Treating Non-Hodgkin lymphoma

If the disease is low-grade (slow developing) and you are well, a period of 'watchful waiting' is often recommended. It may be many years before you experience troublesome symptoms so in these circumstances there is no need to start treatment immediately.

If watchful waiting is recommended, you will be seen regularly for reviews and invited to come back at any stage if you feel your symptoms are getting worse.

Chemotherapy is a widely used treatment for NHL. Chemotherapy are drugs to kill fast growing cells. Cancer cells tend to be fast growing cells, however there are also fast growing healthy cells in the body. It is the effect of the chemotherapy on the healthy cells in the body which produces side effects. Chemotherapy can be delivered in tablets, through the vein or into the spine 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 may be used on its own, combined with biological/targeted therapy or combined with radiotherapy (see below).

Chemotherapy is usually given over a period of a number of months in the outpatient department, meaning you should not have to stay in hospital overnight and this is common to both low grade and high grade NHLs. However, there are some types of high grade NHLs which require more intensive treatments which would require a stay in the hospital. There may also be times when your symptoms or the side effects of treatment become particularly troublesome, and a short hospital stay may be needed.

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 healthy cells in the bone marrow therefore causing following problems:

• increased vulnerability to infections
• bleeding and bruising more easily
• anaemia or low red cells causing breathlessness or fatigue

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 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.

Other possible side effects of chemotherapy include:

• nausea and vomiting
• diarrhoea / constipation
• loss of appetite / alterations in taste
• mouth ulcers
• tiredness
• skin rashes
• hair loss
• infertility, which may be temporary or permanent (see complications of Hodgkin lymphoma treatment for more information)
• lung problems
• peripheral neuropathy or nerve damage
• heart problems

Most side effects can be managed and should pass once your treatment has finished. However some side effects may continue or develop in the future and are referred to as late effects of treatment. It is therefore important to adopt a healthy lifestyle by maintaining your weight, not smoking and being active, once your treatment has finished. This will help further reduce, the small chance of developing these late effects of treatment.

It is important to inform your team about any side effect particularly if troublesome, as there are often supportive treatments that can help

Radiotherapy is most often used to treat early-stage NHL where the cancer is only in one part of the body. It can also follow chemotherapy to mop up any remaining lymphoma cells or can also be used to treat troublesome symptoms such as pain if chemotherapy has not worked.

Radiotherapy treatment is normally given in short daily sessions as an outpatient, Monday to Friday, over the space of several days to weeks. You will not have to stay in hospital between appointments.

Before radiotherapy begins, the radiographer (radiotherapy specialist) will need to first carefully plan your treatment over one or more appointments. The radiographer uses a machine to 'map' out the lymphoma and decide what parts of your body the radiotherapy should be directed at. This planning may involve making small tattoo marks on your skin or making a special cast to ensure that you are kept in exactly the same position for each treatment session.

Radiotherapy uses high energy x-rays to kill lymphoma cells and is a painless and quick procedure. It can however also produce side effects and this is due to healthy tissue being affected in the area being treated. These side effects can vary and will be directly related to the part of your body that is being treated. For example, radiotherapy to your throat can lead to a sore throat; while radiotherapy to your chest could possibly lead to a cough and shortness of breath.

Other common side effects include:

• sore and red skin in the treatment area
• tiredness
• nausea and vomiting
• dry mouth
• loss of appetite
• hair loss in the treatment area

Most side effects are temporary, but similarly as with chemotherapy treatment, there are also the small possibility of long-term side effects which may present years after the treatment has finished.

If you have a B cell NHL, you will also have a medication called rituximab which is a monoclonal antibody.

Rituximab locks itself onto the surface of B lymphocytes (lymphoma being an abnormal B lymphocyte) and stimulates the immune system to attack and kill these cells. It is usually given in combination with chemotherapy to make the treatment more effective.

For low grade NHL, you may also continue to have rituximab regularly for up to two years after initial treatment. This is referred to as rituximab maintenance which is a supportive measure to keep control of the low grade NHL.

Rituximab is administered directly into your vein over the course of a few hours.

Whilst the infusion is being given some patients may experience:

• flu-like symptoms, such as a headache, fever and chills
• rash
• low blood pressure
• wheezing and breathlessness
• tumour pain

You may be given additional medication to prevent or lessen these side effects and they should improve with following infusions as your body gets used to rituximab.

Other later side effects of rituximab can include:

• low blood counts
• infections

As rituximab has been so successful in treating non-Hodgkin lymphoma, scientists are working hard to make more monoclonal antibody treatments for lymphoma and some of these are already at an advanced stage in clinical trials. You may be asked if you want to participate in one of these trials during your treatment.

Steroid medication is commonly used in combination with chemotherapy to treat non-Hodgkin lymphoma.

The steroid medication is normally given as tablets, usually at the same time as your chemotherapy and given in short courses across a number of days.

Common side effects of short-term steroid use include:

• increased appetite, which can lead to weight gain
• indigestion
• problems sleeping
• feeling agitated or euphoric
• alterations in blood sugars

The side effects of steroid medication will usually start to improve once treatment finishes.

If your NHL does not resolve with initial treatment or comes back, you may require more intensive chemotherapy treatment. This will involve a stem cell transplant either from yourself, or possibly from a donor.

High grade NHL

After your course of treatment ends and your final scan is clear of lymphoma you will enter into a period of follow up. These will be arranged appointments with your team to monitor your recover post treatment.

If your NHL is considered curable and in remission, you will enter into our self-support management programme.

For the first year you will come to clinic for regular follow-up appointments at three monthly intervals. Thereafter your follow up will be triggered by yourself. During this time, you will be supported and educated by your clinical nurse specialist (CNS) to know what to look out for and when to seek advice.

It can sound very daunting, but there is much research to show that traditional follow up does not prevent your lymphoma from returning and most importantly symptoms and concerns are addressed more quickly if patients report them. Should this be the case, you would have fast and swift access into the lymphoma service for assessment.

After three years of remission you will also be discharged from the service.

Low grade NHL

All other NHL’s will follow regular follow-up. These appointments will start off being every few weeks or months but will become less frequent over time. We would not do scans for monitoring unless there was a particular need.