Chemotherapy induced peripheral neuropathy

Hi Guineapiglover

Very sorry to hear you have CIPN. I have the same after weekly Paclitaxel which finished a year ago today.  It’s a weird feeling having numb balls of the feet then painful burning sensation of the skin.  Last July/August I found I could barely walk with the pain and spent most of the day sitting down with my feet up.  I also found wearing socks and shoes very painful.  Anyway, I eventually got referred to the Pain Team at my cancer hospital who run maybe the only CIPN dedicated clinic in the country.  

The consultants have been fantastic, and I was pleased to hear that they would try topical treatments to start with before reverting to drugs if necessary.  Unfortunately menthol aqueous cream and lidocaine patches did nothing for me, but then they prescribed me Xepin 5% (Doxepin hydrochloride) cream which has been a lifesaver.  It took the burning pain away completely such that I was able to walk down to the shops and I eventually stopped using it at the end of January when I no longer had any pain.  I haven’t needed to use it since and I’m now playing 18 holes of golf five times a week with no issues.  I still have numbness in the balls of my feet but I feel that it’s improving month by month.  I was told the nerves could take 6 months to 3 years to recover, but also a chance of the numbness being permanent, but I’m sure with the improvement I’m currently getting that the nerves will eventually repair with time.

The hospital are also giving me acupuncture which helps the blood flow and release of chemicals which help repair the nerves. I’m convinced this has helped and maybe one of the reasons I don’t need to use the cream anymore.  I have the nerve pain drugs Gabapentin and Pregabalin as a standby in case the cream didn’t work but I’ve luckily not needed to take any.  I did get a rash on my toes which may have been from the cream when I started wearing socks and shoes in the winter but it’s not conclusive or just a coincidence.

I totally understand if you’re feeling down with the pain - it was the lowest I’d felt during my treatment as it’s a constant pain and stops you from doing so many things.  I’d suggest talking to your team to see if you can get referred to the pain team at your hospital.

I hope this has helped. Please don’t hesitate to get back in touch if you have any questions or need further information and I really hope you find some relief at some point.

Loffie xx

Dear Loffie,

Thank you so much for your detailed and very helpful advice. I will indeed ask my oncologist for the cream you mentioned.  This CIPN pain is a terrible price to pay for the chemotherapy treatment and possibly something that new patients would never imagine could happen after all we go through whilst fighting this disease. 

Guineapiglover xx