Fight for Diagnosis
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) state that chemotherapy-induced peripheral neuropathy is a common and often under-recognised symptom,” 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’.
With no support from the NHS for long term side effects, I went off to Dr. Google, and sent questions across to the States, to ASCO websites and MD Anderson,Dana-Farber (gosh, were they helpful – bless them). I found 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.
Lead study author Kerri M. Winters-Stone, PhD, a research professor at Oregon Health and Science University in Portland, Oregon stated, “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.”
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 balanceduring upright movement, and specific gait training.
- 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 that might help alleviate pain from your neuropathy. Massage can potentially help to improve your circulation, decrease pain, lower anxiety or depression and increase flexibility. Forms of relaxation therapies including meditation, yoga and Reiki might have an effect 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 (very small study here) suggesting its positive effect on improving a wide range of symptoms and side effects, including chemo induced neuropathy.
Transcutaneous electrical nerve stimulation (TENS) is a form of therapy that sends small currents of electricity to nerves in the affected area. Small 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.
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!
Verite Huguenot blogs on https://aftercancers.com sharing her experiences of life after breast cancer and tips for long term side effects.