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Peripheral neuropathy Peripheral neuropathy is damage to the nerves of your peripheral nervous system (network of nerves outside of the brain and spinal cord). Peripheral neuropathy can be a side effect of treatment for lymphoma. Occasionally, it occurs as a symptom of the lymphoma itself. What is peripheral neuropathy? (page 1) What are the symptoms of peripheral neuropathy? (page 2) Why do people with lymphoma get peripheral neuropathy? (page 3) How is peripheral neuropathy diagnosed? (page 4) How is peripheral neuropathy treated? (page 5) Can I prevent developing peripheral neuropathy? (page 6) What can I do if I have peripheral neuropathy? (page 6)

What is peripheral neuropathy? The nervous system works a bit like a network of electrical wires. The receptors and nerves within it pick up and carry signals and messages between different parts of your body. Peripheral neuropathy is damage to the nerves of the peripheral nervous system. It causes too much or too little nerve activity and disrupts communication between the nerves. The peripheral nervous system is made up of the: sensory nervous system, which carries information about the sensations felt by your skin and joints (eg heat, pain and touch), through the spinal cord and to the brain autonomic nervous system, which carries messages to and from your internal organs (eg about blood pressure, heart rate and the need to urinate) motor nervous system, which carries messages from the brain, down the spinal cord and to the muscles to make them move.

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What are the symptoms of peripheral neuropathy? Symptoms of peripheral neuropathy depend on which nerves are affected: sensory, autonomic or motor. Sensory nerves are most commonly affected.

Symptoms of sensory neuropathy Peripheral neuropathy that affects the sensory nervous system is known as ‘sensory’ neuropathy. The most common symptoms of sensory neuropathy are: pins and needles, numbness or a burning sensation pain increased sensitivity to touch heightened or lowered sensitivity to very hot or very cold temperatures unexplained sensations (eg feeling as though you have something in your shoe) uncertainty as to the exact position of your joints when you aren’t looking at them. Tasks that need fine movements, like doing up buttons, tying shoelaces or opening jars, may be difficult. You might also have symptoms further up your arms or legs if the neuropathy worsens.

Autonomic neuropathy Peripheral neuropathy that affects the autonomic nervous system is known as ‘autonomic’ neuropathy. The most common symptoms of autonomic neuropathy are: light-headedness or dizziness upon standing constipation abdominal (tummy) bloating feeling unable to wait to pass urine impotence in men. These symptoms may affect your daily life and your relationships. Your doctor can recommend treatment and advise you accordingly.

Motor neuropathy Peripheral neuropathy that affects the motor nervous system is known as ‘motor’ neuropathy. The most common symptoms of motor neuropathy are: muscle twitches, cramps or pains muscle weakness ‘restless legs’ (an urge to move your legs). You may find tasks like writing, carrying bags and climbing stairs difficult if you have weak muscles.

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Why do people with lymphoma get peripheral neuropathy? You might have peripheral neuropathy as a: side effect of treatment, eg chemotherapy symptom of the lymphoma itself sign of another condition or illness.

Side effects of treatments for lymphoma Some treatments for lymphoma can cause nerve damage. This is the most common reason for peripheral neuropathy in people with lymphoma. Whether you develop peripheral neuropathy depends on which drugs you are treated with and the dosage you have. If peripheral neuropathy is a likely side effect of the drugs recommended for you, your doctor should discuss this with you before you begin treatment. The drugs most likely to cause peripheral neuropathy are: vinca alkaloids (a group of chemotherapy drugs) including Vincristine (Oncovin®) and vinblastine (included in the ABVD chemotherapy regimen) platinum-based drugs, including cisplatin, oxaliplatin and carboplatin other drugs such as bortezomib (Velcade®), thalidomide and brentixumab vedotin (Adcetris®). Chemotherapy-induced peripheral neuropathy (CIPN) tends to affect sensory nerves more often than motor nerves or autonomic nerves. You might have only mild symptoms such as tingling in your hands and feet. Severe symptoms are less common. When symptoms start depends on the type of chemotherapy you have; however, symptoms often occur after a few cycles of chemotherapy. Occasionally, symptoms may get worse or even start only once your treatment has finished.

The lymphoma The lymphoma itself can cause peripheral neuropathy. This may happen: if paraproteins (chemicals produced by some lymphomas), stick to nerves and damage them. This is fairly common, particularly in people with Waldenström’s macroglobulinaemia (WM), half of whom are affected by peripheral neuropathy, or (rarely) if lymphoma cells grow into nerves or around the tiny blood vessels that supply the nerves.

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Another condition or illness You might already have another condition that can cause peripheral neuropathy, eg diabetes or low vitamin B12 levels. Long-term excessive drinking of alcohol can also cause nerve damage. Having lymphoma in addition to another condition that can cause nerve damage increases your risk of developing peripheral neuropathy. Your medical team consider this when they plan your treatment.

How is peripheral neuropathy diagnosed? Your symptoms are a significant factor in diagnosing peripheral neuropathy. Typically, neuropathy is diagnosed by asking questions and by doing a physical examination. You might be referred to a pain specialist to help with your symptoms. You might also be referred to a neurologist (who specialises in disorders of the nervous system) to check for nerve damage. Your neurologist may do a nerve conduction test and an electromyography (EMG) test. Usually, these tests are done at the same time.

Nerve conduction test A nerve conduction test involves having electrodes (small devices that carry tiny electrical impulses) attached to your skin. Your neurologist checks how quickly and how effectively your nerves carry the electrical impulses. Very slow or weak signals could be a sign of peripheral neuropathy. However, nerve conduction studies are of limited use for some symptoms of peripheral neuropathy, eg pain.

Electromyography (EMG) test An EMG test involves having a small needle put into a muscle. The needle measures the responses of the muscle to the electrical signals. If there is little or no response, it could be a sign of peripheral neuropathy.

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Note: You must tell the DVLA if you are diagnosed with peripheral neuropathy. For guidance on informing the DVLA, visit the Direct.Gov website at www.gov.uk/peripheral-neuropathy-and-driving or call on 0300 790 6806.

How is peripheral neuropathy treated? Tell your medical team as soon as possible if you have symptoms of peripheral neuropathy. Once it has developed, it can be difficult to treat. The best course of action is to prevent further nerve damage. Symptoms usually start to go away once you finish treatment for lymphoma. It may, however, be weeks or even months before you notice any improvement. With Waldenströms macrogolublinaemia, neuropathy often starts to improve when the lymphoma starts being treated. Occasionally, with chemotherapy-induced peripheran neuropathy symptoms worsen after finishing chemotherapy. We have more information about Waldenström’s macrogolublinaemia, which you can read on our website at www.lymphomas.org.uk. You can also print this information at home or, if you prefer, our helpline can send you copies. Please email at [email protected] or call on 0808 808 5555. If your treatment causes or worsens peripheral neuropathy, your medical team might reduce the dose or switch you to a different treatment. Nerve damage can often recover if the drug causing it is stopped or reduced. If pain is a symptom of your peripheral neuropathy, you might be given:

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a drug such as amitriptyline, duloxetine (Cymbalta®, Yentreve®), carbamazepine (Tegretol®), pregablin (Lyrica®) and gabapentin (Neurontin®) capsaicin cream (a pain relief medicine that is applied directly to the skin) if your pain is confined to one area lidocaine (Versatis®) plasters (which contain local anaesthetic) if your pain is in only a localised area tramadol, a morphine-like pain relief medicine that may be used if other treatments are not effective. Occasionally other morphine-like medicines may be used. What works for one person may not work for another. You might need to try more than one form of pain relief before you find one that suits you. If your neuropathy gets worse very quickly, you might be treated with plasmapheresis (plasma exchange). Plasmapheresis removes paraproteins from the blood. It has been shown to be effective in the short-term for some people affected by peripheral neuropathy (although not if it’s induced by chemotherapy). Lasting effects of peripheral neuropathy are uncommon. If your neuropathy is severe, you might have pain, long-lasting numbness or tingling in your hands and feet, which may never go away completely. For most people, symptoms improve over time (months or years); however, some people are left with more persistent symptoms.

Can I prevent developing peripheral neuropathy? Talk to your medical team about reducing your risk of peripheral neuropathy. Tell a member of your team if: you already have any of the symptoms outlined on this page. They can take this into account when planning your treatment. If your lymphoma relapses (comes back) and you developed peripheral neuropathy during your first course of treatment, your doctors should consider this. Where possible, they will avoid giving you drugs that could cause or worsen peripheral neuropathy you might be lacking vitamins from your diet. Your doctor may prescribe supplements to reduce your risk of developing neuropathy you drink a lot of alcohol. To reduce the risk of nerve damage, you might be advised to avoid or lower your alcohol intake while you are having treatment for lymphoma you are diabetic. Control your blood sugar levels to reduce the risk of developing peripheral neuropathy.

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Researchers are trying to find ways of preventing nerve damage. One possibility is to give neuroprotective treatment (eg amifostine) together with chemotherapy (eg cisplatin). This approach is considered experimental. You could ask your medical team if neuroprotective treatment is suitable for you. Studies suggest that there is potential for some medicines to prevent peripheral neuropathy. However, the findings are inconclusive and such medicines are not recommended for routine use at the time of writing.

What can I do if I have peripheral neuropathy? Peripheral neuropathy can affect your day-to-day life in a variety of ways. It’s important to find ways to cope with symptoms and to stay safe.

Coping with symptoms Speak to your medical team for advice on coping with symptoms of peripheral neuropathy. You might want to ask them about some of these tips: Flex and stretch your fingers and toes for a few minutes 4 times each day. Gently massage your fingers and toes. Wear gloves and thick socks in cold weather. The cold can worsen symptoms and you may have lowered awareness of temperature, putting you at risk of frostbite. Avoid alcohol as it can affect nerve function. Ease constipation with a high-fibre diet and drinking plenty of fluids. Laxatives may be helpful. Some people who have pain as a symptom of peripheral neuropathy find acupuncture helpful. Acupuncture is a type of complementary therapy (used in addition to hospital treatment, not instead). The evidence to support the effectiveness of this technique, however, is not conclusive. If you are interested in this approach to managing pain, ask your medical team whether it is suitable for you. We have more information about managing changes in bowel habits as well as information about complementary therapies, which you can read on our website at www.lymphomas.org.uk. You can also print this information at home or, if you prefer, our helpline can send you copies. Please email at [email protected] or call on 0808 808 5555. If your neuropathy is severe and you have muscle weakness, pain or balance problems, you might find day-to-day tasks difficult. Speak to your doctor if this is the case. They may be able to refer you to another health professional such as: a physiotherapist who can give you exercises to improve your symptoms. They may also organise daily living aids to make tasks easier, such as walking sticks, splints and supports an occupational therapist who can advise you on adaptations to help you around your home.

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Staying safe Nerve damage may mean that you don’t receive all the signals (eg touch, pain, temperature) you otherwise would. Without these signals, you may not realise you’ve hurt yourself. It’s important, therefore, to take steps to avoid such harm. Prevent injury: Wear gloves for gardening and washing up to prevent cuts and scratches. Protect your feet by wearing well-fitting, flat or low-heeled shoes. Seek advice from a pharmacist or your GP if you notice redness or signs of rubbing. Keep rooms, stairs and passageways well-lit and clutter-free to avoid tripping over. Avoid burning or scalding: Use oven gloves to prevent burns. Check the temperature of baths and showers before you get in. Use a thermometer to do this or have someone else check it for you. Remember: You must tell the DVLA if you have peripheral neuropathy.

Emotional impact of peripheral neuropathy Peripheral neuropathy may not affect you very much or for very long. For some people, however, it can be severe and long-lasting. This can impact your mood – you might feel low, anxious and frustrated. Ask your medical team for advice if you find your symptoms difficult to cope with. You might find it helpful to speak to other people affected by peripheral neuropathy on our online forums at www.lymphomas.org.uk/forum. Peripheral neuropathy is one of the side effects of treatment that Pat talks about in her personal experience of living with follicular lymphoma, which you can read in How we can support you section of our website at www.lymphomas.org.uk.

Useful organisations The Neuropathy Trust provides information and supports people affected by peripheral neuropathy and neuropathic pain. PO Box 26 Nantwich Cheshire CW5 5FP 01270 611 828 www.neurocentre.com email: [email protected]

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The Foundation for Peripheral Neuropathy is an American organisation. Their website gives more information about peripheral neuropathy, including a section on healthy living with the condition. www.foundationforpn.org email: via website British Red Cross has a medical equipment lending service – get in touch with your local office. 0344 871 1111 ?www.redcross.org.uk email: [email protected] Disabled Living Foundation provides information and advice on equipment that increases independence in activities of daily living. Helpline: 0300 999 0004 (10am–4pm, Monday to Friday) www.dlf.org.uk [email protected]

Sources used These are a few of the sources we used to prepare this information. The full list of sources is available on request. Please contact us by email at [email protected] or phone on 01296 619409 if you would like a copy. Maloney KW. Nursing management of chemotherapy-induced peripheral neuropathy (CIPN). OncoLink, 2012. Available at: www.bit.do/onkolink (Accessed March 2016). White CM, et al. Exercise for people with peripheral neuropathy. Cochrane Library, 2004. Available at: www.bit.do/exercise-peripheral-neuropathy (Accessed March 2016). National Cancer Institute, 2010. Chemotherapy-Induced Peripheral Neuropathy. Available at: www.bit.do/CIPN (Accessed March 2016). National Institute of Health and Care Excellence, 2013. Neuropathic pain in adults: pharmacological management in non-specialist settings. Available at: www.bit.do/NICE-recommendations (Accessed March 2016).

Acknowledgements With thanks to Dr Paul Farquhar-Smith, Consultant in Pain Management and Anaesthetics at The Royal Marsden NHS Foundation Trust, for reviewing this information. We would also like to thank the members of our Reader Panel who gave their time to review this information.

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Content last reviewed: April 2016 Next planned review: April 2019 LYMweb0062PeriphNeur2016v2

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Disclaimer We make every effort to make sure 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 we link to. The following user-generated information is excluded from the scope of our Information Standard certification: weblogs, chatroom, forums and personal experience pages. Neither The Information Standard scheme operator nor the scheme owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in the information published on the website on behalf of the Lymphoma Association.

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