Peripheral neuropathy – a guide for people with lymphoma

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Peripheral neuropathy – a guide
for people with lymphoma
Peripheral neuropathy means damage to nerves of the peripheral nervous system. The
peripheral nervous system consists of nerves that connect the central nervous system
(the brain and the spinal cord) with the rest of the body. These nerves control the
movements of our arms and legs and carry sensations from the body back to the brain.
Peripheral neuropathy is a side effect of some of the drugs that are used to treat
lymphoma. It can also occasionally occur as a symptom of the lymphoma itself. Most
commonly, people first notice 'pins and needles' or numbness in their fingers or
toes. For most people neuropathy will be a temporary problem, but it is important to
recognise the symptoms and report them to your medical team. They can then adjust
your treatment if necessary.
In this article we are aiming to answer questions you might have about peripheral
neuropathy:
• What is peripheral neuropathy? (see below)
• Why do people with lymphoma develop peripheral neuropathy? (page 2)
• How likely am I to get peripheral neuropathy? (page 3)
• What are the symptoms of peripheral neuropathy? (page 4)
• How is peripheral neuropathy diagnosed? (page 5)
• Will the neuropathy get better? (page 5)
• Is there any treatment for peripheral neuropathy? (page 5)
• Is there anything I can do myself? (page 6)
What is peripheral neuropathy?
The body’s nervous system is made up of several parts. The brain and the spinal cord
make up the ‘central nervous system’ or CNS. The CNS communicates with the rest
of the body through two types of nerves:
•the cranial nerves, which supply the head, heart and some abdominal organs; these
come directly from the brain
•the nerves that run between the CNS and the rest of the body – the peripheral
nervous system; these nerves detect sensations and control our muscles and they
start in the spinal cord.
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The peripheral nervous system can be divided into:
•
motor nerves that carry messages from the brain, down through the spinal cord to
muscles, making them move
•
sensory nerves that carry information about sensations felt by the skin and joints
back through the spinal cord to the brain – sensations of touch, pain, temperature,
vibration and awareness of the position of our joints
•
autonomic nerves that transmit messages to and from the body’s internal organs
– such as messages about blood pressure, heart rate, the need to pass water, the
movement of food through the gut and messages that control sexual function.
‘Neuropathy’ means damage to nerves. ‘Peripheral neuropathy’ means damage to the
nerves of the peripheral nervous system. Any of the three types of nerves might be
damaged if you have peripheral neuropathy.
Why do people with lymphoma get peripheral
neuropathy?
There are three main reasons why you might develop peripheral neuropathy if you have
lymphoma:
1. The lymphoma itself can cause peripheral neuropathy – this is an unusual cause.
2.Some drugs used to treat lymphoma can cause peripheral neuropathy as a side
effect – this is the most common cause.
3.You might have other conditions or illnesses that can also cause peripheral
neuropathy or you might be taking drugs for other conditions that cause
neuropathy as a side effect.
Neuropathy caused by the lymphoma itself
The lymphoma itself can cause peripheral neuropathy. This can happen when
lymphoma cells grow into nerves or around the tiny blood vessels that supply the
nerves – but this happens very rarely. Usually it happens because of chemicals
that some lymphomas produce. These chemicals are abnormal proteins called
paraproteins, which are antibodies that can stick onto nerves and damage them.
In one type of lymphoma called Waldenström’s macroglobulinaemia (the most common
type of lymphoplasmacytic lymphoma), peripheral neuropathy is particularly common.
This lymphoma produces a paraprotein called 'immunoglobulin M' or IgM. This abnormal
protein can attack nerve endings in the hands and feet. Up to half of people with
Waldenström’s macroglobulinaemia develop peripheral neuropathy.
Neuropathy caused by lymphoma treatments
Some of the drugs used to treat lymphoma can cause nerve damage, especially
certain chemotherapy drugs (see page 3). This is the most common reason for having
peripheral neuropathy if you have lymphoma. Whether this problem develops depends
on which drugs you are being treated with and on how much of them you receive
altogether.
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Other medical conditions that cause neuropathy
You might already have another condition that can cause peripheral neuropathy, such
as diabetes or low vitamin B12 levels. Alcoholism can cause peripheral neuropathy.
Drugs that you might be taking for something else can also cause peripheral neuropathy
as a side effect (though this is rare).
If you already have a condition that can cause nerve damage, you are at higher risk of
developing neuropathy or of it getting worse as a side effect of anti-lymphoma drugs.
These other conditions are therefore taken into account when your medical team
decides what dose of drug to give you.
How likely am I to get peripheral neuropathy?
Whether you develop neuropathy will depend on:
• which drugs you are being treated with (see below)
•whether you are being given more than one drug that can cause peripheral
neuropathy
• how much of the drug(s) you receive altogether
•whether or not you have any other condition (such as diabetes) or are taking any
other medication that can cause peripheral neuropathy
•your age – older people are more likely to develop this side effect than younger
people.
The chemotherapy drugs that most commonly cause neuropathy are the anti-cancer
drugs called ‘vinca alkaloids’. The vinca alkaloids include the drugs vincristine,
vinblastine and vindesine. Vincristine (Oncovin®) is the most likely of these to cause
peripheral neuropathy. Many combination chemotherapy treatments for lymphoma,
such as CHOP and CVP, contain vincristine. Vinblastine is part of ABVD, which is a
chemotherapy regimen that is often used to treat Hodgkin lymphoma.
Platinum-based drugs such as cisplatin, oxaliplatin and carboplatin can also cause
peripheral neuropathy. These drugs are most likely to be used to treat lymphoma that
has come back after treatment. Other anti-lymphoma drugs that can cause peripheral
neuropathy are bortezomib, thalidomide and brentuximab vedotin.
There are no exact figures available for how common peripheral neuropathy is in
people on chemotherapy drugs. It is quite common for people who are receiving
treatment with vincristine to experience some mild symptoms, such as tingling in
their fingers and toes. It is not common for chemotherapy to cause severe neuropathy
symptoms, however.
Research has suggested that older people seem to be more vulnerable to developing
peripheral neuropathy and many hospitals will decrease the dose of chemotherapy
drugs in older people if that is possible.
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What are the symptoms of peripheral neuropathy?
Peripheral neuropathy does not usually show up right at the start of treatment.
It usually comes on over a period of a few weeks, starting some weeks after the
treatment begins. It often gets worse shortly after each course of chemotherapy.
Neuropathy causes symptoms by leading to too much nerve activity or to loss of nerve
activity. The symptoms will depend on which nerves are affected. Chemotherapy drugs
tend to affect sensory nerves (the nerves of feeling) more commonly than motor nerves
(the nerves of movement).
Symptoms of sensory neuropathy
The most common changes in sensation that occur are:
• pins and needles
• burning sensations
• increased sensitivity to touch
• increased sensitivity to cold (with oxaliplatin treatment)
• unexplained sensations (eg feeling as if you have something in your shoe)
• pain, especially stabbing pains
•numbness
• decreased awareness of extremely hot or cold temperatures
•decreased awareness of exactly which position your joints are in when you aren’t
looking directly at them.
These symptoms are more common in the hands and feet than further up the body
but they can move upwards over time. They often start in the toes. If your fingers
are affected, the changes in sensation can mean that fiddly things such as doing up
buttons can become difficult. People often say that they feel clumsy or unsteady on
their feet. Neuropathy can also increase your risk of burning yourself when you are
cooking or bathing.
Symptoms of motor neuropathy
If the nerves to the muscles (the motor nerves) are affected, you can experience
muscle twitches or cramps and these can be painful. Some people describe having
‘restless legs’. Sometimes the muscles can become weak and it can become more
difficult to do things like writing, carrying shopping and climbing stairs.
Symptoms of autonomic neuropathy
If the nerves to the internal organs (the autonomic nerves) are affected, you can
experience light-headedness or dizziness when you get up after sitting or lying
down. Autonomic neuropathy can also cause constipation and abdominal bloating or
problems with passing water (such as not being able to wait). Men with neuropathy
can experience impotence.
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How is peripheral neuropathy diagnosed?
Your symptoms are the most important clue if you have developed a peripheral
neuropathy. It is important that you tell your medical team if you develop any of the
nerve symptoms we have described here while you are on treatment for lymphoma.
This is because the nerve damage can often be reversed if the drug is stopped or the
dose is cut down.
Your team will also be checking your nervous system when they examine you and they
will be able to tell if the nerves are being affected. Doctors will sometimes do special
nerve tests called ‘nerve conduction studies’ or muscle tests called 'electromyography'
(EMG) if a peripheral neuropathy is suspected.
Will the neuropathy get better?
It is not essential to stop the drug straightaway but if the neuropathy gets worse this
might be necessary. Most doctors will reduce the dose of vincristine as a first step,
for example, if this drug is causing symptoms. Alternatively, they might switch you to
another form of vinca alkaloid such as vinblastine or vindesine, which are less likely to
cause problems.
The symptoms usually stop getting worse and start to go away once the treatment
stops, but it can take many weeks or even several months before you notice much
improvement. Providing the nerve damage is not too severe, there are usually very few
long-term effects. Some people will have more long-lasting numbness or tingling in
their hands and feet, however. This might never go away completely.
If your lymphoma comes back and you developed peripheral neuropathy on your first
course of treatment, the doctors will take this into account when they plan what
treatment to give you next. They will be aiming to avoid giving you any drugs that would
cause neuropathy again or make your neuropathy worse.
Is there any treatment for peripheral neuropathy?
It is difficult to treat neuropathy once it has developed, but it usually improves by
itself with time. The best course of action is to prevent any further damage to the
nerves. This is why it is important to tell your medical team straightaway if you develop
symptoms. Don’t keep your symptoms to yourself for fear that your treatment will
have to be stopped. The doctors can reduce the amount of the drug you are having
or change it to another drug so that your recovery from the lymphoma won’t be
compromised.
If you develop pain as a symptom of peripheral neuropathy there are a number of
painkillers and other drugs that can help. Drugs that are also used to treat depression
or seizures have been found to be helpful. These include amitriptyline, duloxetine
(Cymbalta®, Yentreve®), carbamazepine (Tegretol®), pregabalin (Lyrica®) and gabapentin
(Neurontin®). You might need to try more than one treatment before finding the best
one for you.
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Treatments that can be applied directly onto the skin include lidocaine plasters (Versatis®)
and capsaicin cream.
There are several treatments that your doctor can prescribe if you are having problems
with symptoms of autonomic neuropathy, such as light-headedness, bladder or bowel
problems or sexual difficulties.
In people with Waldenström’s macroglobulinaemia the neuropathy often improves
when the lymphoma is treated. Some people whose neuropathy is getting worse very
rapidly might need to be treated with a procedure called 'plasmapheresis' (sometimes
called 'plasma exchange'). This is done to remove the IgM protein from the blood.
Intravenous immunoglobulin is occasionally used to treat the neuropathy of this
lymphoma.
We have separate information on Waldenström’s macroglobulinaemia. If you
would like this, ring our helpline (0808 808 5555) or download it from our website
(www.lympomas.org.uk).
Is there anything I can do myself?
There are one or two things you can do before you start your treatment for lymphoma
to cut down your risk of developing peripheral neuropathy. There are also some things
you can do to relieve symptoms and some precautions you should take to avoid injuring
yourself.
Cutting down the risk of developing peripheral neuropathy
If you are going to have chemotherapy it is important to tell your doctor if you already
have any of the symptoms described on page 4. If you already have symptoms or signs
of peripheral neuropathy your team will then be able take this into account when they
plan your treatment.
It is also important to mention if your diet might be lacking in vitamins or if you drink
quite a lot of alcohol. This is because it might be helpful for you to be prescribed
vitamin supplements to cut down your risk of developing peripheral neuropathy while
you are on chemotherapy.
You might be advised to avoid alcohol while you are on treatment for lymphoma. Ask
your medical team about this. If you are diabetic, it will help if you can control your
blood sugar as well as possible.
Researchers are trying to find ways of preventing nerve damage from occurring. One
possible way of doing this is to give a 'neuroprotective' treatment at the same time as
the chemotherapy, though this should still be regarded as experimental. Amifostine,
which can be given with platinum-containing chemotherapy drugs like cisplatin, is one
example of this approach. You could ask your medical team if they would recommend
this type of drug for you.
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Coping with the symptoms
•Some people find that gentle exercise of the fingers and toes by flexing and
stretching the muscles for a few minutes four times a day can help.
• Gently massaging your fingers and toes can be helpful.
•If possible, avoid things that make your symptoms worse, such as cold or alcohol –
wear warm gloves and socks in cold weather for example.
•Burning feet can be helped by cooling them down with cooling gels. Alternatively,
standing barefoot on a cold floor or putting your feet in cold water for a few minutes
can relieve the burning.
•If your legs are very sensitive you might find it helps to lift the bedclothes off them
at night using a bed cradle.
•If you are constipated, ask your doctor for advice about using laxatives, drink plenty
of fluids and eat a diet rich in fruit, vegetables and wholegrains.
Some people with neuropathy have found relaxation techniques and acupuncture have
helped them cope with their symptoms.
Keeping safe
• Wear gloves when gardening or washing up.
•Take care when you are making hot drinks or cooking and always use oven gloves –
it is easy to burn your fingers when you can’t detect extreme temperatures.
•Test bathwater temperature using your elbow or a thermometer, or get someone
else to check it before you get in. You can also use a thermometer to check the
temperature of washing-up water.
•Wear sensible footwear that fits well, avoid high heels, and check your feet every
day for places that might be rubbing or reddened. If you have any concerns about
your feet you should consult a chiropodist rather than try to treat them yourself.
•Cut down your risk of tripping by making sure your rooms, passageways and stairs
are well lit and free of clutter.
If you are finding it difficult to manage day-to-day tasks or to get about your home
or outside because of neuropathy, ask to be referred to a physiotherapist or an
occupational therapist. A physiotherapist might be able to organise aids such as
sticks, braces or splints and can advise on exercises that might help. An occupational
therapist might be able to advise you on adaptations to help you around the home if
you have muscle weakness or balance problems.
Peripheral neuropathy might not affect you very much or for very long. For some
people, however, it can be more severe or long-lasting. If your symptoms are severe,
you may feel very anxious, frustrated or depressed. Don’t hesitate to ask your medical
team for help and advice if you find your symptoms difficult to cope with.
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Conclusion
• P
eripheral neuropathy is quite a common side effect of some chemotherapy drugs,
especially vincristine.
•Tell your medical team if you have any symptoms of peripheral neuropathy before
your treatment starts, if your diet is poor or if you drink a lot of alcohol.
•Tell your medical team straightaway if you develop any of the symptoms of peripheral
neuropathy, such as pins and needles, numbness, clumsiness or unsteadiness.
• You can have your treatment adjusted if peripheral neuropathy develops.
•Your lymphoma can still be successfully treated even if you develop peripheral
neuropathy and have to have your treatment changed.
•Peripheral neuropathy is often reversible if caught early, though symptoms can take
weeks or even months to go away.
• Take precautions to prevent injuring yourself while you have peripheral neuropathy.
•There are things you can do yourself to help with the symptoms and there are
treatments that the doctor can prescribe if you need additional help.
Acknowledgement
We would like to thank Dr Rob Hadden, Consultant Neurologist at King's College
Hospital NHS Foundation Trust, London, for reviewing this article.
Useful organisations
The Neuropathy Trust
Provides information and supports people affected by peripheral neuropathy and
neuropathic pain.
PO Box 26
Nantwich
Cheshire CW5 5FP
www.neurocentre.com
British Red Cross
Has a medical equipment lending service – get in touch with your local office (contact
details available online).
www.redcross.org.uk
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)
helpline@dlf.org.uk
www.dlf.org.uk
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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.
Coyle N, et al. Understanding peripheral neuropathy (CancerCare booklet). 2008 Elsevier
Oncology, New York, USA. Available at: http://media.cancercare.org/publications/
original/10-ccc_neuropathy.pdf (accessed 18 July 2013).
Maloney KW. Nursing management of chemotherapy-induced peripheral neuropathy
(CIPN). OncoLink, 2012. Available at: http://www.oncolink.org/resources/article1.
cfm?c=424&id=1010 (accessed 18 July 2013).
Perry MC (editor). The Chemotherapy Source Book. 4th edition. 2007. Lippincott
Williams & Wilkins, Philadelphia, USA.
Kaley TJ, DeAngelis LM. Therapy of chemotherapy-induced peripheral neuropathy. British
Journal of Haematology, 2009. 145: 3–14.
Baehring JM, et al. Neurological manifestations of Waldenström macroglobulinemia.
Nature Clinical Practice. Neurology, 2008. 4: 547–556.
Wickham R. Chemotherapy-induced peripheral neuropathy: a review and implications
for oncology nursing practice. Clinical Journal of Oncology Nursing, 2007. 11: 361–376.
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How we can help you
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(9am–6pm Mondays–Thursdays; 9am–5pm Fridays) or  information@lymphomas.org.uk
●
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information sheets and booklets about lymphoma (free of charge)
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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 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: August 2013
Next planned review: 2015
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