Low-grade NHL treatment and side effects

Updated 10 Aug 2017

Low-grade NHL develops slowly, so you may not need treatment. If you do, it could involve radiotherapy, chemotherapy and / or immunotherapy. People who don’t achieve remission with these treatments, or whose cancer comes back, may be offered a stem cell transplant as part of a clinical trial.

The treatment you have for low-grade non-Hodgkin lymphoma (NHL) depends on what stage your low-grade NHL is, and what symptoms you have when you’re diagnosed.

Some people with low-grade NHL might not need to have treatment. You may just have regular check-ups and careful monitoring of your condition – this is called ‘watch and wait’.

If you do need to have treatment, it can involve chemo-immunotherapy (anti-cancer drugs) and radiotherapy (radiation treatment). If you don’t respond to your treatment or if you relapse, you’ll have more treatment, which could involve more chemotherapy or a stem cell transplant.

Throughout your treatment, your medical team will always discuss your treatment options with you. You’ll be able to give your opinions and preferences and ask questions at any point.

Treatment planning

The treatment that’s best for you will depend on the stage of the low-grade NHL and your symptoms.

Your healthcare team will always discuss your treatment options with you, and explain why a certain treatment has been recommended. Your wishes will be taken 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 or clinical nurse specialist before making a decision.

Aims of treatment for low-grade NHL

It’s rare that we can say that a person’s low-grade NHL has been ‘cured’. However, it can be controlled for many years, and people can survive for many decades after their diagnosis.

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

Some people might not need to have treatment straight away, or they might not need to have treatment for some years. This happens to around half of patients – most will need to have treatment within two or three years.

If you don’t need to start treatment right away, you may feel anxious and this is completely understandable. It’s important to understand that being on ‘watch and wait’ won’t alter how effective your treatment is once you start to have symptoms. It’s important to remember that there’s no harm or disadvantage in delaying treatment if you feel well.

Risk of infertility with treatment

If you need to have treatment for low-grade NHL, and you’re thinking about having children, or considering having them at some point in the future, it would be good to discuss the risk to your fertility and your options to protect this with your healthcare team before you begin treatment.

For men, there can be a high risk of infertility if you have treatment. A common option for men is to have sperm stored.

For women, there’s a low risk of infertility if you have treatment. You might be able to have your eggs frozen or have embryo cryopreservation if you have a partner.

If you’re at an immediately pre-menopausal age, then there’s a risk that having treatment may start the menopause earlier.

Outlook

Every person is different, so your healthcare team are the best people to ask about your likely outlook (your prognosis). Your outlook will depend on what stage of low-grade NHL you have, what treatment you have and how the disease responds to treatment. Your consultant is the best person to ask about your outlook, as they know you and your treatment.

For most patients with low-grade NHL, the disease is slow to develop. It’s now the case that average survival rates are measured in decades. Some patients without symptoms may not even need treatment in the course of their lifetime.

Most patients will achieve remission, and might be in remission for a long time. However, it’s likely that the lymphoma will return at some point and you’ll need further treatment.

Treatment

What type of treatment you have depends on the stage of the lymphoma. Please note that stage 1B and 2B could be classed as early stage – but these are rarely seen in follicular lymphoma.

Early stage: stages 1A and 2A without symptoms

NHL at this stage is classified as early stage – this means that the lymphoma hasn’t spread and you’ll have no symptoms aside from a lump at the time of your diagnosis. It’s also called localised lymphoma, which means that the glands affected by the cancer are close together. Only a small number of patients will fit this description when they’re diagnosed.

Your healthcare team will normally recommend having only localised radiotherapy (radiotherapy that’s only given directly to the area where the lump is). This is usually given over about 12–17 days.

If, after you have radiotherapy, 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, you and your healthcare team will discuss an alternative treatment plan with you.

Advanced stage with no symptoms

If the lymphoma has spread but you don’t have symptoms when you’re diagnosed, your consultant might recommend that you don’t start treatment immediately – this is called ‘watch and wait’. Instead, you’ll have regular appointments with your healthcare team and you’ll be carefully monitored.

In the first year after your diagnosis you’ll usually have appointments every three months. In the second year after your diagnosis, you’ll have appointments every three to four months. After two years, there’ll then be bigger intervals between your appointments depending on whether the disease is progressing. You’ll have more scans that will look at glands inside your body, to find out if this is the case.

It can be hard to find out that you have cancer but that it won’t be treated immediately. If you have any questions or worries, do discuss them with your healthcare team. Our online community is also a good place to hear from other people going through the same thing.

Advanced stage with symptoms (or signs of progression)

If the lymphoma has spread and you have symptoms when you’re diagnosed, your initial treatment is likely to involve immuno-chemotherapy. Immuno-chemotherapy involves chemotherapy drugs given alongside an antibody treatment.

During immuno-chemotherapy you’ll take a combination of intravenous (given into a vein) chemotherapy drugs. This will either be with CVP, which stands for cyclophosphamide, vincristine and prednisolone (a steroid), or with a drug called bendamustine.

With both of these options, you’ll also receive rituximab. Rituximab is a biological therapy, which identifies a protein on the surface of the B cells which are affected by the lymphoma and kills them. Rituximab is an important part of nearly all treatment options for people with NHL.

Some older and frailer patients who can’t tolerate chemotherapy may receive rituximab alone, which can be effective.

At the moment, you take rituximab as an infusion (a drip into the vein), but in the future this may be replaced by subcutaneous (under the skin) injections.

Maintenance therapy following treatment

The aim of maintenance therapy is to delay the return of the low-grade NHL, and it’s now generally recommended as part of routine treatment.

For your maintenance therapy you’ll receive rituximab over the course of two years. After you have finished your treatment with chemotherapy, you’ll go into the hospital every two months to have your maintenance treatment. This will consolidate your treatment and should give you longer in remission – the average time to be in remission for is six or seven years.

Supportive care

You might need supportive care alongside your other treatment.

Supportive care involves dealing with complications of your illness or your treatment. This includes things such as dealing with nausea, preventing gout, avoiding and treating constipation, mouth care, blood transfusions, pain management and diet planning.

Watch Dr Robert Marcus, Consultant Haematologist, King's College Hospital, London, talk about treatment for low-grade NHL.

Transformation of low-grade NHL

There’s a possibility that low-grade lymphoma may change its nature and become a faster-growing lymphoma called high-grade NHL. Doctors can check this through a lymph node biopsy.

This is called transformation, and can happen in around 30% of patients. If this is the case, you’ll be treated as someone with high-grade NHL.

Treatment of transformed low-grade NHL

About a third of people with low-grade NHL will go on to develop high-grade NHL. In these cases, the low-grade NHL will usually transform into diffuse large B-cell lymphoma (DLBCL), which is the most common form of high-grade NHL. Even if the low-grade NHL has transformed, it’s unlikely that the high-grade NHL will completely replace all of the low-grade disease.

Your treatment will be focused on treating the high-grade NHL:

  • If you’ve been on ‘watch and wait’ and have never received chemotherapy, your recommended treatment will be R-CHOP chemotherapy.
  • If you’ve had chemotherapy before, you might be offered an alternative chemotherapy treatment, like ESHAP, ICE, IVE or mini-beam (used with or without antibodies).
  • You may receive an autologous (own cell) stem cell transplant at the end of your treatment, if you’re fit enough and your lymphoma responds to the chemotherapy.

If your treatment is successful, you’ll be in complete remission of the high-grade NHL. While your treatment plan will also be effective against the low-grade NHL, it’s likely that the low-grade disease may come back in the future. If this happens, then your disease will be controlled using treatments designed for low-grade NHL.

Side effects of low-grade NHL treatment

Most people who have low-grade NHL won’t have major side effects. Often people can tolerate the treatment quite well.

If you do have some side effects from your treatment, they’re usually temporary and often go away when you’ve finished your treatment.

Possible side effects of treatment for low-grade NHL include:

  • achy feelings,
  • diarrhoea,
  • skin rash,
  • constipation,
  • extreme tiredness,
  • hair loss (alopecia),
  • infections,
  • fever,
  • bruising,
  • risk of bleeding,
  • shortness of breath,
  • mouth sores,
  • nausea (feeling sick),
  • upset stomach and vomiting,
  • poor appetite (loss of taste),
  • weight changes, and
  • infertility.

If you have any side effects from your treatment, let your healthcare team know. Often they’ll be able to help you manage them – for example, if you’re feeling sick, you’ll be prescribed anti-nausea drugs.

Watch Dr Robert Marcus, Consultant Haematologist, King's College Hospital, London, talk about treatment for low-grade NHL.

Remission

Your healthcare team will measure your body’s response to your initial treatment. The result of your treatment will be described to you in one of four ways; this way of measuring remission can help your doctors decide if you need any more treatment:

  • Complete remission – when all the lymphoma has gone and there’s no detectable evidence of lymphoma in your scans.
  • Partial remission – a clear reduction in the amount of lymphoma (with more than 50% of the lymphoma being killed) but it’s still detectable in scans.
  • Stable disease – a reduction in the amount of lymphoma (with less than 50% of the lymphoma being killed) but it’s still detectable in scans.
  • Progressive disease – when the lymphoma has grown.

Most patients will have a good response to their initial treatment and will achieve a complete or partial remission.

Relapse and refractory low-grade NHL and its treatment

Unfortunately, even in cases of complete remission, the low-grade NHL will come back. This is called a relapse.

If you’ve relapsed, your treatment will depend on how long it’s been since you were diagnosed. The longer you have been in remission before you relapse, the better your outlook is likely to be.

Intermediate relapse

If the disease comes back less than five years after your first diagnosis, you’ll have several treatment options. They will usually include further chemotherapy. Your healthcare team may also want to discuss the option of following this with a stem cell transplant.

Late relapse

If the disease comes back more than five years after your first diagnosis, you may be able to have very similar treatment to what you’ve already had. You may also take some trial drugs as part of your treatment.

Refractory disease

Sometimes, the lymphoma will not respond to initial treatment and the patient won’t achieve a remission. This is called refractory disease.

Refractory NHL is quite rare – less than 20% of patients will get refractory NHL. In this case, you’ll have experimental therapies, like trial drugs, and you may have a stem cell transplant.

Treatment of relapsed and refractory low-grade NHL

 

Trial drugs

If you take part in a clinical trial for low-grade NHL, doctors will typically be testing a novel agent (or new medicine) in combination with existing drugs which are used to treat the disease.

There are a number of studies looking at the effectiveness of these trial drugs, which include:

  • idelalisib,
  • ibrutinib, and
  • antibody-drug conjugates (ADCs).

These are low-toxicity drugs. This means that they have fewer side effects than other drugs. At the moment these drugs are only available if you enter a clinical trial. However, you’ll be able to discuss your options with your healthcare team, and if they think that these trial drugs are appropriate for you, you may be able to join one of these trials.

> Download or order our booklet 'Your guide to clinical trials' to learn more about what a trial might involve.

Stem cell transplant

For some patients, an autologous stem cell transplant might be an option. This is a stem cell transplant using your own stem cells. You’ll have high-dose chemotherapy, sometimes combined with radiotherapy, followed by a transplant with your own stem cells.

A stem cell transplant isn’t a routine option for people with low-grade NHL. They’re usually only recommended as an option for patients who have had an early relapse, and are medically fit enough to have this type of intensive treatment. This is because this treatment brings more side effects than other treatment options.

An allogeneic stem cell transplant (a transplant using donor cells) may offer a chance of a cure. This is only an option for younger, fitter patients. If one of these stem cell transplants is an option for you, your healthcare team will discuss the potential benefits and risks of this with you before you make a decision.

> Download or order our booklet 'The seven steps: blood stem cell and bone marrow transplants' to find out more about this treatment.

Follow-up

Your follow-up arrangements will depend on what type of treatment you have and how well the cancer responds to treatment. Your healthcare team will explain how often you should come for follow-up checks.

It’s very important that you don’t miss these appointments. A normal pattern for patients with low-grade NHL is to have periods of remission followed by relapses, so your doctor will need to monitor you in case this happens. It’s also important to report any new signs or symptoms, like swollen glands, to your healthcare team, so that they can investigate these.

If you’ve responded well to treatment, it might be many months, or even years, before you need any more treatment.

 

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