Peripheral neuropathy post chemo

I have developed peripheral neuropathy (PN to save typing!) post my chemo treatment, my drugs were Oxaliplatin and Capecitabine. These platinum based drugs are a known cause of PN.

As both are known to cause PN, during treatment at each session I was asked how I was with the side effects. 

Common side effects can be 'pins and needles', personally not my description, fatigue and nausea.

There are other symptoms that can develop, depending on the severity, one I have is muscle twitches.

The oncology team didn't seem to recognise my description of 'spasm' when I said I was experiencing them and everyone said I should speak to my GP! (For the record NHS term spasm is painful, twitches not painful!)

Post treatment I was initially told the symptoms would start to subside over six weeks.

As they continued to develop after this six weeks I contacted the oncology support nurses only then did they said it could take longer, no timescale. 

The symptoms have actually continued to develop I am now 8 months since my final chemo cycle, I have now been told by my oncology doctor this is a known but rare problem and is called "coasting" and could be 18 months before I see improvement, or in the worst case be permanent.

 

My reason for this post is to let others know that from my personal experience the NHS information, both in department and online is not as in depth as it could be with regard to post chemo issues.

The Macmillan site has a very good section on Peripheral Neurology should anyone need to read up on the condition.

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  • Hi Pete, 

    I am sorry to hear of your ongoing problems. 
    I finished my chemo of the same regime in Feb 2022 (4 cycles). I developed PN a couple of months later. I am actually feeling much worse than I was whilst on chemo. 

    I am just wondering if you have had any positive movement from neurology. Or any improvement in your symptoms. Or is this likely to be irreversible. 

  • Hi sk2022

    Still waiting on a neurology appointment so no updates on my side.

    The symptoms seem to change, never sure if that's a good sign or not! Hope neurology can enlighten me.

    I was told that most people recover from PN, however mine progressed well after the final chemo, I was told this is called 'coasting', but I still hold out for an improvement.

    I hope you see improvement in your symptoms soon.

    Pete

  • Thank you for your prompt reply Pete. 
    That's an awfully long wait for a neurology appointment. Hoping you see some signs of improvement soon. I have been told it can take up to 2yrs for recovery from PN. 
    I am now 6mnths from my chemo finishing. 

    Are there any medications/topical treatments anyone can recommend. 
    I am experiencing severe sensitivity in the soles of my feet and the pads/skin on the bottom of my feet is thinning, very paper like. I am finding it extremely difficult to walk. 
     

    Any help or advice for this would be very much appreciated. 

     

     

  • Hi Pete, I hope you are still following your thread.I have a very similar experience of PN as you and I have asked to be referred to a neurologist.I am interested to know if you saw your neurologist, what happened and how you are now?

  • Hi Pete, I too am suffering from Peripheral Neuropathy mainly in very cold feet and discomfort in toes.I asked to be referred to a neurologist and wondered if you eventually got to see one and what was the outcome please?Also how are you doing now?

    Maria

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