Late effects of lymphoma treatment

Freephone helpline 0808 808 5555 information@lymphomas.org.uk www.lymphomas.org.uk Late effects of lymphoma treatment Many people with lymphoma will now live for many years after they have had treatment. Most people will be healthy and have few ill effects once they have recovered from their treatment. A few people though will have health problems that affect them after their treatment has finished. These are often known as late effects of treatment. This leaflet aims to answer some of the questions you may have about the late effects of lymphoma treatment: What is meant by late effects of treatment? (see below) Am I at risk of late effects? (see below) Which side effects can become long-term problems? (page 2) What late effects can develop some time after treatment? (page 5) What can I do about possible late effects? (page 9) We can provide further information about life after treatment, including looking after yourself, your close relationships and the emotional impact of having lymphoma. Please ring our helpline (0808 808 5555). What is meant by late effects of treatment? Late effects of treatment are health problems that can affect you months or even years after you have had treatment. They may be long-term side effects of your treatment. These are side effects you had during your treatment that have not gone away some time later. Other late effects are problems that only develop some months or even years after you have finished treatment. You may hear people refer to these problems as having a delayed onset. Am I at risk of late effects? Your risk of late effects depends on a number of different things including: Your treatment. For chemotherapy, it depends on the type(s) of drug and the dose used. For radiotherapy, it depends on what part of your body is treated and the dose of X-rays given. Number of other treatments. More courses of treatment may add to the risk. Your age both now and when treated. Some late effects are more likely in those who were young when treated; others occur more often in those treated later in life. 1/12

Your general health and lifestyle. If you have other health problems, your risk of some late effects could be higher. Your lifestyle may also affect your risk; for example, smoking will put you more at risk of several late effects. Your family history. You are more likely to develop certain problems if other members of your close family have had these illnesses. This might add to your risk of some late effects. Chance. You may be at risk, but that doesn t mean you will have problems. Many people who are at risk have no late effects from their lymphoma treatment. Before your treatment begins, you should have the chance to discuss the side effects of treatment. You should be made aware of possible long-term and late side effects. That said, your specialist s main concern will be to treat your lymphoma successfully. Modern treatments are designed to do this with the least possible risk to your long-term health. Your future health will also be discussed with you at follow-up appointments after your treatment has finished. It is important to know what your risks are, but remember no one can predict exactly what will happen to you in the future. Which side effects can become long-term problems? Some side effects that start during your treatment are less likely than others to go away quickly after treatment. Some of these can become long-term problems; a few may even be permanent. The following are some of the more common long-term effects. Reduced fertility Certain types of chemotherapy can reduce your fertility, meaning it is less likely you will be able to have children. Higher doses of chemotherapy, such as those used in stem cell transplants, make fertility problems more likely. Radiotherapy to the pelvis can also harm fertility. This is mainly a problem if your ovaries or testes are within the area treated. Many people are able to have children after treatment without any problem. Do talk about any concerns you have with your hospital team because everybody s circumstances are different. This will allow them to give you specific advice on what they feel would be best for you. Reduced fertility in men If your treatment could affect your fertility, your specialist will talk about sperm storage with you before you start treatment. This is a well-proven treatment because sperm can be kept frozen for many years. The sperm will be used in the future if you want children but your partner is unable to become pregnant naturally. Most specialists advise that men with lymphoma avoid making their partner pregnant while on chemotherapy and for at least 3 months afterwards. This is because treatments may damage your sperm and could be harmful to a developing baby. 2/12

Reduced fertility in women As a woman, the older you are when treated, the more risk you have of reduced fertility. You may find that your periods stop or become irregular when you are having chemotherapy. You might also develop symptoms of the menopause. For some women, their periods do not return or stay irregular after their treatment has finished. Women closer to the age of normal menopause are more likely to have an early menopause after treatment. The choices for women who might be affected by reduced fertility after treatment are more limited. If time allows, you should see a fertility specialist before treatment begins if future problems are likely and could be an issue for you. Embryo storage may be possible for some women who are fit enough to undergo the hormonal treatments needed for egg collection. Other options, such as freezing unfertilised eggs, may be available but are still experimental. Unfortunately, for many women there isn t enough time for such procedures before their lymphoma needs to be treated. If you have already been treated and are not able to get pregnant naturally, you should see a fertility specialist for further advice. We produce more detailed information on fertility and lymphoma, please ring the helpline if you would like a copy (0808 808 5555). Fatigue Fatigue, which is more than just normal tiredness, is one of the most common longterm problems after lymphoma treatment. For some people it improves with time, but for others it never seems to go away. Long-term fatigue is more common in people who have other health problems, including heart disease, anaemia and reduced thyroid function your doctor will be able to check for these. Other factors that can make fatigue worse include depression, anxiety, inactivity, pain and disturbed sleep. Your state of mind can play a huge part, so it is important you get support if needed. Do let people know if you are still having problems with fatigue long after your chemotherapy has ended. Talk to your doctor about your fatigue and what could be done to help. There may also be things you can try to help yourself: try to get more exercise studies show fatigue is much less common in people who exercise regularly after having lymphoma treatment eat well get plenty of rest when needed 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 save your energy for the things you want to do try to plan your activities in advance make time to see friends and take part in normal social activities. 3/12

Peripheral neuropathy Peripheral neuropathy is a common side effect of some chemotherapy drugs, in particular vincristine and vinblastine, and platinum-based drugs. Peripheral neuropathy affects the way you feel temperature, pain and even light pressure on your skin. You may notice pins and needles, tingling or numbness, typically in your hands and feet. It sometimes causes clumsiness or problems with balance. Neuropathy may also cause constipation. For most people these problems improve in the weeks after treatment; for a few people they continue and may become permanent. Diabetes can cause similar symptoms so might add to these problems.if you have peripheral neuropathy, it is important you avoid injury to your fingers and toes: wear gloves and sturdy footwear for gardening wear comfortable shoes and avoid high heels or shoes that are tight avoid extreme temperatures, for instance get someone to check your bathwater is not too hot or use a thermometer to do this; keep your feet and hands warm because cold may make your symptoms worse try gentle massage and exercise your fingers and toes by flexing and stretching them for a few minutes four times a day inspect your feet regularly to check for damaged skin in parts that are numb, particularly on the soles of your feet and around your toenails. Reduced salivary gland function Radiotherapy to the head and neck can damage the salivary glands, so less saliva is produced. This leads to a dry, sore mouth and problems with eating. The problem may continue long term or be permanent for some people. Smoking will make this problem worse. Your doctor or pharmacist might suggest a saliva substitute to help with the problem. Memory problems and confusion Some treatments for lymphoma, particularly when it is affecting the central nervous system (the brain and spinal cord), can affect the way your brain functions. People having treatment for lymphoma quite often find it harder than normal to concentrate and to think. They, or their relatives, may be aware of poor memory or confusion too. This is known as cancer-related cognitive disorder or sometimes as chemo brain. In fact, it may be due to the lymphoma itself, especially if it is affecting the brain, or to other treatments such as radiotherapy. For most people cancer-related cognitive disorder gets better in the months following their lymphoma treatment. Some people though may continue to have problems or even develop more problems after their treatment has finished. This is more likely in older people or very young children who have been treated with high doses of X-rays to the brain. 4/12

Increased risk of viral and other infections Antibody therapies, such as rituximab (MabThera ) and alemtuzumab (MabCampath ), along with some chemotherapy drugs, particularly fludarabine, can affect the immune system for many months after they are given. This means that though most of your white blood cells (neutrophils) have recovered, you still have a higher risk of some infections. After having treatment for lymphoma, you should see your doctor quickly if you develop any symptoms of infection. In particular, some viruses, which often stay dormant (inactive) in our bodies, can become active after lymphoma treatment and may cause problems. A common example is the herpes zoster virus, which causes shingles when it reactivates. The problems caused are often more severe in those who have a damaged immune system. Early treatment with an antiviral drug can help. Other problems can affect those who have had specific infections in the past, for example previous hepatitis infection. Sometimes people may not be aware that they have had an infection until it causes problems. You should always remind any doctor looking after you about the treatment you have had for lymphoma. If you would like to talk more about any of these side effects please ring our helpline on 0808 808 5555. What late effects can develop some time after treatment? The late effects of lymphoma treatment are health problems that can also affect people who have not had lymphoma or any form of treatment. In the past, as people began to survive longer after lymphoma treatments, doctors noticed that certain problems were more likely after treatment. However, there was often a long time between treatment and the problem appearing. Therefore, information on late effects often relates to treatments that were given 10 or 20 years ago. Because doctors have found out about these risks, modern lymphoma treatments are designed to limit the risks as much as possible. Clearly though the treatments must still be strong enough to treat the lymphoma successfully, so they cannot be totally without risk. Second cancers People who have had treatment for lymphoma are more likely to get certain cancers than people who have not had such treatment. Much of what is known about the higher risks of cancer comes from older studies in people with Hodgkin lymphoma. In these studies people were often treated with big doses of radiotherapy given to large areas of the body. Today smaller doses of X-rays are given and in a much more targeted way. There is evidence that this is safer but it won t be proved for certain until 10 or 20 years have passed. Many studies are also now trying to work out which people have a good chance of cure without having radiotherapy. Positron-emission tomography (PET) scanning is one test that may allow doctors to decide which people will benefit most from radiotherapy. 5/12

There are a number of other factors that can increase your risk of second cancers. These include: any other lymphoma treatment your lifestyle your general health your age your family history. Breast cancer Treatments for lymphoma can increase your risk of developing breast cancer later in life. The biggest risk factor for this is radiotherapy if the area treated included your breast tissue. The increase risk of breast cancer is higher in women who were younger at the time of treatment, particularly in those who were under 25. The risk of breast cancer begins to rise from approximately 10 years after the radiotherapy was given. If you are at risk from earlier radiotherapy, you should have regular breast cancer screening from 8 years after treatment onwards. This is now routine practice following guidance issued by the Department of Health. It is usually done by mammography but a magnetic resonance imaging (MRI) scan may be used if you are under 50. Lung cancer Radiotherapy to the chest can make people more at risk of lung cancer later in life. The increase risk depends on the dose of X-rays given to the lungs and how much of the lung is treated. Your chances of developing lung cancer are much higher if you smoke. The risk of lung cancer rises most about 10 20 years after your radiotherapy. It continues to be high for many more years. There is, at present, no lung cancer screening programme in the UK. This is because there is no safe, simple test that would pick up enough early cancers to be worthwhile. You should though be aware if your risk is higher and know the possible symptoms. See your doctor promptly if you have a cough that doesn t get better, cough up blood, feel more short of breath, or get pain in your chest. If you smoke, your risk will be much lower if you stop. Skin cancer Both radiotherapy and chemotherapy can increase the risk of skin cancer and other skin problems. Because harmful rays from the sun are known to damage the skin, you should take extra care in the sun after treatment. Your skin will be more sensitive so keep it covered or protected with a high SPF (sun protection factor) sunscreen. Skin cancers can develop many years after treatment. See your doctor promptly if you notice any changes in your skin most skin cancers are easily treated if found early. 6/12

Other cancers The risk of a number of other cancers may also be higher after treatment for lymphoma. The exact risks will depend on which area of your body has been treated with radiotherapy. Again it is important you are aware of your risks, know the possible symptoms and see your doctor promptly about any concerns. Chest and neck increase risk of cancer of the oesophagus (the tube leading from your mouth to your stomach); smoking will further increase your risk. Head and/or neck increase risk of head and neck cancers in later life, including cancers of the mouth, tongue, gums and thyroid gland. Abdomen increase risk of bowel cancer. Leukaemia and other blood disorders The risk of developing leukaemia is slightly higher from about 3 years after having chemotherapy for lymphoma onwards. It continues to be high until 10 years or more after treatment. Your risk is higher if you have had high doses of chemotherapy, as used in stem cell transplants. Another problem that is more common after chemotherapy, particularly when used in high doses, is myelodysplastic syndrome (MDS). MDS is a condition where the bone marrow no longer makes enough healthy blood cells. This can result in a low blood count, most often causing anaemia (a shortage of red blood cells) that may need to be treated with blood transfusions. A few people with MDS will go on to develop leukaemia. Heart disease and stroke Heart disease (sometimes known as cardiovascular disease) is more common in people who have been treated for lymphoma. Your risk of heart disease can be increased by certain chemotherapy drugs and by radiotherapy to an area including the heart. The chemotherapy drugs most likely to cause heart damage are called anthracyclines. These drugs are part of many regimens used for lymphoma including CHOP and ABVD. It is well known that they can cause weakness of the heart muscle but they are important to successful lymphoma treatment. You may have tests done before you start treatment to check that your heart is working well. Your doctors will be careful not to prescribe more than the safe dose throughout your treatment. Even so, some people can develop heart problems after their treatment. The risk of heart disease is also higher after radiotherapy given in the area of the heart. Radiotherapy to your chest and neck may also increase your risk of stroke in later life. This is because radiotherapy can add to any hardening of the arteries. This weakens the blood vessels and can cause problems with the blood supply to your heart muscle or brain. These problems become more common 10 years or more after your treatment. 7/12

How much your risk increases depends on the dose of radiotherapy given and the precise treatment area. Your risk of heart disease and stroke depends on many other factors too including: smoking high blood pressure diabetes family history obesity high blood cholesterol levels. Taking good care of yourself, maintaining a healthy weight and giving up smoking will help limit your risk of heart disease and stroke. You should also see your doctor for advice about monitoring your blood pressure, and checking for diabetes and high cholesterol. Lung fibrosis (scarring) Lung fibrosis is the medical term for damage to your lungs through scarring. It can be caused by radiotherapy to the chest and by some chemotherapy drugs, including bleomycin used in ABVD. Lung fibrosis, once it develops, is usually permanent. If mild it can be seen on X-rays or scans but will not cause you any symptoms. Some people may find it makes them short of breath and they will be able to do less exercise than before. If you have been treated with bleomycin and you need to have an operation in the future, you should tell the anaesthetist about it. Reduced thyroid function The thyroid gland is located in the lower part of the neck and makes a hormone called thyroxine. A lack of thyroxine in the blood is called hypothyroidism. Radiotherapy given to the neck can damage the thyroid gland and reduce the amount of thyroxine made. The risk of developing hypothyroidism is higher in the first 5 years after treatment, but continues for many more years. Thyroxine helps control your body s metabolism, making it work at the right pace. A lack of thyroxine will slow your metabolism making you feel tired a lot of the time. You might be more sensitive to cold and gain weight easily too. Hypothyroidism can be difficult to detect because the symptoms are often blamed on something else getting old, overdoing things, not exercising. If it happens a long time after your radiotherapy you might no longer be seeing your lymphoma consultant. It is important therefore that this problem is not forgotten if you are at risk. It can be diagnosed by a simple blood test in your GP surgery and is easily treated with thyroxine tablets. There is also an increased risk of developing thyroid cancer many years after radiotherapy to the neck. 8/12

Poor dental health Radiotherapy to the head and neck can lead to an increased risk of tooth decay. It is important that you have regular check-ups with your dentist after radiotherapy. You should tell your dentist that you have had radiotherapy to the head and neck, especially if you need any dental treatment. Eye problems People who have had radiotherapy to an area including the eyes may suffer with dry eyes. They are also at increased risk of developing cataracts in the future. The risk of developing cataracts is also higher for people treated with high doses of steroids used alongside chemotherapy to treat some lymphomas. In certain people, steroids can also bring on glaucoma a condition that often runs in families which can cause loss of vision. It is important that you visit your optician regularly because they will be able to check for early signs of these conditions. You should tell your optician about the lymphoma treatment you have had. What can I do about possible late effects? If you have been successfully treated for lymphoma, it may not be possible to prevent all health problems later in life. Finding problems earlier though can often make them easier to treat. These steps may help you take care of yourself: Find out what your risks are. Check exactly what your treatment involved and what your individual risks are. Find out what symptoms you should be aware of. Find out if there is anything you can do to protect your long-term health, such as having regular check-ups with your GP, dentist or optician. Attend your follow-up appointments. Monitoring and treatment of late effects are an important part of your follow-up after treatment you should make every effort to attend. Make a note of anything that concerns you between appointments. These appointments give you and your consultant the chance to identify problems and discuss what can be done about them. If you are worried and your appointment is a long way off, ask for an earlier appointment or talk to your GP. If you move house in the future, do remember to give your new address details to your hospital. Ask about late effects clinics. Some hospitals will have late effects clinics to monitor people at particular risk for a longer time such as those who have had a stem cell transplant. Get information before you are discharged. Some late effects may happen many years later, when you have been discharged from follow-up. If your doctor says you can be discharged, make sure you know your risks and exactly what treatment you had and when. It can also help to keep a note of what you should look out for. Some hospitals will give you a record of all this information once you have finished treatment. Get to know what is normal for you. Be aware of your body and how you usually feel. If you think something is not right, even if it s hard to put your finger on it, do see your doctor and remind them of the treatment you ve had. 9/12

Follow a healthy lifestyle. No one can know what will happen in the future, but a healthy lifestyle now gives you the best chance of a healthy future. Avoid adding to your health risks by: - eating a healthy diet - maintaining a healthy weight - taking regular exercise - giving up smoking. Preventing second cancers If your treatment has given you a higher risk of cancer in the future, there may still be things you can do to limit the risk. Making changes to your lifestyle could reduce your risks in the future: - stop smoking - eat a healthy diet including lots of fruit and vegetables - take regular exercise and maintain a healthy weight - don t drink more alcohol than the recommended safe limit - protect your skin from the sun. Cancers are usually more easily treated if found early. The following tips could make this more likely: - know what cancers you might be at risk of - find out about these cancers and what the symptoms are - find out when they are most likely to happen to you - report any symptom that worries you promptly. Screening programmes are specifically designed to find cancers early. -You will be advised to begin breast screening earlier if you have a higher risk of breast cancer. -Bowel cancer screening is now offered to people in their 60s and can be requested by people over 70. -Cervical screening is offered to women aged 25 64 years; it is important you attend when invited. - There is no screening programme for lung cancer at present. -Ask your consultant about cancer screening. Find out if you should be screened for some cancers in a different way or earlier than other people. 10/12

A final note We now know much more about the late effects of lymphoma treatment than was known in the past. The treatment of lymphoma has changed over the years based on what doctors know about late effects. Hopefully, if you are being treated today, you will be less at risk of future health problems than people treated in the past. If you are someone who was treated in the past, understanding your risks now allows you and your doctors to be on the lookout. Detecting problems early possibly as part of a formal screening programme means they are likely to be more easily dealt with. If you would like to talk more about living with lymphoma or the late effects of lymphoma treatment, please ring our helpline (0808 808 5555). Acknowledgement We would like to thank Professor Graham Jackson and Dr Gail Jones, consultant haematologists at Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, for their assistance in reviewing this article. Useful sources of further information about late effects of cancer treatment Cancer Research UK 0808 800 4040 (Monday Friday, 9am 5pm) via website www.cancerhelp.org.uk Leukaemia & Lymphoma Research 020 7504 2200 info@beatingbloodcancers.org.uk www.leukaemialymphomaresearch.org.uk NHS Cancer Screening Programmes www.cancerscreening.nhs.uk Selected references The full list of references is available on request. Please contact us via email (publications@lymphomas.org.uk) or telephone 01296 619409 if you would like a copy. van Dorp W, et al. Long-term endocrine side effects of childhood Hodgkin s lymphoma treatment: a review. Human Reproduction Update, 2012. 18: 12 28. Castellino SM, et al. Morbidity and mortality in long-term survivors of Hodgkin lymphoma: a report from the Childhood Cancer Survivor Study. Blood, 2011. 117: 1806 1816. Hodgson DC. Late effects in the era of modern therapy for Hodgkin lymphoma. Hematology: American Society of Hematology Education Program, 2011. 2011: 323 329. 11/12

Lanini S, et al. Risk of infection in patients with lymphoma receiving rituximab: systematic review and meta-analysis. BMC Medicine, 2011. 9: 36. Pirani M, et al. Risk for second malignancies in non-hodgkin s lymphoma survivors: a meta-analysis. Annals of Oncology, 2011. 22: 1845 1858. Thompson CA, et al. Care of the adult Hodgkin lymphoma survivor. American Journal of Medicine, 2011. 124: 1106 1112. Bellizzi KM, et al. Physical activity and quality of life in adult survivors of non- Hodgkin s lymphoma. Journal of Clinical Oncology, 2009. 27: 960 966. How we can help you We provide: a freephone helpline providing information and emotional support 0808 808 5555 (9am 5pm Monday-Friday) or information@lymphomas.org.uk information sheets and booklets about lymphoma (free of charge) a website with forums www.lymphomas.org.uk 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 publications@lymphomas.org.uk 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 Updated: May 2013 Next planned review: May 2016 12/12