peripheral neuropathy post chemo

Hi Vicky

I’m not quite the same as you re neuropathy. Mine mainly came on during chemo, had Paclitaxel reduced for rounds 3 and 4. Saying that I have had pain above ankles since finishing, mainly at night…like you once I’m up and about tends to be OK. I had numbness in tops of fingers and thumbs, which is why the Paclitaxel was reduced. 

i finished my chemo 9 weeks ago  and over the last week, my fingers and thumbs have felt better in terms of not numb, but getting sense of touch back, they still feel weird though.

im also interested in what others say, as when I mentioned to CNS, I just got told it would take time and early days.

Hi vicki

I am sorry to hear of your neuropathy symptoms. They are very common with certain chemos. Paclitaxel is often the issue. 

Mine started from the first cycle and progressed with each cycle despite reductions in doses. 

Mine started in fingers and toes and is now lower arms (particularly fingers,hands and wrists) and lower legs. 

Mine seemed to continue to develop post chemo during the 5 weeks where I had the radiotherapy. Its hard to remember exactly what happened and when. 

I am now 3 years post treatment and I would say that it progressed and then stabilised to what it is now. 

I was prescribed amitriptyline for the pain but do not currently take it as to be honest didn't help much and doesn't do anything for the other symptoms. What helped me is to keep moving, walking regularly and I also had a physio assessment that gave me some exercises- although tI was told that these can not heal the neuropathy they encourage blood flow to the areas and they help stabilise everything else. 

For some people the neuropathy can improve with time. I hope that it does for you. 

Mine was monitored and discussed during my check ups for the first 2 years post treatment but it was just seen as a side effect of the treatment- they were sympathetic but could not offer much in the terms of treatment. 

Jane

Hi Waidh thanks for the reply.

I had Paclitaxel too, but didn't  have a does reduction  during  treatment as the symptoms  were manageable. Just seem to be worse now. Im hoping  with time it will subside  as again my cns nurse said it can take upto a year to improve fingers crossed  its not that long.

Best wishes  Vicki

Thanks for the reply.  I really hope it improves  and im not left permanently time will tell. 

Best wishes vicki

Hi Vicki.O 

I too had paclitaxel, 6 cycles, which finished on 8th May, I had neuropathy in the tips of my fingers and in my toes with a short bout in my lower legs. My fingers seem to be fine now but still getting it in my toes, more noticeable at night.  My oncologist did say it could take some time to settle. I am diabetic and have annual foot checks so it will be interesting when I have the next one if I'm still having issues. 

I hope yours settles down. 

H 

Hi All

Just wondering if anyone is still feeling numb feet over 12 months since finishing treatment. I also lose my balance not being able to feel my feet. They feel like lumps of dough. I can drive but walking is difficult..

I also suffered a broken vertebrae while having radiotherapy and it is thought that the radiotherapy weakened my bones.

Due to my back issues and numb feet i struggle to walk so i am starting swimming to try to get fit. At 74 years old its difficult.

Has anyone got any tips to help with it. My oncologist said it is quite common.

Hi Missy B

I am sorry to hear that you are still having neuropathy symptoms after a year. 

I also have peripheral neuropathy. Mine is numbness, pain, cramps etc and is lower legs and hands. 

I had a physiotherapy assessment and was given some exercises to do at home. Whilst they do not treat the nerve damage they can help stabilise muscles etc so can help with walking. I find mine feels worse if I do not keep walking but it is a fine line between keeping active and doing too much. If I do too much then I get shooting pains and a heaviness. 

I was prescribed amitriptyline for the pain but do not find it that effective. 

Jane

Thanks Jane

I think your problem is worse than mine as I am not in pain but I think you have the right attitude. 

I feel guilty moaning about it because I had good news last week and my cancer is behaving itself according to my oncologist.

I have joined a gym to try and help and although its not a proper gym its motorised excercise machines it might help.

Its nice to compare notes so thanks again for your reply

Mine started as pins and needles after first chemo. I also had numbness. Later on I developed the pain and strange sensations. I would say that what I had at 12 months post chemo is what I have now. I haven't found any creams/medication that makes a difference. But the physio exercises and keeping active have. One thing to be aware of is to have supportive shoes. 

The gym sounds a good plan. 

You are not moaning and should not feel guilty- it is frustrating to have side effects from the treatments. I felt angry/frustrated for some time. 

Glad that you had some good news last week.