What is Chemotherapy Induced
Peripheral Neuropathy (CIPN)?
It wasn’t until I developed ‘clumpy feet’ that I learnt this could be a long-term side effect of treatment.
ASCO (American Society for Clinical Oncology) says this can be a side effect of hormonal therapy (pills) as well as Chemo treatment.
Chemotherapy-induced peripheral neuropathy is a common and often under-recognized symptom among the thousands of cancer survivors in the U.S. and worldwide,” said Merry-Jennifer Markham, MD and ASCO Spokesperson.
When I got Neuropathy after cancer treatment, my UK hospital desperately tried to pin this on everything they could think of – I KNEW it was caused by the pills I had taken.
Eventually, after shoving me around London’s hospitals with suggested causes, a 5-page report from King’s College nailed it to side effects of drugs, and as much as said to my cancer hospital ‘stop mucking her around’.
What I had to do
My cancer hospital did NOT like me reporting side effects; as far as they were concerned the drugs were expected to work. Full Stop. I was even collared one day by a group who took me to task, saying I wasn’t supportive of the hospital!
So I went off to Dr. Google, and sent questions across to the States, to ASCO websites, MD Anderson,Dana-Farber (gosh, were they helpful – bless them) and looked at other sites I found (see American websites category on right column).
In the States, a new study of women cancer survivors shows that 45% of us still have CIPN symptoms years after completing cancer treatment. CIPN was associated with worse physical functioning, poorer mobility, and a nearly two-fold higher risk of falls. While more research is needed, these findings may inform rehabilitation and fall prevention interventions tailored to persons with CIPN.
“We can’t dismiss neuropathy as a treatment side effect that goes away, because symptoms persist for years in nearly half of women,” said lead study author Kerri M. Winters-Stone, PhD, a research professor at Oregon Health and Science University in Portland, Oregon. “While there are no effective treatments for this side effect, rehabilitative exercise programs may preserve physical functioning and mobility in the presence of neuropathy to help prevent falls and resulting injuries.”
Depending of the type of chemotherapy received, an estimated 57-83% of patients will have signs of CIPN at some point during or after their care. It is not possible to predict which patient will develop CIPN or how long the symptoms will last. As there are no reliable tools for early detection of CIPN in routine cancer care, it is often not found until the symptoms are debilitating.
So if your GP tries to pooh pooh your symptoms, you are going to have TO MAKE A FUSS. It’s your health, and you need to try and prevent falls, not lie down meekly and accept the consequences.
According to the authors, this is one of the first studies that explored the relationship between CIPN and physical functioning, including risk of falls. The researchers assessed data from 462 women enrolled in exercise intervention trials designed to address fractures and falls in women cancer survivors. The majority (71%) of the women had breast cancer, and others had lung, colorectal, ovarian, or blood cancers.
At an average of six years since cancer diagnosis, 45% of the women still reported some symptoms of CIPN, such as loss of feeling in their hands and feet. Having CIPN symptoms was associated with significantly poorer physical functioning and more self-reported difficulty doing activities of daily living, such as cooking and shopping.
In addition, women with CIPN had altered gait (walking) patterns and a nearly twice as high risk of falling, compared to women without CIPN symptoms. Falls can cause injury, fractures, and possibly earlier death.
The researchers found that women with CIPN have specific underlying impairments that put them at risk for falls, which may be different from the impairments that occur with other conditions, or old age. For example, CIPN does not cause muscle weakness but rather has a distinct effect on movement and gait patterns. In this study, women with CIPN had difficulty rising from a chair, possibly because their brain does not get enough information from their feet about how quickly or forcefully to stand up.
Based on these findings, the authors argue that commonly recommended exercise, such as walking, may be safer for women with CIPN when done on a treadmill with handrails instead of outdoors because their altered gait puts them at increased risk of falling. Machine-based resistance training may also not be beneficial because neuropathy does not decrease leg strength. Instead, rehabilitation efforts should focus on improving balance during upright movement, and specific gait training.
If symptoms of CIPN are detected early, cancer treatments could potentially be changed to prevent these debilitating problems from occurring, or early rehabilitation interventions can be started. Dr. Winters-Stone and her research team are developing a portable, smartphone-driven device that patients can use to detect and quantify symptoms of neuropathy, such as gait and balance impairments.
Men with cancer are as likely to experience CIPN as women. As of now, however, there are less research data on CIPN and physical functioning specifically in men.
This study was supported through grants from the National Cancer Institute, American Cancer Society, and Susan G. Komen for a Cure Foundation.
If you’re experiencing neuropathy in your feet it’s important to find comfortable fitting shoes and socks. You’ll want to buy shoes with a wide edge, ample space around your toes and good arch support. Consider wearing diabetic socks which are specifically designed to help with neuropathy in your feet. They offer a proper fit, soft material and fewer seams that can reduce the pain and potential injury caused by ill-fitting, uncomfortable socks. Proper fitting shoes and socks can help to reduce the pain you’re feeling.
Be mindful when you come in contact with potentially extreme hot or cold temperatures. Because of the reduced sensation, you might not notice when water or kitchen items are too hot which could lead to unseen burns. The same is said for extreme cold temperatures. Be sure to keep your extremities covered and warm during the winter months to avoid frostbite.
As much as possible, try to avoid injury to your hands or feet. Ensure your house is well lit, and remove any potential tripping hazards. Be careful using sharp objects and try to wear gloves when gardening or washing dishes. Inspect your hands and feet regularly to ensure that you have not cut or burned your skin. Oftentimes, the numbness or tingling can cause injuries to go unnoticed.
There are several types of integrative approaches you can take to help alleviate pain from your neuropathy. Massage can potentially help to improve your circulation, decrease pain, lower anxiety or depression and increase flexibility. Evidence suggests that forms of relaxation therapies including meditation, yoga and Reiki can have a positive effect on reducing pain and also on reducing the anxiety caused by the pain of neuropathy.
Acupuncture, a key part of Traditional Chinese Medicine, has become more and more accepted in western medicine with many studies (see here and here) proving its positive affect on improving a wide range of symptoms and side effects, including chemo induced neuropathy. It has been shown to not only reduce neuropathic pain but improve functioning in the effected areas.
Transcutaneous electrical nerve stimulation (TENS) is a form of therapy that sends small currents of electricity to nerves in the affected area. Studies have shown that it can be used successfully to treat nerve pain and increase functioning. However, it didn’t work on me, although others swear by it.
Be sure to speak with your doctor or specialist first if you’re interested in trying these integrative approaches to your pain management.
Peripheral neuropathy can sometimes cause balance and mobility issues. Physical therapy can help to strengthen your weakened muscles and improve your motor functioning.
Physios can teach you balance training exercises that can help with your stability and safe stretches to help with your range of motion. Alternatively, an occupational therapist can help you learn self-care and safety techniques so that you can avoid trips or falls. They can also help to improve your sensory and motor skills and they can teach you techniques for everyday tasks that you may now struggle with. T
And finally – the Americans say “Talk with your doctor about finding a physical or occupational therapist that specializes in chemo induced peripheral neuropathy”. Er- sorry guys. Chance would be a fine thing over this side of the Atlantic!