Your lymphoma questions answered what is neutropenia?

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1 Produced November 2010 Next revision due November 2012 Your lymphoma questions answered what is neutropenia? Neutropenia means a lack of, or a low number of neutrophils. Neutrophils are cells that we all have in our bloodstream. They help us to fight off infections. In this article we will explain: what neutrophils are and what they do why the number of neutrophils falls when you have lymphoma why you are particularly at risk of infection when you have lymphoma what to look out for the symptoms and signs of infection what to do if you think you might have an infection what the medical team will be doing to cut down your risk of getting an infection what you can do to safeguard yourself against developing an infection. Does neutropenia matter? Yes, it definitely matters. The problem with having too few neutrophils is that you will be more prone to develop infections, which can sometimes be serious. People vary in how much they want to know about their lymphoma and their treatment, but neutropenia is something that everybody with lymphoma needs to be aware of. What are neutrophils? Circulating in your blood are several different types of white blood cells neutrophils, monocytes, eosinophils, basophils, lymphocytes and monocytes (Figure 1). These are made in the spongy bone marrow that fills the central cavity of some of your bones. These cells are very important in inflammation and in the control of infection. Neutrophils contain granules with chemicals in them that destroy bacteria. When a lot of bacteria have found their way into the body (an infection) many neutrophils will be needed and the leftover debris from the neutrophils attack on the bacteria becomes pus. The surrounding area might be red and inflamed-looking and this is a sign that neutrophils have been at work on an infection. 1

2 Figure 1: Blood cells Platelets BLOOD CELLS Red cells White cells Neutrophils Lymphocytes Monocytes Eosinophils and basophils (these are like neutrophils) Why do the numbers of neutrophils fall when you have lymphoma? Neutropenia can happen in people with lymphoma for two main reasons. Firstly, the lymphoma might be present in the bone marrow, meaning that there is not enough room left for normal blood cell production. Secondly, if you have chemotherapy treatment, cells are killed. The main aim of lymphoma treatment is to damage and kill off lymphoma cells. Unfortunately, an unavoidable side effect of many of these treatments is that healthy cells are also destroyed, especially cells that are dividing rapidly and replacing themselves, such as blood cells. Neutrophils can be damaged by chemotherapy in this way. Mature neutrophils only last about 4 days in the circulation and so they are rather sensitive to chemotherapy. How severe the neutropenia is and how long it lasts depends on the strength of the chemotherapy regime that you are having. Radiotherapy is usually only aimed at one area of the body and so will not affect too much of the bone marrow. It would therefore be unusual for radiotherapy alone to cause severe neutropenia, though it certainly doesn t help in some cases. 2

3 Why are you more prone to develop infections if you have lymphoma? There are two main factors that reduce your immunity and therefore increase your risk of getting an infection if you have lymphoma: As we have described above, chemotherapy causes a fall in the number of neutrophils circulating in your bloodstream. The lymphoma itself can make you more prone to infections. How many neutrophils do you need to fight off infections? The body has a lot of reserve capacity and you have many more blood cells than you really need for normal life. The normal neutrophil count in a blood sample is 2,500 6,000 neutrophils per millilitre of blood and this is more than enough to fight off infections. (Laboratories usually express this normal range as neutrophils/litre, as in Figure 2.) Figure 2: Risk levels in neutropenia Neutrophils x10 9 /litre 2.0 Normal Low but not much infection risk 1.0 Low with mild increase in infection Very low infections common Extremely low infections likely The risk of infection rises as the neutrophil count falls: slightly lowered neutrophil count ( /litre) minimal risk of infection low neutrophil count ( /litre) moderate risk of infection very low neutrophil count ( /litre) infections common extremely low neutrophil count (less than /litre) infections likely. 3

4 Why does the lymphoma itself make you more prone to infection? Unlike most patients who have chemotherapy, people with lymphoma have an additional problem with their immunity because the cells that have gone wrong are part of their immune system. You might have low antibody levels or lymphocytes that don t work very well, making you prone to infection before you even start chemotherapy. Other things that increase the infection risk If you need your spleen removed, this can also increase your risk of infection, although there are things that can be done to protect you against this. For more information on this you could call the helpline to ask for a copy of our article on splenectomy and the risk of infection. In addition, if you have a port or catheter in place for giving chemotherapy drugs this can be prone to get infected. Lastly, if you are malnourished because you are having difficulty eating, your body can find infections more difficult to fend off. So If you have lymphoma, you are prone to infection. If you are on treatment, you are very prone to infection. What are the symptoms and signs of infection? Infections can develop in any part of the body. No matter where it occurs, infection can be serious and it is important to watch out for symptoms and signs such as: fever make sure you always have a thermometer handy so that you can take your temperature accurately. If your temperature is 38 C or above you should always seek medical help. Some hospitals ask you to report temperatures even a little lower than this. (It is also important to report shivering episodes, even if your temperature is not raised) chills and sweating cough/phlegm, sore throat or mouth, earache redness, swelling or seepage around skin sores, injuries or any point of entry into the body (such as ports or intravenous lines that have been inserted for your treatment) loose stools/diarrhoea burning sensation when passing urine unusual vaginal discharge or itching unusual stiffness of the neck, difficulty with bright lights 4

5 mental confusion or any changes in behaviour that are out of character. It is important that you get in touch with your hospital team immediately if you have a fever, if you have any other of these signs of infection (no matter how mild they seem), or even if you just feel generally unwell or off-colour. What is neutropenic sepsis? You might have heard the phrase neutropenic sepsis used or seen it written down in leaflets the hospital gives you. This is a condition that your medical team is particularly looking out for because it can be very serious and needs to be treated urgently. Sepsis is a whole-body reaction triggered by an infection. It is an inflammation response to an infection. If you develop sepsis and you are also neutropenic this is known as neutropenic sepsis. Your medical team will diagnose sepsis if you are showing at least two out of these three features: a temperature of 38 C or higher (or sometimes also a very low temperature) a heart rate (or pulse) of over 90 beats per minute a breathing rate of over 20 breaths per minute. A word of warning about steroids Many chemotherapy regimes for lymphoma include steroids. These can damp down fevers and so can mask (hide) an infection. You should seek help if you might be neutropenic and feel unwell, whatever your temperature is. Even if the temperature is unimpressive you could still be unwell because of infection and in as much danger. (If you would like a copy of our article on steroids please call the helpline.) I think I might have an infection what should I do? The keys to avoiding serious problems arising from neutropenia are communication and prompt action. You should be provided with contact phone numbers covering every day of the week and any hour of the day. Many chemotherapy units provide cards with information about the regime you are on, as well as information and leaflets to show your GP or district nurse if needed. These will cover various symptoms but should include advice on what to do about neutropenic sepsis (sometimes called febrile neutropenia ) in other words, what to do if you become feverish or ill at a time when your neutrophil count could be low. 5

6 It is vital that you report any symptoms or signs of infection to your medical team straightaway. Essentially, if you develop any of the symptoms listed above or feel feverish or unwell during the time when you are at risk of neutropenia (remembering that the neutrophils can still be low for up to 10 days after the end of your chemotherapy) it is vital that you contact the hospital for advice. You should not stop trying to make contact until you have had relevant advice which could include attending the hospital (and, if so, you must go). Do not allow the situation to deteriorate at home. If your immunity really is at rock bottom, infection can take hold quickly and severely. It is always best to have treatment as early as possible. Figure 3 summarises the actions you need to take, depending on how you feel and on whether or not you are taking steroids. Figure 3: Action in neutropenia Feel well Feverish or unwell/fever Feeling generally unwell without fever (and on steroids) Remain vigilant SEEK HELP If you do develop an infection it is likely that you will be treated with antibiotics. In some cases you will have to be treated in hospital. If the infection is severe enough you will need to have your antibiotics through an intravenous drip. Things your medical team will be doing to cut down your risk of infection It is vital that you seek help if you think you might be developing an infection during the time that your neutrophil count is likely to be low. Your medical team will, however, try to help you avoid getting an infection in the first place. Before each chemotherapy cycle your doctor will arrange blood tests to check that the number of neutrophils in your blood is not too low (see Figure 2) and therefore that your risk of infection is not considered to be too high. If you are considered to be at high risk your doctor might delay the next course of chemotherapy until your count has recovered. 6

7 If you are neutropenic your doctor might prescribe a growth factor drug. These drugs, which are given by injection just below the skin, stimulate the bone marrow to produce more white blood cells. This helps the neutrophil count recover more quickly after chemotherapy, making you more resistant to infections. Sometimes a growth factor drug is given alongside antibiotics if an infection has already developed. (If you would like further information on growth factors please ask the helpline for a copy of our article on growth factors.) Things you can do yourself to cut down the risk of infection Before considering some general advice and then a few more specific tips on how to cut down your risk of getting an infection, it is important to keep in mind that your neutrophil count will still be low for up to 10 days after the end of each chemotherapy session. It is important, therefore, to try to follow these guidelines and remain vigilant for any signs of infection for all of this time. General principles for avoiding infection The following principles hold good not only during your chemotherapy but also during the 7 10 days afterwards: Stay away from people with infections such as colds, flu, diarrhoea and vomiting or chickenpox. Stay away from crowds in places such as cinemas and busy shops and on public transport (especially in the rush hour). Don t go into public swimming pools or jacuzzis. Don t overdo things, even if you are beginning to feel better. Self-care tips for avoiding infection during and after your chemotherapy Wash your hands often (but with moisturising soap, or moisturise afterwards). Clean your bottom gently but thoroughly after each bowel movement, wiping from front to back. Take a warm bath or shower every day and gently pat your skin dry rather than rubbing it. Use antiseptic mouthwashes, but avoid any that contain alcohol, which can irritate the mouth. Have any dental problems taken care of before you begin chemotherapy. Use a soft toothbrush that will not hurt your gums. Inform your medical team prior to having any dental treatment. 7

8 Take extra care to protect your skin: use lotion or oil if the skin becomes dry and cracked; use an electric shaver instead of a razor. Avoid situations where you could bruise or break your skin: always wear shoes; try to prevent cuts or tears of the cuticles of your nails; and be careful to avoid nicks and cuts when using sharp instruments. Avoid squeezing spots or scratching scabs use warm water and soap and an antiseptic to clean cuts and grazes. Make sure that all foods are properly handled, washed and thoroughly cooked. Wear protective gloves when gardening or cleaning up after pets. Don t have vaccinations unless they have been approved by your consultant. Don t take aspirin, paracetamol or any other medicine to reduce fever without your consultant s knowledge or approval. We have other information sheets that you might find helpful on how to look after yourself during chemotherapy and on safe eating in neutropenia. Please ask the helpline if you would like a copy of one or both of these. Acknowledgements This article was based on an earlier article written by Dr Paul Revell, consultant haematologist at Stafford General Hospital and by Jane Gibson, clinical nurse specialist at The Christie in Manchester. We are grateful to Dr Revell for reviewing this latest revision. About our publications: The Lymphoma Association is committed to the provision of high quality information for people with lymphoma, their families and friends. We produce our information in accordance with nationally recognised guidelines. These include the DISCERN tool for information about treatments, the NHS Toolkit for producing patient information, and the Campaign for Plain English guidelines. Our publications are written by experienced medical writers, in close collaboration with medical advisers with expertise in the appropriate field. Textbooks and professional journals are consulted to ensure that information is as up to date as possible. References are provided where they have been used. Some publications are written by professionals themselves, acting on guidance provided by the Lymphoma Association. Our publications are reviewed every two years and updated as necessary. Our publications are reviewed by a panel of volunteers with experience of lymphoma. Publications are also reviewed by members of the Lymphoma Association helpline team, who have many years collective experience of supporting those with lymphoma. In some instances, our publications are funded by educational grants from pharmaceutical companies. These sponsors do not have any involvement in the content of a publication. They are not invited to see the content and have no editorial input. Lymphoma Association Views expressed in this publication are those of the contributors. The Lymphoma Association does not necessarily agree with or endorse the comments included here. 8