Chemotherapy Neuropathy

• Thank you so much for your help.Will take your advice especially about the ibuprofen. Have a few kitchen items and use a walking stick. Do exerises every morning and try and walk as much as possible. As you can guess l havent accepted what is happening to me but l must as l am still alive. I will get there lm sure. Got my scans in January so need to focus on them. Thanks again. 

Hello - sorry I’m late to this thread - I’ve been reading it but wanted to wait a bit to see what you all said. I’ve also found the oncologists not particularly helpful when it comes to side effect treatment - particularly PN. One said to me “you’ll be feeling pain all over” which I felt was a bit dismissive of the PN type pain I was in. I’m 7 weeks pfc and 3 weeks post mastectomy - I have pain in my arm and leg and slight numbness pins and needles in my hand and foot - both left side where I had the tumour. I have slight pins and needles on both right hand and foot. I feel lucky because it’s in the mild category but it’s still there - if I don’t move all day or get cold it’s worse. Was thinking about asking for a physio referral but suspect it hasn’t been long enough since final chemo and I’m probably not bad enough. The BCN was kind but not really helpful either. Just said it’s common. Not sure that makes me feel any better! 

 Littlecaf ....I am sorry to read you have some neuropathy problems post chemo and no one seems to be sympathetic or helpful when you discuss it. Unfortunately oncologists are not very good at admitting the taxotere can cause these problems although in some hospitals they have reduced doses or give them weekly to allow the reactions to be minimal.  

I think , from the symptoms you have described, you may find in a month or two they do begin to improve. This does happen. If it does continue for longer .....say 6 months....then you will need to make sure you discuss it again with your doctors. There are treatments which can't cure the nerves if they have been destroyed but will alleviate. However, in many cases the damage was not permanent and things do gradually improve.

Unfortunately the reaction I had was severe and the damage permanent. However, I was referred to neurology and have been treated by a neurologist and also had surgery for the sciatic nerve by a neuro surgeon. Both specialists, plus subsequent physiotherapists, told me that they see a large  number of patients whose problems began through chemo.

For everyone else who has contributed on this subject.....I have read the posts on the previous two pages......the many symptoms listed were all things I too experienced . In addition to the burning sensation, the skin on my feet peeled away in sheets. The pain can still keep me awake. I get cramp. My legs can feel numb from the knee down. I drop things where my fingers don't always work. 

Treatment has involved 'trial and error' for pain management and increasing doses of Gabapentine (1000mg per day) but for the moment the pain is manageable. I have a back up prescription of cocodamol but I haven't taken them yet. Regular blood tests monitor B12, B6, B1 and zinc for which I take supplements. Exercise definitely helps with the numbness. The cramp unfortunately can occur at anytime. I have an appointment at least every six months, sometimes three monthly depending on test results. I have had electro testing for both feet and hands so I know exactly where the permanent damage is. I had a decompression operation for the sciatic nerve at L4/L5.

If you haven't been referred to neurology, I suggest you ask your GP. Oncology may still be reluctant to help but it is important that you get an accurate assessment of your situation so that your treatment is specific for you. 

I hope you all manage to control your symptoms. Sadly in severe cases the neuropathy won't go away but you can live without it causing too much interruption to the things you want to do once you have a symptom control package to suit your case. 

Take care all. Love Karen

Thank you for your super useful reply  - I wish you all the best on managing this condition. 

Hello Lallylo, I feel like we are the forgotten. When I had cancer it caused me no pain and now I am cancer free and left in indescribable pain. I cannot believe that we have nowhere to go. I have exhausted all the departments at Charing Cross Hospital. I need second opinions and HELP. But I have nowhere else to go. I would like some answers. I need constant care and monitoring. My pain clinic want to pump me with drugs, that have little effect. My symptoms are getting worse and spreading. It's a tragedy that we have been left like this. There should be a dedicated after care clinics for post chemotherapy/surgery pain. It is clear that this is a problem. From my research 30% of people have permanent neuropathy pain. I am  there with you and I hope this message gives you some comfort in knowing you are not alone. Jan

Very sorry to hear that you are suffering with neuropathy on top of everything else. Have you tried acupuncture? I have been told that this can help.

Dear Jan

• Thank you for your reply. I totally agree with all you say and unfortunately am unable to give any answers but do get comfort in knowing l am not alone. Just wish there was more support. As already said l am living with bone cancer which is stable and causes no pain but consequence of treatment has ruined my quality of life. I had chemo 13 years ago and personally l think the immunatherapy treatment l continue to have every three weeks is making it worst. The oncologists do not agree with this but something is causing my symptoms to decline. But of course l cannot stop the treatment as what would be the alternative. 

Really need to come to terms with my condition as know there are people worse off but find it so hard. Did have therapy which helped at the time but since then my mobility got a lot worse. 

Hello, Yes I have had for over two years regularly. It's the only thing that calms my nervous system. It doesn't stop the pain but puts my body in a more relaxed state for a few days. Then things start again.

Dear Lallylo, I am so sorry that you are having to deal with so much. I hope that it is bearable so that you get through it. It must be so tough. And of course not wanting to stop the therapy. I guess you do immunotherapy because you can't do chemo now. I really hope you find relief in-between treatments. It is even more upsetting knowing that you still cannot find any support and still going through active treatment. 

Acupuncture really helped my neuropathy, but I only had it in my hands.