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Chemotherapy for lymphoma Almost everybody who has lymphoma will need to have treatment with chemotherapy at some time. There are many different types of chemotherapy used to treat lymphoma and everybody’s experience will be different. But if you find the prospect of having chemotherapy daunting, you are not alone. Many people find it helps to learn a little more about their planned treatment and what to expect. This information aims to answer the main questions that people being treated with chemotherapy for lymphoma might ask: ●
What is chemotherapy?
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Why is chemotherapy used to treat lymphoma?
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How is chemotherapy for lymphoma given?
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How will I feel while I am on treatment?
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What can I do to help myself during treatment? Please note: it would be impossible to mention all chemotherapy treatments given for lymphoma, but the drugs in any of the regimens mentioned are listed in the table on page 20. Your hospital will be able to supply you with more details of your specific treatment if you wish.
What is chemotherapy? Chemotherapy means ‘treatment with drugs or medicines’. Chemotherapy for cancer or lymphoma means treatment specifically with drugs that kill cancer cells. These are known as ‘cytotoxic’ drugs: ‘cyto’ means ‘cell’ and ‘toxic’ means ‘poison’.
How does chemotherapy work? Lymphomas develop when lymphocytes start to grow out of control and build up in lymph nodes or other organs. This is due to the lymphocytes dividing more often than normal and/or not dying off when they should. Chemotherapy drugs can work either by stopping cancer cells dividing or by triggering them to die, or both. The problem with many of the traditional drugs is that they stop cancer cells dividing but can also stop normal cells dividing. It is this that causes many of their side effects. In recent years several new therapies have been developed that more specifically target just the cancerous cells and some of these are already available for the treatment of lymphoma.
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Traditional chemotherapy When a cell divides it goes through what is known as the ‘cell cycle’, which makes two new cells out of one. The cell cycle has a number of different phases (steps). Some cytotoxic drugs work only on cells in one phase of the cell cycle, so any cells in the affected phase are unable to divide. Other drugs work on any cell that is dividing no matter what phase it is in. There is little or no effect on cells that are not dividing at the time the chemotherapy is given. Chemotherapy is very often given as a ‘combination regimen’, which means several drugs are used together. To kill as many cells as possible in one go, drugs that work in different phases of the cell cycle are usually combined. Combination regimens are often known by a series of letters such as the initials of the drugs being used (eg ABVD) and sometimes these spell out a word (eg CHOP). You will find the names of the drugs in any regimens mentioned in this information in the table on page 20. Even when several chemotherapy drugs are used together, some of the cancerous cells will not be affected. This may be because they were not dividing or were not in a particular phase at the time of the treatment. To kill these unaffected cells, the drugs must be given again, usually several more times. The problem is normal cells are also damaged every time chemotherapy is given. Those cells that naturally divide most often are most likely to be damaged. These include cells within the bone marrow, which make blood cells, within hair follicles and lining the mouth and bowel. To allow time for these normal cells, especially the bone marrow cells, to recover, the chemotherapy is followed by a ‘rest period’. These repeated doses of chemotherapy and rest periods are known as ‘cycles’ of chemotherapy. The following diagram shows the first three cycles of a 3-weekly schedule with the intravenous drugs given on the first day of each cycle, followed by 5 days of oral prednisolone (steroid) then a rest period of 16 days. R-CVP therapy
Cycle number
Week
*
*
*
*
Δ
Δ
Δ
1
Rituximab (intravenous)
2
3
4
5
Cyclophosphamide (intravenous) Prednisolone (oral)
6
7
Δ
8
9
Vincrisne (intravenous)
Rest period
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Targeted therapy Targeted therapies are those that have been developed to target something that is specific to the lymphoma cell. For example, they may target: ●
a protein found on lymphoma cells more than on normal cells
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an action that is more important within lymphoma cells than within normal cells
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the mechanism that stops lymphoma cells dying when they should.
Targeted therapies are useful because: ●
they kill lymphoma cells in different ways from traditional chemotherapies
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they have little or no effect on normal cells, so do not have the same side effects.
Where do chemotherapy drugs come from? Many cytotoxic drugs have been developed from substances that occur naturally, often in plants. A good example of this is the periwinkle, the flower we use in our logo, from which we get ‘vinca alkaloids’. The drugs vincristine and vinblastine, both of which are used to treat lymphoma, are types of vinca alkaloid. Traditional chemotherapies were mainly discovered by trial and error, with laboratory testing of which cancer cells were killed by which drug. Many of the drugs used to treat lymphoma can treat other types of cancer too. Most drugs used today are substances that have been slightly changed (modified) in the laboratory. These changes aim to make them more toxic to cancer cells or less toxic to normal cells. In contrast, targeted therapies have generally been developed for a particular type of cancer. They rely on understanding what it is that makes a particular cell cancerous. As scientists gain more knowledge of this, so drugs that target the differences between normal and cancer cells are being designed. Any new drugs go through a very long period of careful testing. This begins with tests on cells in laboratory test tubes. For the most successful drugs only, it ends, usually many years later, with clinical trials (medical studies in people with lymphoma).
Why is chemotherapy used to treat lymphoma? Chemotherapy is in most cases the best treatment for lymphoma. This is because most lymphoma cells are easily killed by cytotoxic drugs. But also lymphomas are different from many other cancers as they are cancers of blood cells, which naturally move around our bodies. Because of this, most lymphomas are already in many places by the time they are diagnosed. Surgery will not be able to remove all the cancerous cells, most of which cannot even be seen. Even for those lymphomas that appear to be in one area only, surgery will usually leave some cells behind. These lymphomas are usually better treated with localised radiotherapy (X-ray treatment) but even then chemotherapy is often given too. The advantage of chemotherapy is that it gets to almost all areas of the body so will treat the lymphoma wherever it is. It will also treat lymphoma whether it is a lump Chemotherapy for lymphoma
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of cells together or one or two cells on their own. As a result, chemotherapy can successfully treat many lymphomas, even some which are advanced. Over the years different chemotherapy regimens have been found to be better for certain types of lymphoma. Typically lymphomas that are fast growing need more intensive chemotherapy. Your doctors will choose the best regimen for you taking into account: ●
your lymphoma type
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the areas of your body that are affected
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the symptoms or problems that your lymphoma is causing
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your general health and fitness.
How is chemotherapy for lymphoma given? Chemotherapy for lymphoma can be given: ●
by mouth (orally)
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into a vein (intravenously)
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into the cerebrospinal fluid, which surrounds the brain and spine (intrathecally). It is quite likely only some of what is described here will apply to you. Ask your hospital team if you are unsure what your regimen will involve. You may want to skip the parts in this section that don’t apply to you.
Oral chemotherapy Oral chemotherapy is treatment that is taken by mouth, in the form of either tablets or capsules. You may be taking chemotherapy that can all be given orally. In this case, your treatment will be prescribed by the doctors in the outpatient clinic. You will probably collect it from the hospital pharmacy to take home with you. Alternatively, you may need to take oral chemotherapy as part of a combination regimen. In this case, you’ll probably be given the medicines by the nurses when you attend for the intravenous part of your treatment. The person giving you the medicines should tell you what to take and when. This information will also be on the boxes or bottles containing your treatment. You may also be given special instructions or advice about how you should store the tablets or capsules and/or how you should take them. It is important that chemotherapy drugs are not handled by anyone other than the person who is taking them. If you are a carer assisting someone to take their chemotherapy, you should wear gloves when handling any tablets or capsules.
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Intravenous chemotherapy Intravenous chemotherapy means that drugs are given into a vein. This is the commonest way that people receive chemotherapy for lymphoma. Most often intravenous chemotherapy for lymphoma is given through a cannula. This is made up of a soft plastic tube and a needle within it that allows the tube to be put in. Your nurse or doctor will insert the needle into a vein, usually on the back of your hand or in your lower arm. The needle is then removed, leaving only the plastic tube within the vein. This is secured with an adhesive dressing to keep it clean and in position. Usually a cannula is taken out before you go home. Some intravenous drugs are given as a ‘bolus’ or a ‘push’ dose. This means that the nurse injects the drug through the cannula over a short period of time. Other intravenous drugs are given as an infusion (a drip), where they are mixed with another fluid in a bag. The bag of fluid is set up to drip through the cannula over a specified period of time. The bag needs to be kept higher than your arm, so will usually be hung on a metal pole. Often the pole is on wheels, so you can walk around while the drip is connected. You might have more than one bag going at the same time. You might need to go to the toilet more often as you may be given a lot of liquid over a relatively short time. Drugs given as infusions are often controlled with pumps (small machines to maintain the correct speed of flow) that can be attached to the pole. They may ‘beep’ from time to time to let the nurses know if something is not right. This might sound alarming at the time, but don’t worry as the drip will stop until the problem is sorted out. Intravenous chemotherapy can sometimes make your arm sting. Do tell the nurse if you feel any discomfort while receiving your treatment. Very occasionally the drug may not go into the vein but may go into the surrounding tissues and cause damage. This is known as 'extravasation'. The nurse giving your chemotherapy will be trained in how to deal with this complication if it should occur. Some people will need to have their intravenous chemotherapy given through a central venous catheter (a more permanent intravenous tube) instead of a small cannula. These make it easier to give drugs and other fluids over a longer period of time and to take blood samples without the discomfort of repeated needles. Mostly they are used for people having certain types of chemotherapy, usually those spread over longer periods of time. They may also be used for people who have particular difficulties with normal cannulas being put in. There are two types of central venous catheter: a PICC line (peripherally inserted central catheter) or a tunnelled central line. Both types of line end in a bigger vein that is further inside your body. The line is inserted during a small operation that usually requires a local anaesthetic. Blood is prevented from flowing back into the line either by a tiny valve at the end of the line or by a plastic clamp on the external part of the line.
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A PICC line usually goes in through a vein in your arm at the level of your elbow. It is held in place by a dressing or sometimes a few small stitches. A tunnelled central line is usually positioned on your upper chest. Part of the line runs in a tunnel under your skin, which reduces the risk of infection. It will be held in place, at least at first, by a few small stitches and will be covered with a clear dressing. You may hear these called a Hickman® or Groshong® line. A tunnelled central line
The line is inserted into the chest here
Superior vena cava
Catheter tunnelled under skin
Tip of central catheter
Heart
The line comes out here Clamp
Connection for drips or syringes
Central venous catheters are designed to stay in place for long periods, hopefully for all of your treatment. The line will be covered to protect it when you go home and you will be given instructions about how to care for it. Despite this, lines can become infected. If you develop a temperature, feel shivery or if the area around the line becomes red or sore, you should contact your hospital immediately. Another complication of central venous catheters is that they can sometimes trigger a blood clot to form around them. People with lymphoma or other cancers also have a higher risk of forming blood clots in their legs, especially if they are not very mobile. Contact your hospital immediately if your arm or leg becomes swollen, painful or red or if you suddenly develop shortness of breath or chest pain.
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Intrathecal chemotherapy Intrathecal chemotherapy is an additional treatment that is given into the cerebrospinal fluid. This is the fluid that cushions and protects the central nervous system (the brain and spinal cord). Intrathecal chemotherapy is a way of bypassing the ‘blood–brain barrier’, which stops many drugs crossing from the bloodstream into the cerebrospinal fluid. It is usually given by a senior doctor during a lumbar puncture. Lumbar puncture
Sometimes intrathecal chemotherapy may be given through a device called an Ommaya reservoir. This may be put in to avoid the need for lots of lumbar punctures. This type of treatment may be used to treat lymphoma that has been found in the central nervous system (CNS). Alternatively, it may be used as a preventive therapy, particularly in certain types of high-grade lymphoma, which is known as ‘CNS prophylaxis’. Please contact our helpline (0808 808 5555) for further information if either of these situations applies to you.
Will I need to be in hospital for my treatment? The commonest types of chemotherapy for lymphoma, including R-CVP, R-CHOP and ABVD, are usually given in a day-care unit. In some areas they may be given in a mobile chemotherapy unit. Some chemotherapy, such as chlorambucil (Leukeran®), is entirely oral and you may need only to visit an outpatient clinic. Other more intensive regimens, such as R-CODOX/M-IVAC, can only be given to people who are inpatients. Your hospital team will be able to tell you where your treatment will be given. No matter where your chemotherapy is being given, you may still need to be admitted to hospital if you develop problems such as infection (see page 9).
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What other drugs will I have with my chemotherapy? It is very likely you will need to have drugs other than the actual cytotoxic drugs as part of your chemotherapy. These often form important parts of your chemotherapy regimen.
Steroids Steroids are included in many chemotherapy regimens for lymphoma, most often as tablets called prednisolone. Steroids help to kill lymphoma cells, although on their own any effect would be very short term. They can also help to reduce nausea and may improve your appetite and energy levels. Their disadvantages may include: ●
difficulty sleeping – always take your steroids early in the day
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weight gain – this may or may not be a good thing for you
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indigestion – you may be given a tablet to help with this
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mood swings and irritability – let your hospital team know if these are troubling you
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raised blood sugar levels – if you’re already diabetic or on the border for developing diabetes, this may cause problems and you will probably need advice from a diabetic specialist. Symptoms to look out for are thirst, passing lots of urine, having frequent infections (especially thrush) and blurring of vision.
Rituximab Rituximab is a type of targeted therapy. It is a monoclonal antibody that attaches to the CD20 protein on the surface of B-cell lymphoma cells. It is very often given in combination with chemotherapy as it leads to improved success rates. Please contact our helpline if you would like more information about rituximab therapy (0808 808 5555).
How is chemotherapy likely to make me feel? It is not possible to say exactly how you will feel while having chemotherapy or in the months afterwards. This is partly because it will depend on what drugs you are having and at what dose. But even people having the same drugs can feel quite different. Your hospital team will be able to tell you what your treatment involves and what side effects you are likely to have. Many side effects are short term and will go away once you stop treatment or within a few months. It is important that you let your team know about any symptoms you have as often there are things that can help you. There may also be things that you can do to help yourself (see pages 14–18). Unfortunately a few side effects may be long term or even permanent. Your team will discuss any possible long-term effects with you before you start treatment. The following are some of the possible side effects. It is important to remember you won’t necessarily develop all the problems you’ll be warned about or read about in Chemotherapy for lymphoma
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this leaflet. Some people are lucky enough to have relatively few side effects. Despite this, many people find it helps to know what might happen and what it could mean in advance. Also, remember whether you have a few side effects or many is not a sign of whether your chemotherapy is or isn’t working. You don’t have to read everything in this section at once. You may prefer to read the details of only those side effects that your team have told you are likely with your specific treatment. You could always come back to further parts of this section later if you develop a particular side effect.
Side effects seen with many different drugs Low blood counts The most important side effect of chemotherapy is damage to the bone marrow, which is a sponge-like tissue in the centre of some of our bones. The bone marrow is responsible for producing the body’s blood cells. These include: ●
white blood cells to help fight infection
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red blood cells to carry oxygen around your body
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platelets to form a blood clot and stop you bleeding.
When chemotherapy drugs affect dividing cells, they stop the normal bone marrow producing the new blood cells you need. You will have regular blood tests taken during your treatment to check your blood counts.
Neutropenia he most important white blood cell is called a neutrophil. You may hear a low white T cell count referred to as neutropenia, meaning the number of neutrophils is low. Neutropenia is common after many types of chemotherapy and means you will be more at risk of infection. The neutrophil count tends to be lowest about 7–10 days after each dose of chemotherapy, but it can take some time to recover. Infections when your neutrophil count is low can be serious and may even be lifethreatening. You should be given phone numbers to contact at any time of the day or night. You should call immediately for advice if you develop signs of an infection, such as: ●
temperature above 38°C
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fever, chills and sweating
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feeling generally unwell or disorientated
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cough or sore throat
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redness or swelling around lines or sores on the skin
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mouth sores and ulcers
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diarrhoea
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burning sensation when passing urine.
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Even without any infection, your next cycle of treatment cannot be safely given until your blood count has recovered. A low neutrophil count may sometimes lead to a delay in your treatment. This can be frustrating but it could be dangerous to go ahead too soon. Your doctors may suggest you have drugs known as growth factors or G-CSF to help boost your white cell count. Growth factors are hormones that occur naturally in our bodies and help the bone marrow to produce more white blood cells. G-CSF is given as an injection into the fatty tissue under your skin (known as a 'subcutaneous' injection). Most people learn to give the injections themselves or a relative may be taught how to give them. The injections use a tiny needle. They are given into your stomach, the top of your leg or the top of your arm. -CSF can cause side effects such as flu-like symptoms, back pain and headaches. G You should ask your hospital team about what you can take to help with this. The injections can sting. If your brand needs to be kept in the fridge, it may help to take the injection out 20 minutes before you use it. Let your hospital team know if you have any unusual symptoms or feel unwell during your growth factor treatment.
Anaemia A shortage of red blood cells is called anaemia. Anaemia may make you feel short of breath, or extremely tired and fatigued. Sometimes lymphoma itself may cause anaemia. When anaemia is due to chemotherapy, it usually becomes a problem only after a few cycles of treatment. If it becomes bad enough, your doctors may suggest you have a blood transfusion to ease your symptoms for a while. Anaemia usually recovers gradually in the weeks following treatment.
Thrombocytopenia Platelets are the tiny fragments that form a blood clot and help to stop you bleeding. A shortage of platelets is called thrombocytopenia. The risk of bleeding remains small unless the platelet count gets very low. This tends to happen mainly with the most intensive types of chemotherapy. If the doctors feel your risk of bleeding is very high, you may be given a transfusion of platelets to reduce the risk. This is a temporary measure as the effect lasts only a few days. Whatever type of chemotherapy you are having, you should contact your hospital team for advice immediately if you develop: ●
bleeding (for instance in your mouth, from your nose, in your stool or urine)
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unusual and unexplained bruising.
As with your neutrophils, it is important that you have enough platelets again before your next cycle of chemotherapy is given. This is just a matter of waiting for your bone marrow to recover. Thrombocytopenia usually recovers quickly once your chemotherapy is completed. Please contact the helpline if you would like to talk more about particular side effects or how your treatment has affected you (0808 808 5555).
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Nausea and vomiting This is probably one of the first side effects people think of when they are told they need chemotherapy. It is true that after treatment with many chemotherapy drugs you could feel sick and possibly even vomit. But anti-sickness drugs (antiemetics) often work very well and can control or prevent nausea for most people. Your antiemetics will be chosen based on the type of chemotherapy you are having and how likely it is to make you sick. You may need several different antiemetics both before and after your treatment that work in slightly different ways. If you do feel sick, make sure you tell someone because sometimes a change of antiemetic is needed.
Hair loss This is another side effect people often think about when told they need chemotherapy. Hair loss can happen with many of the regimens and drugs used to treat lymphoma (eg CVP, CHOP and ABVD). But some of the oral therapies (eg chlorambucil) are unlikely to cause major hair loss. Hair loss can vary from thinning to complete loss. With more intensive regimens, there may even be hair loss from other areas of your head and body, including eyebrows and eyelashes. If you are going to lose your hair, it will typically start to fall out within a couple of weeks of starting treatment. Usually it falls out gradually but for some people it can happen quite suddenly. This can be distressing but it helps if you are prepared. Your hair will usually start to grow back within a month or two of completing your treatment. Some people find that their hair has changed when it grows back, perhaps being curlier or a slightly different colour. It might take 6–12 months for your hair to return to its previous thickness. You may hear about a method called 'scalp cooling', which uses a 'cold cap' to reduce hair loss. This is not recommended in lymphoma because lymphoma cells in the bloodstream could be in the scalp and wouldn't be killed.
Sore mouth Many chemotherapy drugs cause soreness in the mouth (known as 'mucositis'). This is because the cells that line the mouth need to divide often and are damaged by chemotherapy. Mucositis can be painful and can make you more prone to mouth ulcers and infection. You will be given advice about how to look after your mouth. This may include using non-alcohol-based mouthwashes and/or treatments to prevent infections such as thrush (candida). Tell someone if your mouth feels sore as there are often things that can be done to help.
Change in taste, appetite and weight You may find that foods taste different or perhaps metallic while you are having chemotherapy. You may also lose your appetite, although if your regimen includes steroids it is possible you'll actually eat more. Poor appetite and change in taste along with nausea may lead to a loss of weight while on chemotherapy. This will improve once your treatment is finished but if it is causing a problem it may help to see a dietitian. Chemotherapy for lymphoma
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Fatigue Fatigue is one of the commonest symptoms reported by people with lymphoma. Often it is difficult to know whether it is due to the lymphoma itself or a side effect of treatment. In fact it is likely to be caused by a combination of factors, which may also include anaemia, not eating well or feeling depressed. Fatigue is not like normal tiredness. It can mean that you find it difficult to concentrate or make decisions. It may make you short-tempered. You might sometimes feel too tired to do even simple things, like watching television. Fatigue can be difficult to describe and you may find that other people (even your doctors) don’t really understand it. Unfortunately many people find that it may be months after their treatment before their fatigue really improves.
Skin and nail changes Your skin may become dry or more sensitive during treatment and it is important you take care in the sun. You should wear a high SPF (sun protection factor) cream when outdoors as you may burn more easily during treatment and for several months afterwards. Your nails may also become more brittle or darker, and may develop ridges.
Side effects seen with certain drugs only Peripheral neuropathy Some chemotherapy drugs can cause damage to the nerves that carry information about touch, temperature and pain sensation. They can also damage the nerves involved in muscle movement. This is called 'peripheral neuropathy'. Peripheral neuropathy is usually related to particular groups of drugs. These include the vinca alkaloids used in many lymphoma regimens (eg CVP, CHOP, ABVD and CODOX) and platinum-based drugs (eg in ESHAP or ICE). The new targeted drug bortezomib (Velcade®) is also known to cause peripheral neuropathy. The nerves in your hands and feet will most commonly be affected by peripheral neuropathy, but other places might be affected too. It can cause: ●
pins and needles
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pain
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numbness
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clumsiness
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problems with balance
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increased sensitivity to heat
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constipation.
Symptoms of peripheral neuropathy usually develop soon after you start treatment, but not everyone will get them. If you do have any of these symptoms, you should tell your doctors or nurses before you have your next dose of chemotherapy. They might want to make a change to your treatment to prevent these problems getting worse. Chemotherapy for lymphoma
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For most people the symptoms of peripheral neuropathy will be temporary, lasting weeks or months after their chemotherapy. Unfortunately nerve repair is slow, so for a few people with more significant nerve damage, the symptoms may be long term or even permanent.
Bowel changes Some chemotherapy drugs may cause diarrhoea but typically this only occurs when they are used in larger doses (eg high-dose cytarabine or methotrexate). Other drugs, especially those that cause peripheral neuropathy, may cause constipation. This may be made worse if you are weak, not eating well, not very mobile or on strong painkillers.
Flu-like allergic reaction This tends to happen for certain drugs only, either during the infusion or within the first few hours afterwards. Symptoms may include fevers, shivering, headaches, aches and pains, and a rash. Rarely more severe reactions may occur. Allergic reactions may be seen with antibody therapies (eg rituximab) and with bleomycin (eg in ABVD) or platinum-based drugs (eg in ESHAP or ICE). For these drugs, you may be given a small test dose first or the treatment may be started very slowly. Sometimes other drugs, such as steroids and antihistamines, are given prior to treatment to reduce the risks.
Bladder problems The drugs cyclophosphamide (particularly in a high dose) and ifosfamide (Mitoxana®) can cause irritation to and bleeding from the lining of the bladder and the kidneys. You will need to drink lots of extra fluid with these treatments. You may also have extra fluid through your drip. A drug called mesna (Uromitexan®) can be given with ifosfamide and with cyclophosphamide when used at a high dose to prevent bladder and kidney complications. If you notice blood in your urine after having chemotherapy, you should tell your medical team straight away.
Hearing changes The drug cisplatin (eg in ESHAP) may cause hearing loss, especially for high-pitched sounds, or tinnitus (a continuous ringing or buzzing in the ears). It is important to tell your medical team if you notice any changes during your treatment.
Heart problems The group of drugs known as the anthracyclines, which includes doxorubicin (eg in CHOP and ABVD), can cause serious damage to the heart. Often the problems may develop many years later. Your heart function may be tested before you start treatment. The drugs may be avoided if your heart function is not good or if you have a history of previous heart trouble. Even if your heart is normal, your doctors will be careful not to prescribe more than the safe maximum dose.
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Lung problems Lung problems are a recognised side effect of bleomycin (eg in ABVD). Your lung function may be tested before you start treatment. The drug causes inflammation within the lungs, which can result in cough and shortness of breath. You should report any symptoms immediately as your treatment may need to be changed so that there is no permanent damage.
Long-term side effects Fertility Depending on your stage of life this may not be an issue for you but some treatments for lymphoma may reduce your fertility. This is due to damage to the testes or ovaries. It will not be possible to say for certain how your fertility might be affected. Typically, higher doses of chemotherapy such as those used in stem cell transplants are more likely to affect fertility. Some regimens (eg ABVD) will leave most people still able to have children. In women, reduced fertility is related to age, with younger women more likely to remain fertile. Women may find that their periods become irregular or stop altogether during treatment. Afterwards, their periods may return to normal or may remain irregular and some women may undergo an early menopause. Your doctors should discuss the risks of your type of treatment and any options with you before you start treatment. Men may wish to consider sperm storage before they start treatment. The options for women are more limited, but you may be referred to a fertility specialist if you would like to discuss these further and there is enough time before you start chemotherapy Although your chemotherapy may make you less fertile, you should still use contraception while you are having treatment (see page 18 for more information).
Second cancers People who have had successful chemotherapy have a slightly higher risk of developing another form of cancer, including leukaemia, some years later. Many trials are now looking at ways of reducing the amount of chemotherapy given, the aim being successful lymphoma treatment but with fewer second cancers.
How can I help myself while having chemotherapy? It is important that you look after yourself well while you are on chemotherapy, not just physically but also emotionally. You will probably find it helps to know something about your lymphoma and the treatment you will have. This can help you to feel more in control and allow you to take part in decisions about your care. Make sure also you let your hospital team know how you are feeling. They won’t always ask and might assume you are OK if you don’t say anything. Please contact our helpline (0808 808 5555) if you would like to talk more about any of the following suggestions. Chemotherapy for lymphoma
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General suggestions Ask questions Don’t be afraid to ask questions. Even if you think someone has already tried to explain something to you, if you don’t understand then ask. And don’t worry that your question may seem silly because, whatever it is, you almost certainly won’t be the first to ask. Your hospital team and your GP are there to help you and would much prefer you not to worry unnecessarily.
Know how to get help Problems often develop out of working hours. You should be given phone numbers to contact at any time of day or night if you start to feel unwell. Make sure you keep these easily to hand, especially if you’re away from home. You may not always be able to talk to someone who knows you, so it helps if you can tell people what type of lymphoma you have and what treatment you are on. You may be given this information on a card, but if not, ask someone to write it down for you. And don’t worry about remembering all the names of the drugs, everyone will know what you are on if you say CHOP, for example.
Look out for signs of infection and act quickly Keep a thermometer at home and with you if you are out, and know how to use it. Keep the emergency contact numbers handy and make sure a relative or friend knows where to find these if needed. Always ring for advice if you are concerned. A high temperature (above 38°C) always needs to be reported immediately as infections can be serious. Be aware that feeling hot, cold, shivery or generally unwell without a temperature could still be a sign of infection, especially if you are taking steroids.
Try to avoid getting infections You are likely to be more prone to infections and may be less able to shake them off while on chemotherapy. You can’t avoid all infections, no matter what you do, but being sensible can reduce the risks: Stay away from people with infections such as colds, flu, diarrhoea, vomiting and chickenpox, if possible. Stay away from crowds, so avoid cinemas, busy shops, and rush-hour buses and trains, for example.
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Wash well and regularly. Wash your hands before meals, after using the toilet, after using public facilities, or after handling pets. It is best to wear gloves when gardening or dealing with pet litter trays.
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Food hygiene is very important. Make sure food is fresh and has been stored properly. Make sure it is thoroughly cooked and don’t reheat things. You may be advised to avoid certain food types that could put you more at risk of infection. This is often called a ‘neutropenic diet’. Your hospital team will advise you whether you need to take any special precautions, depending on your type of chemotherapy and how low they expect your blood counts to go. Further information is also available from our helpline (0808 808 5555).
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If you have a central line, make sure you follow the advice you are given on how to look after it. Contact the team immediately if there is redness, soreness, swelling or a discharge around the line.
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Invasive dental work is best avoided while you are on chemotherapy treatment. This is because you will be at increased risk of infection and/or bleeding. You should discuss with your hospital team if you have any problems with your teeth.
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Lifestyle issues Eating You may find it harder to eat well while on chemotherapy, but it is important you eat enough to you keep your strength up and vital that you drink enough liquids. Discuss whatever is stopping you eating with your team. There are often things that can be done to help nausea, sore mouth or difficulty swallowing. The following guidance may help if you are finding it difficult to eat or are losing weight: ●
Try to eat little and often and definitely at any time you are hungry, even if this isn't a mealtime.
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Have a ready supply of snacks or things that are quick and easy to prepare.
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Eat what you fancy, even if it is something you'd normally resist.
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Try different things too: you may prefer stronger tasting foods or something savoury instead of sweet. Try allowing food to cool a little before eating it warm rather than hot if your mouth is sore.
If you still aren't managing to eat much, nutritious drinks to supplement your diet may help. But this is best discussed with a dietitian or your hospital team first.
Smoking and alcohol If you are a smoker, this may be a difficult time to stop but do try to stop or cut down if you possibly can. Smoking makes you more prone to chest infections. These can become a real problem if your blood counts are low from chemotherapy and your immunity is down too. It could also increase your risk of developing a second cancer in the future. Alcohol is less of an issue as long as you drink in moderation and your liver is working well.
Exercise There is no doubt that taking some exercise can make you feel better during chemotherapy. If you didn’t exercise regularly before, just a gentle walk whenever you feel up to it may help. If you were someone who did exercise before, it may be best to check with your team. You may not have the energy for strenuous activity anyway but some things may not be advisable. For example, it might be best to avoid high-impact or contact sports if your platelets are low. Swimming in public pools may also put you at more risk of picking up infections. Chemotherapy for lymphoma
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Sleeping Although gentle exercise can help, rest and enough sleep are also important to how you feel. Sleeping can be difficult if you are taking steroids. Try to take all your steroids early in the day, before lunchtime if you possibly can. Take short naps in the day if you need to and allow yourself to rest when you feel tired.
More tips Coping with fatigue For many people with lymphoma, coping with fatigue is one of the hardest things. There may be things you can do to help yourself: ●
eat well
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try taking regular light exercise
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get plenty of rest throughout the day and aim for a good night’s sleep on a regular basis accept offers of help with day-to-day tasks and don't worry about the less important things that can wait, so you can save your energy for the things you want to do try to plan your activities, for instance arrange important things for when you have more energy
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make time to see friends and take part in normal social activities
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most importantly, make time for you.
Coping with hair loss It is important to remember that most likely you will have a full head of hair again around 6 months after your treatment has finished. In the meantime the following may help. Think about whether you might want to get a wig and discuss this with your hospital team. They can put you in touch with a wig technician but if you want to match your normal hair this needs to happen quickly. You may prefer to try hats and scarves to cover your head. Using make-up, jewellery and other accessories can also give you more confidence. When you do start to lose your hair it may be easier if you have already had your hair cut short. Wearing a hairnet or towelling turban to bed can also help to collect any hair you lose overnight.
Dealing with your emotions Dealing with a diagnosis of lymphoma and coping with chemotherapy is bound to take its toll on you (and your family) emotionally. Try to allow yourself the space and time you need to deal with this. Try not to keep your worries to yourself. Writing letters or emails, seeing a counsellor or complementary therapist, or joining a support group can all help you feel less isolated and more supported. You might like to see what people are saying on our website forums too. Getting some outside support can be vital even if you have family around. Our helpline staff will always be happy to talk about anything that is worrying Chemotherapy for lymphoma
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you. They might also be able to put you in touch with someone who has had similar experiences to your own. It won’t be at all surprising if you feel low or depressed at some stage during your treatment. If you do, don’t put a brave face on it or bottle it up, talk to someone instead – your hospital team, your GP, a friend or relative, or one of our helpline team.
Looking after yourself Your physical and mental reserves will be challenged by having lymphoma and treatment with chemotherapy. One of the most important things is not to expect too much of yourself at this time. Let other people take care of you: accept offers of help and don’t be afraid to ask people – they will probably be only too happy to help. Some people find it helps to keep a diary during their treatment. This can help you to see the progress you’re making, even if slowly, towards your goal. Being realistic about those goals is also important – you need to take things in small steps. If you’re somebody who finds goal-setting just adds to your stress then it is equally fine to just take each day as it comes. You should do whatever works best for you, but bear in mind everybody has good and bad days on chemotherapy.
Some common questions Can I carry on working? Some people are able to carry on with their work during chemotherapy and may find it a helpful distraction. For many people this isn’t an option because they have a high risk of infection or a physically demanding job. Try not to push yourself too hard, let your energy levels guide you as to what you can do. If you do go to work, make sure your colleagues understand that you may feel tired at times and that you need to avoid infections. Ask for advice if not being able to work is causing financial problems.
Can I see friends and family? It is good to keep up your social life with family and friends during treatment whenever you feel well enough. But be realistic: don’t let people put you under pressure to do more than you want; allow yourself to rest before and afterwards. If you have a particular event that you want to attend, such as a family wedding, talk to your doctors. It may be possible to time your treatment so that you are at your best for the big day.
Can I have sex? There is no reason why you should not have sex during treatment if you feel like it, but you should use contraceptives. This is because treatments may damage sperm or eggs and could be harmful to a developing baby. Condoms should be used for 5 days following each treatment and you should also avoid oral sex during this time as there can be traces of chemotherapy in body fluids. (Note that oral contraceptive tablets may be less effective while you are on treatment, so do discuss this with your doctor or nurse.)
When can I get pregnant after my treatment? Although chemotherapy may make you less fertile, it is not a good idea to start a pregnancy while on chemotherapy or soon afterwards. Doctors generally advise that Chemotherapy for lymphoma
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women with lymphoma do not become pregnant during their treatment and for some time afterwards (many doctors recommend 2 years). Men with lymphoma should usually avoid making their partner pregnant while they are receiving chemotherapy and for at least 3 months afterwards. However, everybody's circumstances will be different, so it is important to discuss such issues with your hospital team. This will allow them to give specific advice on what they feel would be best for you.
A final note There are lots of things you may be able to do to help yourself while you are having chemotherapy. Most importantly, remember to think about yourself, ask for help and don’t expect too much of yourself. Some days are better than others – enjoy them when they come along.
Acknowledgement We are grateful to Professor David Cunningham, Dr Eliza Hawkes and Lucy Whiteman for their assistance in reviewing this article. Professor Cunningham is consultant medical oncologist, Dr Hawkes is clinical research fellow and Lucy Whiteman is haematology specialist nurse at The Royal Marsden NHS Trust.
Useful sources of further information about chemotherapy Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ 0808 808 00 00 (Monday–Friday, 9am–8pm) Order line for booklets 0800 500 800 via website www.macmillan.org.uk CancerHelp UK The patient information section of Cancer Research UK 0808 800 4040 (Monday–Friday, 9am–5pm) via website www.cancerresearchuk.org Leukaemia & Lymphoma Research 39-40 Eagle Street London WC1R 4TH 020 7405 0101
[email protected] www.leukaemialymphomaresearch.org.uk NHS Choices www.nhs.uk/conditions/chemotherapy/pages/definition.aspx
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References Skeel RT, Khleif SN (eds). Handbook of Cancer Chemotherapy. 8th edition. 2011. Lippincott Williams & Wilkins, Philadelphia. Perry MC. The Chemotherapy Source Book. 4th edition. 2008. Lippincott Williams & Wilkins, Philadelphia. Grevelman EG, Breed WPM. Prevention of chemotherapy-induced hair loss by scalp cooling. Annals of Oncology, 2005. 16: 352–358.
Chemotherapy regimens commonly used for lymphoma Regimen
Drugs included Generic name
Brand name
ABVD
Doxorubicin Bleomycin Vinblastine Dacarbazine
Adriamycin®
CHOP
Cyclophosphamide Doxorubicin (or hydroxydaunorubicin) Vincristine Prednisolone
CODOX-M
Cyclophosphamide Vincristine Doxorubicin Methotrexate
Oncovin®
CVP
Cyclophosphamide Vincristine Prednisolone
ESHAP
Etoposide Methylprednisolone High-dose cytarabine (Ara-C) Cisplatin
ICE
Ifosfamide Carboplatin Etoposide
IVAC
Ifosfamide Etoposide (VP-16) Cytarabine (Ara-C)
Oncovin®
Solu-Medrone® Platinol®
With the exception of ABVD, all of these regimens may be given with rituximab (MabThera®). In this case an R is placed before the name, eg R-CHOP. Chemotherapy for lymphoma
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How we can help you We provide: ●
a free helpline providing information and emotional support 0808 808 5555 (9am–6pm Mondays–Thursdays; 9am–5pm Fridays) or
[email protected]
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free information sheets and booklets about lymphoma
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a website with forums – www.lymphomas.org.uk
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the opportunity to be put in touch with others affected by lymphoma through our buddy scheme a nationwide network of lymphoma support groups.
How you can help us We continually strive to improve our information resources for people affected by lymphoma and we would be interested in any feedback you might have on this article. Please visit www.lymphomas.org.uk/feedback or email
[email protected] if you have any comments. Alternatively please phone our helpline on 0808 808 5555.
We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites which we link to. Please see our website (www.lymphomas.org.uk) for more information about how we produce our information. © Lymphoma Association PO Box 386, Aylesbury, Bucks, HP20 2GA Registered charity no. 1068395 Produced 31.10.2012 Next revision due 31.10.2014
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