Neuropathy

Neuropathy is a condition that causes tingling or numbness in certain areas of the body, especially the hands and feet. Knowing what some of the causes are and being able to describe your symptoms to your health care team can help you manage neuropathy.

Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources

Neuropathy is a common disorder that affects about 1 to 2 percent of Americans. It is a condition that occurs following damage to a single nerve or multiple nerves. There are different types of neuropathy that can occur. However, peripheral neuropathy is by far the most common in patients with cancer. For this reason, this document focuses on peripheral neuropathy.

The human nervous system is divided into central and peripheral parts:

• The brain and spinal cord make up the central nervous system.
• The peripheral nervous system includes the cranial nerves that leave the brain and the nerves that come off the spinal cord and go to the internal organs, limbs and skin.

What causes peripheral neuropathy?

Diseases, injuries, and toxins (such as chemotherapy) can cause peripheral neuropathy in cancer survivors at any phase of diagnosis and treatment. Damage may lead to changes in sensation or muscle function and can be mild or severe. This condition may be experienced as tingling or numbness in certain areas of the body, commonly the hands and feet. These sensations can range from mild to painful.

It is not easy to deal with neuropathy. If you begin to notice symptoms, talk to your health care team immediately.

Some causes of peripheral neuropathy may include:

• Diabetes mellitus (sugar diabetes) – the most common cause of neuropathy in the industrialized world
• Infections such as leprosy, syphilis, HIV and some forms of hepatitis
• Nutritional deficiency, particularly of thiamine
• Inherited disorders of metabolism and other diseases passed down through families
• Alcohol
• Pesticides
• Drugs used in cancer treatment, particularly the platinum compounds, the taxanes, the vinca alkaloids, velcade, and thalidomide
• Hypothyroidism
• Renal failure
• Extreme stress including the stress of living with a chronic illness
• Radiation therapy (effects may be delayed for many years)
• Some cancer tumors

What are the symptoms of neuropathy?

Peripheral neuropathy can affect the nerves which allow you to tell the position of your hands or feet, the nerves that allow you to sense hot or cold, or the nerves that carry pain sensation. The types and severity of neuropathy symptoms vary greatly. It is difficult to determine the degree of peripheral nerve injury only by the symptoms produced. Peripheral neuropathy symptoms are almost always greatest at night.

Common signs and symptoms include:

• Numbness or tingling, especially of the hands or feet
• Pain or cramping, especially of the hands , feet or calf muscles
• Sensitivity to touch or temperature
• Loss of reflexes
• Muscle wasting in the hands and feet
• Weakness, especially in the feet or hands
• Clumsiness
• Loss of balance, particularly in the dark
• Dizziness, especially when getting up from a bed or a chair
• Sexual dysfunction

Are some survivors at greater risk for neuropathy?

Neuropathy may occur from cancer or the treatment received. The following types of cancer may bring a higher risk:

• Lung
• Breast
• Ovarian
• Myeloma
• Lymphoma and Hodgkin's disease
• Testicular

In addition, the following factors may increase the chances of developing neuropathy:

• Advanced age
• A family history of neuropathy (such as with familial diabetes)
• Malnourishment
• Excessive use of alcohol
• Having a preexisting medical condition such as diabetes or thyroid dysfunction
• Some medications (including chemotherapy medications) also increase risk.

Discuss the possibility of medication-related risks with your health care team. For example, chemotherapy medications that are thought to increase the risk of neuropathy include:

• Platinum compounds
• Taxanes
• Vinca alkaloids
• Thalidomide
• Velcade
• Cytosine arabinoside
• Misonidazole
• Interferon

When might a survivor experience neuropathy?

Peripheral neuropathy symptoms are often ignored by both patients and health care professionals. Symptoms are frequently not recognized as being related to peripheral nerve damage. In some cases, such as with lung cancer, neuropathy may be the earliest sign of the cancer. If you have symptoms of neuropathy, it is important to discuss this with your health care team as soon as possible.

Neuropathy may be delayed in onset. Neuropathy may develop during the course of cancer treatment (such as with vinca alkaloids or taxanes) or shortly after (more common with the Platinum compounds). It often continues after cancer treatment has been completed. Nerve injury from radiation therapy can be quite delayed, with symptoms occurring years after treatment in some cases.

Can neuropathy be cured?

The peripheral nerves have a great ability to heal. Even though it may take months, recovery can occur. However, in some situations, symptoms of neuropathy may lessen but not completely go away. For example, nerve injury caused by radiation often does not recover well. Neuropathy caused by chemotherapy is also difficult to cure, and recovery may take 18 months to five years or longer. During recovery of platinum-induced neuropathy, patients may suffer increased symptoms. Unfortunately, some patients with neuropathy from chemotherapy never recover.

Even if your neuropathy cannot be cured, you may benefit from treatments to relieve your symptoms and rehabilitation designed to help you maintain your physical abilities.

What are the treatments for neuropathy?

The treatment for peripheral neuropathy depends on the cause. If it is related to nutritional deficiencies, supplements may help. If the neuropathy is related to a medical condition, such as diabetes or thyroid dysfunction, treating the condition can sometimes reverse the neuropathic symptoms.

For neuropathy related to chemotherapy, most treatments are supportive and designed to improve symptoms and function. If problems develop during treatment and you continue to receive chemotherapy, the neuropathy can get worse. Clinical trials research shows promise in some treatments with medications that help peripheral nerves to heal and prevent the neuropathy associated with chemotherapy from occurring or being as severe.

Recovery may be helped by:

• Good nutrition including foods rich in thiamine, protein and antioxidants
• Controlling and correcting contributing conditions such as diabetes or hypothyroidism
• Appropriate pain medications
• Physical and occupational therapy

How can neuropathy affect day-to-day living?

Pain from neuropathy can greatly affect your daily activities and quality of life. Symptoms of neuropathy can range from mild to severe. Each survivor's experience will be different. However, with appropriate treatment, the effects of neuropathy can be limited.

Medications, lifestyle changes, rehabilitation and other treatments may be useful to address challenges of neuropathy such as:

• Difficulty standing for long periods or walking without assistance
• Problems with balance and an increased risk of falling
• Difficulty with activities like buttoning and tying laces or ties
• Sensitivity to heat or cold
• Numbness or lack of pain sensation
• Pain

Survivors with temperature sensitivity should avoid extreme temperatures, and use protective clothing as needed. If there is numbness or an inability to feel pain, it is important to pay careful attention to the skin on the hands and feet because there could be an undetected wound or a break in the skin.

If there is pain, day-to-day activities such as putting on shoes or using covers over the feet at night can be difficult. Keep in mind that there are treatments that can lessen the pain. Talk with your health care team about potential treatments as soon as possible.

If neuropathy affects your ability to feel the foot pedals of a car, you should not drive unless your car is adapted for hand controls. Slowed reaction time in moving your foot from the accelerator to the brake pedal may cause an accident. If you lose the ability to drive, you may feel you are losing your independence. However, consider the increased risk to your safety, and to the safety of others.

Ask your health care team to provide suggestions and special equipment to make daily tasks safe and easier to manage. The suggestions may include night lights, grab bars and other home safety measures to help reduce the risk of falling. Physical and occupational therapists can assist survivors with physical exercises that can help them maintain physical abilities.

For some, neuropathy and the changes that may be required to manage it can lead to physical and mental stress. Watch for signs of depression, and seek immediate help from your health care team. In some cases, a referral to a licensed counselor may be needed to deal with challenges and strong emotions.

This document was produced in collaboration with:

Arthur Foreman, M.D.

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Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.

• Talk to your health care team.
  
  
  • Ask your health care team to discuss the symptoms and treatment of neuropathy.
  • Ask about what treatments might work for you.
  • Ask how to manage the symptoms of neuropathy.
  • Ask about physical and occupational therapy and whether they can help you.
  • Ask if there is a long-term survivor group you can call to talk to about living with neuropathy.
• Always prepare for appointments with members of your health care team.
  
  
  • Use a notebook or journal, such as the LIVESTRONG Guidebook Planner and Journal, to write down information about your pain.
  • Write down pain information such as a description of the pain level, when the pain occurred, how long it lasted, and what worked (and did not) to provide pain relief.
  • Talk to your health care team about the benefits and risks of medications and other treatments prescribed for pain.
  • Keep track of any medication you take for pain including the name, dosage and any reactions you may have.
  • Ask your health care team about alternative or complementary therapies.
  • Bring pain information to your appointment along with all of your medication bottles.
  • Be certain that all of your health care providers are aware of the medications you are taking, including vitamins and over-the-counter medications.
  • Take notes during medical appointments, and write down your next appointment date.
  • Bring extra copies of important documents with you to give to the health care team (or email, fax or mail these documents in before the appointment).
• Talk to your health care team about medications and treatments that are prescribed for pain:

  Medications are commonly prescribed by physicians to help control pain. It is important to understand as much as you can about the medications you are taking. Include questions such as the following when you ask your health care team about medications:

  • What is the name of the medication?
  • How much should I take (dosage and strength)?
  • When should I take this medication?
  • Should I eat before I take it?
  • Does this medication have any side effects?
  • Will this medication interfere or react with other medications I take?
• Keep track of all medications, over-the-counter medicines, and vitamins or supplements that you take:

  Some of the things that may help you:

  • Pill dispensers
  • Making lists
  • Asking a family member or friend to help you keep track
• Ask your health care team about complementary or alternative therapies:

  Complementary or alternative therapies can be used along with medications to help you manage your pain. Some complementary therapies you may want to discuss with your health care team:

  • Acupuncture
  • Aromatherapy
  • Art
  • Dance
  • Diet and nutrition
  • Herbs, vitamins and minerals
  • Music
  • Meditation
  • Reflexology
  • Tai Chi
  • Yoga
  • Massage
  • Spiritual care
• Consider joining a cancer support group.

  Cancer support groups exist in most communities. They can provide a safe environment to share experiences with other survivors, learn new ways to handle difficult situations, and talk about emotions. You can learn about different styles of coping with stress and how others adjust to life as a cancer survivor.

  If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you. Some ways to find out more about support groups in your area include:

  • Asking your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
  • Calling a nearby cancer center or university hospital and ask about support groups.
  • Contacting a nonprofit cancer organization to request a list of support groups and cancer centers in your area.
  • Visit LIVESTRONG Navigation Services at LIVESTRONG.org/Get-Help, or call toll-free at 1.855.220.7777 for information on support groups.

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Additional Resources

The resources listed below provide more detailed information and support services to help you with neuropathy. Please read the Detailed Information and Suggestions document for more information and questions to ask.

LIVESTRONG Care Plan
www.LIVESTRONGcareplan.org

This free online tool was created to help you develop a personalized plan for post-treatment care. It can help you work with your oncologist and primary health care provider to address medical, emotional and social challenges that may arise after cancer treatment is completed. By answering some questions related to your cancer treatment, you will receive information about your follow-up care. This information includes symptoms to watch for in the future and steps you can take to stay healthy.

LIVESTRONG Navigation Services
LIVESTRONG.org/Get-Help

Online: Complete an intake form through the LIVESTRONG website.
Phone: 1.855.220.7777 (English and Spanish)
Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about fertility risks and preservation options, treatment choices, health literacy and matching to clinical trials. Emotional support services, peer-to-peer matching and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG has partnered with several organizations including Imerman Angels, Navigate Cancer Foundation, Patient Advocate Foundation and EmergingMed.

Cancer Hope Network
www.cancerhopenetwork.org

Email: info@cancerhopenetwork.org
Phone: 1-877-HOPE NET (1-877-467-3638)
This number is answered Monday-Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours.

Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. They offer support by matching cancer patients or family members with trained volunteers who have already undergone and recovered from a similar cancer experience. You can submit your request by phone or by email. A volunteer will try to contact you within 24 hours.

National Institute of Neurological Disorders and Stroke
www.ninds.nih.gov

Email: braininfo@ninds.nih.gov
Phone: 1-800-352-9424
TTY for deaf and hard of hearing callers: 301-468-5981

The National Institute of Neurological Disorders and Stroke has general information on peripheral neuropathy. Information on clinical trials and research developments is also included.

The Neuropathy Association
www.neuropathy.org

Email: info@neuropathy.org
Phone: 1-212-692-0662

The Neuropathy Association is the leading national patient-based nonprofit organization whose mission is to provide patient support and education, advocate for patient's interests, and promote research into the causes of and cures for peripheral neuropathies. The organization works to connect patients with one another through its active network of members, regional chapters, neuropathy centers and support groups across the U.S. Peripheral neuropathies are among the most common neurologic complications of cancer.

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