CIPN - Neuropathy after chemo

Hi all

I was diagnosed with a Mediastinal Germ Cell Tumour  in July and under went 15 weeks of intensive  chemo completed in November. It appears to have been successful but I'm awaiting a decision on surgery to complete the process.The Chemo  was CBOP - BEP and took a significant toll on my health, whilst most of the side effects have eased I'm left with Neuropathy  in both my feet and hands. This has changed little since the Chemo ended 8 weeks ago, has anyone else suffered similar side effects and how long did the neuropathy last?

I've been informed that it may never subside  but in many cases it will fade with time. I have no pain but numb feet and hands are making recovery difficult and I lost a lot of leg and arm muscle during the chemo treatment.

Any experience with CIPN (chemical induced peripheral neuropathy) would be useful 

 

John

Parents
  • Hello John,

                   l experienced the same with both hands and feet affected.The hands came back to me over a period of 6-8months,but the feet never have.It has taken about five years for the brain to give  in constantly reminding of loss of feeling and pain.It probably took three years for me to stop stubbing my toe and tripping myself up,thankfully being an ex bike racer l learnt to fall rather well,so l managed to put that to good use during that period of time.Now l only notice it when l climb into bed and only for a while before the mind blanks it out once more.Whilst this may be considered the bad news,it remains a constant and welcome reminder of what a lucky boy l have been to still be here when many others around me during treatment unfortunately have not been able to do the same.

    It does not stop me from doing everything l wish ,and l lead a very active life,l just made a concious decision early on that l rule it and not the other way around. l just got on with it and never ever said l could not do anything because of it and l am now reaping the benefit of doing so.

     l have to say that nothing much l was told would help,did,so l just paid attention to how l placed my feet and got on with it.When painful,rest, then go again,and repeat constantly,but l accept thatr l had one of the problem cases of it.

         Good luck with yours and it could well be in the past for you in six months time,

                                                                                                                                          David

Reply
  • Hello John,

                   l experienced the same with both hands and feet affected.The hands came back to me over a period of 6-8months,but the feet never have.It has taken about five years for the brain to give  in constantly reminding of loss of feeling and pain.It probably took three years for me to stop stubbing my toe and tripping myself up,thankfully being an ex bike racer l learnt to fall rather well,so l managed to put that to good use during that period of time.Now l only notice it when l climb into bed and only for a while before the mind blanks it out once more.Whilst this may be considered the bad news,it remains a constant and welcome reminder of what a lucky boy l have been to still be here when many others around me during treatment unfortunately have not been able to do the same.

    It does not stop me from doing everything l wish ,and l lead a very active life,l just made a concious decision early on that l rule it and not the other way around. l just got on with it and never ever said l could not do anything because of it and l am now reaping the benefit of doing so.

     l have to say that nothing much l was told would help,did,so l just paid attention to how l placed my feet and got on with it.When painful,rest, then go again,and repeat constantly,but l accept thatr l had one of the problem cases of it.

         Good luck with yours and it could well be in the past for you in six months time,

                                                                                                                                          David

Children
  • Hi David

     

    Thanks so much for the reply,  like you I'm also a "biker" and I'm looking forward to summer when I can hopefully  get back on it!

    My cancer has responded well to the Chemo and I am awaiting surgery as the final stage to remove all traces ( fingers crossed). The neuropathy  doesn't cause me any pain but as I lost a huge amount of leg muscle during chemotherapy  I find walking difficult,  the neuropathy makes it worse. 

    Good to know it may take several  months to return so I'll just continue and hope it comes back. 

    At age 57 the recovery may take a little while but hopefully things will return, like you I feel lucky in many ways, my cancer was rare, hasn't spread and responds well to treatment and so far all has gone to plan (apart from the neuropathy)

    Thanks again and all the best for the future

    John