Hello PB2121

I'm really sorry to hear that you've continued to experience problems with PN such a long time after treatment has finished and to say thank you for sharing your story. I'm sure that at some point in the future, your post will help others who may be experiencing the same problems. 

It does sound as if this phenomenon known as "coasting" has really impacted your life on a daily basis and I do hope that over the coming months that things settle and improve for you. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Jenn

Thanks for your reply, I'm glad to be able to add information for others, if you feel this could be of more use viewed on a different thread please feel free to move it.

Pete

Hi there, 

I hope you are well.

I have just come across your post, I am suffering with peripheral neuropathy since finishing chemotherapy in early January this year. It has got worse as times gone by  and I am really hope it goes away soon. 
I just wondered if this has now eased for you since your last post or are you still experiencing these symptoms. 
I have tried acupuncture, reflexology etc but none of this  therapies has helped as yet. Was there anything you done to help ease your symptoms?

I hope to hear from you. 

Hi JJP

Sorry to hear you have ongoing PN issues, I hope you see some improvement soon.

My symptoms have not subsided, luckily I have a new GP who has experience of PN and has now referred me to Neuroligy for investigation - during the covid period this was not available and the previous GP practice didn't seem to be interested in investigating.

I now have several issues that concern me, they may not all be PN based but now feel that the referal will give me peace of mind and maybe some exercises or lifestyle changes to help.

To be honest I was under the impression most symptoms would subside, I don't know your background but I completed a full 8 cycles and have since been told that was unusual as most people can't take it! I now feel that I may have stronger side effects because of this.

wishing you all the best

Pete

Hello Pete,

                l can mimic your treatment and symptoms precisely,and am six years on from the finish of xelox.Three years for the brain to stop constantly telling me my feet hurt,two years to stop tripping and falling over,now its mainly stumbles, one year for me to accept permanant nerve damage and that there is no treatment to turn that around.Six months to accept that l had done everything l possibly could have to give it my best shot at survival,and that there was no way of knowing the crossover point of cancer elimination or permanant damage.

Never being one to look for an easy gentle life,after paying such a high admission price into the life continuation club,l don't see me scaling back on that anytime soon,so yes l now carry an extra  weight on my shoulders,but it is a my constant companion as l continue with life. Looking at other potential outcomes.l will take this and keep moving on towards the next challenge., hope you continue to do the same,

                    David

Hi David

thanks for your comment, sorry to hear about the permanent nerve damage post chemo.

I feel mine will also be permanent but I'm hoping the Neurolgy appointment may hold some useful info. Ever the optimist!

good luck in the future

Pete

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?