma being killed. Lymphoma is still detected on scans.
• Stable disease describes a reduction in the amount of lymphoma, with less than half of the lymphoma being killed. Lymphoma is still detected on scans.
• Progressive disease means that the lymphoma has grown.

This way of measuring remission can help your doctors decide if you need any more treatment. Most people will go into complete or partial remission after their first treatment.

Sometimes follicular lymphoma can develop into a faster-growing or high-grade non-Hodgkin lymphoma (NHL), usually a type called diffuse large B-cell lymphoma (DLBCL). This is called transformation. It happens in around 3% of people (around three in one hundred people) with follicular lymphoma each year. Doctors can check for transformation through a lymph node biopsy.

We have more information on treating transformed NHL.