September 29, 2011

Involuntary Foxtrot

I inherited Restless Leg Syndrome via Mum, from her Mum. Nanna would often complain of her 'jumpy' legs and then I started to get it, albeit infrequently, in my late teens.

Now I have it 24-7, thank you chemo
The Foxtrot, male moves

It feels like excitement that builds in my feet and then runs up my legs...then builds in my feet and then runs up my legs. Since starting chemo my arms have joined the dance. It isn't painful, but it does make sleep difficult.

That my legs and arms tingle like they want to dance is a side effect of oxaliplatin, a cool drug that I am given as part of my chemotherapy Folfox4. It isn't the star of the show, that title belongs to 5FU, but oxaliplatin has more interesting side effects.

I've gone platinum

Oxaliplatin (let's call it Ox from here on in) is a molecule with the metal platinum at its centre. 

Ox works well along side 5FU and enhances its effects. Like most chemotherapy drugs, Ox interferes with how cells copy and repair themselves. It particularly effects colorectal cancer cells, but is by no means specific to these cells. It's what oncologists call 'non-targeted therapy'.

Ox also affects nerves, mainly those in the hands, feet and mouth.

Pins and needles on your tongue

For the first few days after receiving Ox the body is hypersensitive to cold things. A cold drink makes your throat feel like you're trying to swallow matchsticks. Picking an apple from the fridge results in pins and needles in your fingers. Eating an icecream (as I discovered the other day) gives you waves of pins and needles on the inside of your lips and mouth. The sensation felt so interesting that I was forced to finish the whole ice cream.


Lots about cancer and its treatment remains unknown. It's not clear exactly how Ox affects peripheral nerves, like the ones in the hands and feet. It's believed to work by affecting gates in the nerve cell membrane that let ions – electrically charged sodium – in and out of the cell. These gates are called voltage-gated sodium channels. When lots of these gates open, lots of sodium ions enter and cause a shift in the charge inside the cell. This change in charge is how nerve cells go about the business of talking to other nerve cells.

Ox probably affects how these channels work by interfering with the concentration of charged calcium ions inside the cell. Messed up calcium ions mean the sodium gates get a bit carried away, become hyperexcited, and you get pins and needles when drinking something that isn't really that cold.

During Folfox4, people are given calcium and magnesium before Ox to minimise the number of these hyperexcited nerves.

Hyperexcited is also the best term to describe my Foxtrotting arms and legs.


  1. Will this syndrome go away after you finish chemo?


  2. A lot of people end up with some kind of small neuropathy after having Ox. Restless legs and arms shouldn't really hang around though. It comes and goes now, and hopefully once chemo finishes it just goes.

  3. Hi enjoying reading your blog very interesting , hope you are doing well. I have inherited rls from my father and know exactly how you feel when trying to sleep it can be horrendous, do you also have periodic limb movements in your sleep?