As we have noted over the past year, the collateral damage from treatment is often understudied. This is particularly true for peripheral neuropathy—the numb toes, painful feet, and feeling of pins and needles in the fingers. It is really amazing that so little research has been done on neuropathy considering that it is estimated that between 20% and 50% of women treated for breast cancer will experience this painful long-term side effect.
Breast cancer patients who receive certain chemotherapy drugs are at risk of developing chemotherapy- induced peripheral neuropathy (CIPN). The number of women receiving chemotherapy for breast cancer who develop CIPN is not known. A review by the National Comprehensive Cancer Network of studies that looked at how often cancer patients get neuropathy found that the research reported a wide range of percentages. Among the drugs commonly used in breast cancer, the range of incidences of CIPN were:
Taxol/Abraxane 57% - 83% Navelbine30% - 47%
Taxotere11% - 64% Oxliplatin28% - 100%
Some people with neuropathy experience pain, pins and needles, tingling, cold sensitivity, or even the feeling of wearing gloves and stockings. Others lose sensation or function, and experience weakness, numbness, or reduced sensation. Some may experience both.
We still don’t know why some people experience this annoying side effect and others do not. Could it be that some people are genetically more susceptible to developing neuropathy? Might others already have health problems that make their nerves more sensitive to the toxic effects of the drugs? No one knows! That’s why we are going to ask questions about neuropathy and other types of collateral damage from cancer treatments in the Health of Women [HOW] Study. We need insights that will lead to research into the cause that will fill this information void.
We also need more research into how to treat CIPN. Most of the treatment research has been on people with diabetic peripheral neuropathy, but the mechanisms that cause these two types of neuropathy are not the same. Currently, the standard choices for people with diabetes range from the anti-seizure drugs gabapentin (Neurontin) and pregabalin (Lyrica) to the anti-depressants venlafaxine (Effexor) and duloxetine (Cymbalta). All have been shown to work for diabetics, but almost none have been studied in cancer patients.
Some people have found relief from acupuncture, electrical stimulation (TENS), and exercise, and there are clinical trials underway that are looking at whether these methods are effective in breast cancer patients. The solution that has worked for me is wearing toe socks made by Injinji. They look like gloves for your feet and individually hug each toe, which—in my case—makes them happier!
If you are struggling with CIPN, ask your doctor for a referral to a palliative care specialist. In general, oncologists are focused on saving your life or keeping you alive and do not have the expertise to help you deal with the consequences of the disease and its treatments. Doctors who specialize in palliative care recognize that saving your life may be the ultimate goal, but that managing or minimizing the side effects and symptoms of cancer and its treatments is important as well. The American Cancer Society has been a champion of this approach and it is becoming more common and available throughout the country.
So what can we do if we have CIPN? Demand, and when possible, participate in the research that will help us understand what causes it and what can be done to prevent it or treat it. We also need to take steps to improve our quality of life by asking for a referral to a palliative care doctor or team to get the knowledgeable help we need.
Have you found something that works for you? Stay tuned for a [HOW] Study questionnaire on collateral damage. Your experiences matter!