Peripheral Neuropathy

[Jackiesten]

Just had 2nd chemo and believe I have this. Can hardly walk as feet sore and aching hands. Hope I can get some help as I want to get on with life and thought I was doing ok. Hope someone can encourage me! Thanks.

[Shire62]

Hiya Jackie ( same name)

I'm suffering too !! From being really flexible, to having to stop every few footsteps!! Have had my 3rd chemotherapy, seems worse this time around .. hope to have surgery soon , oncology have delayed my chemotherapy for a month , with a hope that a scan due on Monday will result in them going ahead with the debulking ( odd name , don't you think !).... speak soon x

[Jackiesten in reply to Shire62]

Just spoke to hospital who advised different pain medicine. Said will tweak chemo no.3 - I had successful debulking surgery on 30th Aug. so chemo is belt and braces. Wish you well and thanks for reply. J

[Katmal-UK]

Hi Jackie . Are you on Taxol as part of your chemo? Kathy xx

[Shire62 in reply to Katmal-UK]

Hi Katmal.. yes I am along with carbopletin .. ( think that's its name ! ) xx

[Jackiesten]

Yes, I am.

[Katmal-UK in reply to Jackiesten]

It'll be the Taxol thats causing the neuropathy. They stopped mine after the fourth dose as it was causing too many problems . Dont be alarmed if they do stop it the carbo can do the job on its own. To this day, 9 years past diagnosis I still have numb toes which get number the longer I walk so they were right to stop it. I wish you well, Kathy xx

[Jackiesten in reply to Katmal-UK]

Thanks

[Shellygirl]

My toes and balls of my feet feel numb... have finished chemo treatment about three weeks ago it does not seem to be improving ... feels worse at night and my feet feel cold to me but when I can manage to touch them (not easy these days) they are warm... thought about wearing socks in bed ??... I was hoping that I would return to normal after chemo but sadly not 😫😫

[Di16 in reply to Shellygirl]

I have long term neuropathy due to diabetes, affecting the balls of my feet, though it was made worse by chemo. My feet also feel cold at times, especially in the winter, &, like you, I find the skin feels warm when I touch it. Sometimes I do give in & wear socks in bed.

Di

[Shellygirl in reply to Di16]

I tried the socks for first time last night I did think it was slightly better... I was diagnosed with diabetes at the same time as oc so it was a bit of a shock at the time .... I have found that the diabetes has taken a back seat to oc as my focus to fight was concentrated there... so now I've just received Ned my recovery and dealing with diabetes is my new battle 👍🏻

[Di16 in reply to Shellygirl]

My diabetes was diagnosed a few months after being diagnosed with oc, & I think the oc was still the main focus in my mind, & I I don't think I have always taken it seriously enough, especially as I have had recurrences of oc. But I know I need to take it seriously, & I was really pleased in the summer when, after losing some weight & being quite strict with myself, I was able to reduce my diabetes medication. Di

[Shellygirl in reply to Di16]

Your story sounds so similar to mine.... but I need to shift some weight I lost two stone but pounds have crept back on ... I'm finding it so difficult to concentrate on dieting whilst feeling rubbish after chemo healthy has taken a back seat to what can I make that's quick 😫

[Jackiesten]

Let's hope, time will heal

[January-2016-UK]

My Taxol was reduced by 20% for 5th and 6th cycles because of this. I understand it's important to tell your team as the problems can become very severe. I had my last chemo in May this year and things are slowly improving I'm pleased to say. It's quite weird though because while the overall trajectory is improvement there are some relapsed days. The pains have gone and mostly so has the tingling and I'm left with numbness around the outer edges of my hands and feet.

[Choski]

You need to make sure your Oncologist knows about your pain as this can become permanent , my Onc reduced my Taxol after chemo 1 due to my neuropathy, reduced it again after chemo 2 and stopped it after chemo 4 when I continue used with Carbo only. I have no issues now with neuropathy but have seen some awful issues where people kept quiet. Not sure what type of chemo you are having but take care,

Clare xx

[Jackiesten]

Thanks and I am going to tell the oncologist. I certainly don't want long term problems. J

[Dollysmum]

Hi There,

My Taxol was stopped after number 5 because the nurse picked up that I was walking badly.

Carboplatin does 95% of the job anyway, so a reduction in Taxol shouldn't be too much of an issue. Do mention it.

My chemo finished in June and I still get pain - particularly in the feet.

In the meantime get yourself some epsom salts (Home Bargains are best value) and have a good soak in the bath or even just soak your feet in a bowl.

Debs xxx

[Jackiesten]

Thank you for this. Today, the pain in my feet and tingling in hands has lessened so I m going to have another quiet day in the hope that I can do some "normal" things next week. Yes, I have been using Epsom Salts in the bath too. Since I was given good news following the OC op. I am going to ask for a reduction in the Taxol. Sorry, you are still getting foot pain and I hope this will improve. J

[foss54]

Hi Jackie, I have PN in my feet, too, and a little in my hands. My local hospice community nurse suggested Gabapentin ( sp?), which apparently 'rebuilds' the sheath around the nerve endings that is destroyed by the Taxol. Certainly the pain is less, already. I've only recently started taking them, so we'll see how effective it is. Maybe you can mention it to your GP? Good luck with everything. Hugs, Eileen

[Barlow1951]

Hi Jackie,

I developed peripheral neuropathy in my feet after chemo 3 so my oncologist left the Taxol dose at 75% rather than increasing it as previously planned. My finger tips were slightly affected too and for a few weeks I had problems with writing but that is now OK.

However, the numbness in my feet has continued and my oncologist told me it would probably take up to a year after end of chemo for it to improve. It seems to be the same as when first diagnosed but has not got any worse. As others have already advised it is essential you tell your oncologist about these symptoms so they can tweak the chemo and avoid you having permanent nerve damage. A physio advised me to roll a tennis ball under the ball of each foot to stimulate the circulation and that has certainly helped. I was also advised by Suzuki on this site to get really comfy shoes and so bought some Skechers which are wonderful.

Hope the rest of your chemo goes well however they tweak it and that the neuropathy gets no worse.

Best wishes,

Barbara

[Jackiesten]

I wear Skechers most days as they are so comfy. Today my feet feel quite comfortable and just have little tingling in hands. It's a horrible long lasting side effect that I hope to avoid by my chemo being tweaked. Thank you Barbara for your comments and all good wishes. Jackie

[tutti]

I got peripheral neurothapy 16 years ago when I had taxol and although the pain went the numbness never has.My feet are very dry and I use cream and socks every night to combat the dryness,also have to shave off lumps of skin from the ends of toes.I thought that was bad enough but two years ago when I had surgery had to sleep on my back and very quickly developed the start of a heel ulcer which was incredibly painful and has taken ages to recover.Having just seen a programme about diabetes I realised that the chemo has given me the same feet problems of a diabetic so be very careful, examine your feet daily and protect them with cream, socks and sensible shoes .Also change position regularily.Best wishes,Viv.