Beating CIPN pain with Chilli cream

Beating neuropathic pain with hot Chilli “sauce”.

Greetings all and welcome to my A list – OBE. (Over bloody eighty) blog.

The last year has been my “annus horribilis”. Started off with a routine inspection revealing sigmoid colon cancer. Then I moved onto a very ordinary surgery job at Fiona Stanley to replace the sigmoid with a stoma. This was later improved at Fremantle Hospital. But it was six months of chemo therapy lasting from January to July that really knocked me around.

Before I start ranting about the treatment I want to pay a great big tribute to the nurses that staffed the Oncology Unit at Peel Health Campus during my six months of fortnightly, four hour visits. Their dedication and professionalism, when often tendering to some quite depressed patients, was above reproach and deserves the highest merit.

It is a great shame that the same could not be said of their leader who, despite claiming professorial accolades, was far less than forthcoming in providing, what I consider to be essential information to this patient. His only taciturn response to my questions was “sixty per chance of cancer recurring without chemo therapy, forty percent chance if you have chemo”. He scribbled on a paper and instructed me to take it to reception and book my first appointment. End of consult.

How CPIN affects hands

CIPN (Peripheral Neuropathy

No mention of side effects or consequences. I now cynically consider that if I had been warned of what potentially lay ahead I may not have gone through therapy and he would not have been able to claim a stipend. There was certainly no mention of chemically induced peripheral neuropathic pain (CIPN), so not only was I not aware of the condition, I was not alert to early onset symptoms.

Go find in your search engine by all means but in my case the condition led to a virtual complete loss of sensory perception in my feet and hands. The loss of feeling was replaced by what I can best describe as a very painful case of “pins and needles” all day and all night. I needed to take extra medication just to get some sleep. The only way I could locate my feet and fingers was by looking.

No typing, no buttoning, no playing music, no taking a pill from its foil, not even able to hold a pen to sign my name. The condition first appeared after treatment ten of twelve and worsened for the next three months after chemo therapy ended. I started to seriously consider potassium cyanide.

Then one morning I got a brief email from an anonymous person at the Mayo Clinic saying that they may give consideration to trials of Capsaicin to treat the condition. Capsaicin is extracted from very, very hot Chilli Peppers. It was a straw, even my last straw, to give me a slight hope of regaining some of what I had lost.

I next discovered that Qutenza slow release patches which contain Capsaicin are apparently cleared for sale and use in Australia. My spirits rose, but fell again when I found out that, possibly due to lack of prescribing knowledge and therefore demand, Qutenza patches are not sold in Australia.

So my final throw of the dice seemed to be to draw on my Kunzea House experience at formulating and making topical cosmetic creams to try making a cream based on Capsaicin, which I unsurprisingly named ”Chilli Cream”.

The results have been truly AMAZING. I have only been using the cream for four weeks but there is already a noticeable improvement. As an example I have typed this blog and made very few typo’s which would have been a complete impossibility a month ago. I have shared with my wonderful GP and hope to enthuse an oncologist early in the New Year.

I shall keep my readers in touch. Right now touch is the most important word in my life.

UPDATE: The following papers may well be of interest to those suffering from CIPN (Chemically induce peripheral neuropathy) as well as Oncologists and supporting Medical Professionals.

Capsaicin – High Dose for CIPN pain

Capsaicin – CIPN Clinical Trial

Capsaicin Qutenza (Capsaicin Patch)

Capsaicin Qutenza prescribing information

Many thanks to those who have supported me through some very trying days including Karine, Kate, Christine and especially Terry who puts the good word in for me where it counts.

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