I developed CIPN in 2011; after chemo treatment for bowel cancer. These are common outcomes, directly linked to the drug Oxaliplatin.
My symptoms peaked in 2012 and improved over 2012 - 2014. Despite my best efforts, over the last 6 years I have grown to accept that I have permanent damage that will not resolve. I'm clear on that from expert medical advice.
I cope during the day but struggle to sleep. I have tried 12 +/- medications over this 9 year journey. Most work for 2-3 months, then the chronic pain symptoms take over, or the recommended increase in dosage required to sleep leaves me catatonic during daylight hours.
All background, to my question: what's the latest trial data about any "new" drugs that could treat CIPN and/or insomnia, linked to chronic pain? Also, are there any trials on the efficacy of natural drugs, I have been experimenting with monthly Vitamin B12 injections.
Many thanks in advance.
Welcome to our online community and thanks for posting your questions.
Chemotherapy-induced peripheral neuropathy (CIPN) is an increasingly common side effect of cancer treatment that can have a huge impact on your quality of life. It’s clear that you’ve sought expert medical advice over the last 9 years but frustratingly continue to struggle with pain.
The American Society of Clinical Oncology (ASCO) updated their guidelines on prevention and management of CIPN in August 2020. Duloxetine is recommended for the treatment of pain, although the benefit is modest. Three approaches (scrambler therapy, acupuncture and exercise) may reduce symptoms and appear to be reasonably safe, but further research is needed to explore how they can be specifically recommended.
Pain is a common cause of insomnia. Management of the pain is the best way to improve sleep. However, as sleeplessness can increase pain intensity and frequency, insomnia treatment can help with optimal pain relief.
Many insomnia therapies (e.g. CBT, sedating antidepressants, gabapentin) have overlapping indications for various pain syndromes and could be good choices for people where a secondary sleep benefit is helpful.
Our community team will contact you directly as I can send further information from a subscription only resource called Up To Date.
Up To Date details the current approaches to treating both CIPN (it discusses the use of vitamins/minerals/dietary supplements) and insomnia. This is an evidence-based knowledge system authored by physicians to help clinicians make the right decisions at the point of care. All Up To Date content is written and edited by a global community of physicians, world-renowned experts in their specialties, who follow a rigorous editorial process, continually reviewing the content to ensure it is of the highest quality and based on the latest evidence.
You can look at the current clinical trials at Cancer Research UK (they don’t list any trials currently but have this information about CIPN on their website), the ISRCTN registry (2 trials listed) and the National Institute for Health Research (1 trial listed).
We’d recommend talking to your doctor, neurologist or pain team who are overseeing your CIPN treatment to discuss any drugs/therapies you’d like to investigate further or consider trying. This is important given your extensive previous treatment and will allow you to agree on the best way forward. And importantly, monitor how you get on.
It could also be worthwhile asking if you can be referred to a late effects of cancer treatment clinic like this one.
I hope this information helps. Don’t hesitate to get back in touch if you need anything.
Best wishes, Karla (Cancer Information Nurse Specialist).
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