It's amazing how articles about various forms of neuropathy from different causes, end up revealing more or less the same information, especially regarding dealing with the symptoms; so this is worth reading for all neuropathy sufferers. Cancer is unfortunately a possibility for us all. The extra information at the end is directed at UK readers.
Peripheral Neuropathy And Chemotherapy Treatment
Beating Bowel Cancer Forum via Gov.UK July 1st 2013
This factsheet has been written to support bowel cancer patients who are about to embark on a course of oxaliplatin, a common chemotherapy drug, which can cause temporary, and in some cases, more long-lasting side-effects such as tingling or numbness in the hands and feet. It is important that you work together with your hospital team to manage these side-effects and prevent problems in the future.
Oxaliplatin (Eloxatin) is a platinumcompound chemotherapy drug given to bowel cancer patients when their cancer has spread, locally into the lymph nodes or into other organs. It is usually given in combination with other drugs, for example:
Beating Bowel Cancer Forum via Gov.UK July 1st 2013
This factsheet has been written to support bowel cancer patients who are about to embark on a course of oxaliplatin, a common chemotherapy drug, which can cause temporary, and in some cases, more long-lasting side-effects such as tingling or numbness in the hands and feet. It is important that you work together with your hospital team to manage these side-effects and prevent problems in the future.
Oxaliplatin (Eloxatin) is a platinumcompound chemotherapy drug given to bowel cancer patients when their cancer has spread, locally into the lymph nodes or into other organs. It is usually given in combination with other drugs, for example:
with 5FU (FOLFOX)
with 5FU and irinotecan (FOLFOXFIRI)
with capecitabine (XELOX or CaPOX)
Oxaliplatin is given as a slow, intravenous infusion which is repeated at regular intervals, every two or three weeks, depending on the treatment you have been prescribed. Side-effects from oxaliplatin may include: nausea, vomiting and diarrhoea and it can affect normal blood clotting, leading to bleeding gums, nose bleeds and bruising.
Peripheral neuropathy is another, potentially significant, side-effect of oxaliplatin, which causes altered sensations in your hands and/or feet. This is because this drug can affect the nerve endings; the longer the nerve, the more likely it is to be damaged. Nerves going to the hands, feet and lower legs are some of the longest in the body. It can also
affect nerve endings in the chest, neck or throat, causing feelings of tightness in the chest and jaw and a strange feeling in your tongue.
This side-effect is called peripheral neuropathy, because it only affects the nerve ending in the extremities of your body, in particular the hands, feet and lower legs.
with 5FU and irinotecan (FOLFOXFIRI)
with capecitabine (XELOX or CaPOX)
Oxaliplatin is given as a slow, intravenous infusion which is repeated at regular intervals, every two or three weeks, depending on the treatment you have been prescribed. Side-effects from oxaliplatin may include: nausea, vomiting and diarrhoea and it can affect normal blood clotting, leading to bleeding gums, nose bleeds and bruising.
Peripheral neuropathy is another, potentially significant, side-effect of oxaliplatin, which causes altered sensations in your hands and/or feet. This is because this drug can affect the nerve endings; the longer the nerve, the more likely it is to be damaged. Nerves going to the hands, feet and lower legs are some of the longest in the body. It can also
affect nerve endings in the chest, neck or throat, causing feelings of tightness in the chest and jaw and a strange feeling in your tongue.
This side-effect is called peripheral neuropathy, because it only affects the nerve ending in the extremities of your body, in particular the hands, feet and lower legs.
Short-term (acute) neuropathy
Almost everyone who receives this chemotherapy will experience some degree of peripheral neuropathy soon after receiving the treatment. The symptoms begin during or shortly after an infusion of oxaliplatin and usually disappear a few days after treatment ends. As treatment continues symptoms may last longer or become more
noticeable. They are often triggered by eating, drinking, or touching something cold or breathing cold air. Most people cope well with the short-term symptoms of peripheral neuropathy with only a few changes to their lifestyle.
Symptoms include:
A change in sensation; You may have a feeling of heaviness, burning or pins and needles in the affected area. Or, you may notice unusual sensations, such as a feeling of warmth or burning when touching something cold. Or, you may notice a loss of sensitivity or feeling, starting in your feet and fingertips.
Increased sensitivity and pain; For the first 48 hours after your treatment, you will feel much more sensitive to the cold. You may find that even the lightest touch or pressure in the affected area feels uncomfortable or painful. You may experience a sharp, stabbing or burning sensation, or it may feel like minor electric shocks. If the pain becomes more severe, your doctor can prescribe medication to help relieve it.
Difficulty with balance, walking and coordination: If your feet and/or lower legs are affected, this may make it difficult to walk, climb stairs or keep your balance. You may find that you stumble or trip more often, especially on uneven surfaces.
Difficulty with everyday tasks: You may feel clumsy at times and less in control of your movements. If your fingers are affected, you may not be able to do ‘fiddly’ tasks, such as fastening buttons or tying your shoelaces.
Things you can do to help
It is important to protect your hands and feet by keeping them warm at all times. Use gloves when you go out in cold weather and to avoid touching anything cold.
Wear socks to keep your feet warm. Don’t walk around barefoot at home. Wear a scarf or face mask if you must go outside in cold weather.
Don’t eat or drink cold or even cool foods. Eat food that is at room temperature. Don’t sit in an air-conditioned room or car.
Try to go for a walk every day, even for a short distance. This will prevent muscle
weakness, which adds to your general lack of balance. Wear soft shoes and add
padded insoles to make walking less painful.
If it’s a cold day when you have your treatment, bring gloves, a blanket, and warm socks.
Keeping safe with peripheral neuropathy
Always wear gloves when working in the garden and use oven gloves in the kitchen to avoid injury. Take special care with kitchen knives and tools.
Clear your house and garden of things you might trip on such as rugs, slippery surfaces
and clutter on stairs and steps. Make sure rooms are well lit and always put a light on if
you get up during the night.
Always test water with part of your body not affected by neuropathy such as your elbow before you bathe, shower, or wash dishes. Turn your hot-water thermostat to a lower setting. It is easy to burn yourself if you cannot judge the temperature of water. Put a skid-proof mat in the bathtub or shower cubicle, and consider using a shower stool.
If you have problems balancing or walking, ask for a referral to a physical therapist to strengthen muscles, build balance, or prescribe a walking aid. An occupational therapist may be able to help adapt your home so daily activities are easier and safer for you.
Check your feet every day for redness, injuries, or blisters and tell your nurse if you are concerned. It is important to avoid an infection developing.
Long-term (cumulative) neuropathy
As your treatment with oxaliplatin continues, the amount of platinum stored in your body builds up and this increases the risk of a longerlasting sensory neuropathy in your hands and feet. You are more at risk of these effects if you have anaemia, diabetes, or low levels of certain minerals and vitamins. Neuropathy caused by oxaliplatin usually gets better once the treatment is stopped, although some patients will experience a temporary increase in symptoms after treatment ends. However, if you have lingering numbness in your hands and feet between treatments, it is important to tell your medical team, because the cumulative numbness can be long lasting if the drug isn’t stopped promptly. About 10 – 20% of patients will experience these long-term
side-effects, which may persist for up to twelve months after treatment finishes. For a very small percentage of people, the changes will be permanent.
How your hospital team can help
It is very important to let your oncologist or nurse know if symptoms of neuropathy last beyond a few days after a chemotherapy treatment. Keep track of tingling, pins and needles, numbness, pain, or difficulty with normal activities and let your team know if they are getting worse. It is possible to reduce the dose or to change your treatment regime so that oxaliplatin is given less frequently.
There are also several treatments which can be tried to alleviate the symptoms and researchers are looking at how best to relieve this kind of pain. This might include using medications which might usually be used to treat other conditions (which you don’t have) such as:
Anti-depressant medicines, often in smaller doses than are used to treat depression
Anti-convulsant medicines, which are used to help many types of nerve pain.
It may take more than one approach to try to find out what works best for you. Other treatments that can be tried to ease the discomfort and its effect on your life are physical therapy, relaxation therapy, guided imagery, and acupuncture.
If the doctor thinks that you may be deficient in minerals, due to your diet, the amount of alcohol you drink or for some other reason, you may be given an infusion of calcium or magnesium to help reduce the symptoms.
If the oxaliplatin is stopped because of cumulative symptoms, you will continue to receive the capecitabine or 5FU which is given with it. However, if your symptoms
continue to get worse, your oncologist may suggest that you try another type of anticancer drug or decide to give you a break from chemotherapy.
If you are unable to work
Almost everyone who receives this chemotherapy will experience some degree of peripheral neuropathy soon after receiving the treatment. The symptoms begin during or shortly after an infusion of oxaliplatin and usually disappear a few days after treatment ends. As treatment continues symptoms may last longer or become more
noticeable. They are often triggered by eating, drinking, or touching something cold or breathing cold air. Most people cope well with the short-term symptoms of peripheral neuropathy with only a few changes to their lifestyle.
Symptoms include:
A change in sensation; You may have a feeling of heaviness, burning or pins and needles in the affected area. Or, you may notice unusual sensations, such as a feeling of warmth or burning when touching something cold. Or, you may notice a loss of sensitivity or feeling, starting in your feet and fingertips.
Increased sensitivity and pain; For the first 48 hours after your treatment, you will feel much more sensitive to the cold. You may find that even the lightest touch or pressure in the affected area feels uncomfortable or painful. You may experience a sharp, stabbing or burning sensation, or it may feel like minor electric shocks. If the pain becomes more severe, your doctor can prescribe medication to help relieve it.
Difficulty with balance, walking and coordination: If your feet and/or lower legs are affected, this may make it difficult to walk, climb stairs or keep your balance. You may find that you stumble or trip more often, especially on uneven surfaces.
Difficulty with everyday tasks: You may feel clumsy at times and less in control of your movements. If your fingers are affected, you may not be able to do ‘fiddly’ tasks, such as fastening buttons or tying your shoelaces.
Things you can do to help
It is important to protect your hands and feet by keeping them warm at all times. Use gloves when you go out in cold weather and to avoid touching anything cold.
Wear socks to keep your feet warm. Don’t walk around barefoot at home. Wear a scarf or face mask if you must go outside in cold weather.
Don’t eat or drink cold or even cool foods. Eat food that is at room temperature. Don’t sit in an air-conditioned room or car.
Try to go for a walk every day, even for a short distance. This will prevent muscle
weakness, which adds to your general lack of balance. Wear soft shoes and add
padded insoles to make walking less painful.
If it’s a cold day when you have your treatment, bring gloves, a blanket, and warm socks.
Keeping safe with peripheral neuropathy
Always wear gloves when working in the garden and use oven gloves in the kitchen to avoid injury. Take special care with kitchen knives and tools.
Clear your house and garden of things you might trip on such as rugs, slippery surfaces
and clutter on stairs and steps. Make sure rooms are well lit and always put a light on if
you get up during the night.
Always test water with part of your body not affected by neuropathy such as your elbow before you bathe, shower, or wash dishes. Turn your hot-water thermostat to a lower setting. It is easy to burn yourself if you cannot judge the temperature of water. Put a skid-proof mat in the bathtub or shower cubicle, and consider using a shower stool.
If you have problems balancing or walking, ask for a referral to a physical therapist to strengthen muscles, build balance, or prescribe a walking aid. An occupational therapist may be able to help adapt your home so daily activities are easier and safer for you.
Check your feet every day for redness, injuries, or blisters and tell your nurse if you are concerned. It is important to avoid an infection developing.
Long-term (cumulative) neuropathy
As your treatment with oxaliplatin continues, the amount of platinum stored in your body builds up and this increases the risk of a longerlasting sensory neuropathy in your hands and feet. You are more at risk of these effects if you have anaemia, diabetes, or low levels of certain minerals and vitamins. Neuropathy caused by oxaliplatin usually gets better once the treatment is stopped, although some patients will experience a temporary increase in symptoms after treatment ends. However, if you have lingering numbness in your hands and feet between treatments, it is important to tell your medical team, because the cumulative numbness can be long lasting if the drug isn’t stopped promptly. About 10 – 20% of patients will experience these long-term
side-effects, which may persist for up to twelve months after treatment finishes. For a very small percentage of people, the changes will be permanent.
How your hospital team can help
It is very important to let your oncologist or nurse know if symptoms of neuropathy last beyond a few days after a chemotherapy treatment. Keep track of tingling, pins and needles, numbness, pain, or difficulty with normal activities and let your team know if they are getting worse. It is possible to reduce the dose or to change your treatment regime so that oxaliplatin is given less frequently.
There are also several treatments which can be tried to alleviate the symptoms and researchers are looking at how best to relieve this kind of pain. This might include using medications which might usually be used to treat other conditions (which you don’t have) such as:
Anti-depressant medicines, often in smaller doses than are used to treat depression
Anti-convulsant medicines, which are used to help many types of nerve pain.
It may take more than one approach to try to find out what works best for you. Other treatments that can be tried to ease the discomfort and its effect on your life are physical therapy, relaxation therapy, guided imagery, and acupuncture.
If the doctor thinks that you may be deficient in minerals, due to your diet, the amount of alcohol you drink or for some other reason, you may be given an infusion of calcium or magnesium to help reduce the symptoms.
If the oxaliplatin is stopped because of cumulative symptoms, you will continue to receive the capecitabine or 5FU which is given with it. However, if your symptoms
continue to get worse, your oncologist may suggest that you try another type of anticancer drug or decide to give you a break from chemotherapy.
If you are unable to work
If long-term symptoms make it difficult for you to walk or carry out your normal daily activities, you may be entitled to financial help. If you are aged 16 to 64 you can apply for a Personal Independence Payment (PIP) to help with some of the extra costs caused by your condition. The payment is of up to £134 a week and you will need an assessment to work out the level of help you get. People aged 65 and over can apply for an Attendance Allowance to help with personal care.
Benefit Enquiries
PIP - T: 0800 917 2222
Attendance Allowance - T: 0800 88 22 00
www.gov.uk
Further support
There is more information about managing the side-effects of chemotherapy and monoclonal antibody therapy in these Beating Bowel Cancer publications, which can be downloaded from our website or requested as hard copies:
‘Bowel Cancer Treatment - Your Pathway’
‘Advanced Bowel Cancer - Treating Metastases’
‘Living With Bowel Cancer - Eating Well’
http://www.beatingbowelcancer.org/sites/default/files/page_files/Factsheet%20Peripheral%20Neuropathy%20V1.0%20Jul%202013.pdf
Benefit Enquiries
PIP - T: 0800 917 2222
Attendance Allowance - T: 0800 88 22 00
www.gov.uk
Further support
There is more information about managing the side-effects of chemotherapy and monoclonal antibody therapy in these Beating Bowel Cancer publications, which can be downloaded from our website or requested as hard copies:
‘Bowel Cancer Treatment - Your Pathway’
‘Advanced Bowel Cancer - Treating Metastases’
‘Living With Bowel Cancer - Eating Well’
http://www.beatingbowelcancer.org/sites/default/files/page_files/Factsheet%20Peripheral%20Neuropathy%20V1.0%20Jul%202013.pdf
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