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Nerve damage


Re: Nerve damage

I to had nerve damage after 3 fec and 3 taxotere. The soles of both feet,all my toes, my finger tips, both cheeks and my top lip were all numb. I ended up in a wheelchair after each taxotere for a while. I had my last lot of chemo 24th June and by the middle of Aug the feeling in my face and top lip came back. I then had a meeting with my onc he said it could take up to 2 years to heal! Well the breast care nurse had only given my 12 - 18 months to live so I wasn't best pleased! The onc did however give me the name of a food supplement to try, he did say it didn't work for everybody and didn't know how long it took to work, if it did work. I started taking it a week later and am still taking it today. My fingers are much better and my feet are better, I managed to get socks and shoes on for the first time last week... 2 sizes to big but at least much warmer than flip flops and smarter in work meeting! I can even have the cover on my feet in bed now. The name of the food supplement is Lecithin.

I hope it helps someone even just a little bit.

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Re: Nerve damage


This won't help a bit but it is true!

I ended up with numb feet after chemo and 3 years later they have been stable at around 50% numb. My onc never even asks about it anymore, it is just a given. If I run I'm like Bambi and I have been wearing flat shoes for the past 3 years as too nervous to wear anything else. Also have to hold on to hand rails going up and down stairs. Met a lady who has had this for 5 years ...

Some supplements that help with circulation might help, ginger, tumeric etc. Massage may help but I have found that just being busy takes my mind off it. Sometimes it creeps up my legs towards my knees - that really is weird, especially in aircraft, cabin pressure I suppose.

Fortunately my hands are okay and it's just my feet.

It is a KNOWN side effect but not too many people get it and so no one really warns you - the usual, don't treat us like adults in case we get to hear the truth about these cocktails!

If you are still having chemo then they should consider stopping or lowering the dose to minimize the damage.

I should think having this condition literally in your face would be very unusual and bl**dy hard to get used to, a bit like Bell's Palsy.

Maybe this needs specialist attention?

Re: Nerve damage

Hi Lisa, that sounds terrible and really frustrating. I'm really not sure this is the same thing, as there are different types of nerve damage. I was taken off docetaxel (last dose end of August) and not given the last planned dose. I had severe hand/foot syndrome and have peripheral nerve damage to my fingers and toes. Apparently it should go in 2 months or longer..., they stopped treatment to avoid permanent damage. I also have a strange nerve feeling (like tin foil on teeth fillings/fingernails on glass) mostly in my legs and feet, and I get this throughout the day. My arm is going through all sorts of funny sensations, but for me I think that it is a combination of the effects from chemo and 3 field rads.

One of the doctors that I saw in clinic didn't seem very interested in any of the s/e I reported, but said it is likely to stop soon. Decided to take a bit of control back, as like you feel irritated with ongoing s/e, so went to see a homeopath today. Have been given some homeopathic remedies and it was good to let off some steam with my homeopath - she was much more interested/supportive than the registrar!

Sorry, wish I had some answers/practical suggestions.

Take care.

Alice xxx

Nerve damage

Hi Just wondered if any one else had has nerve damage since chemo , I have it down side of face and think its affecting my bad arm (lympadima).
It feels like someone has tipped a hot drink down my face , its really getting me down at mo , have been given lyrica to treat it dont think its doing much , I can put up with chemo rads and the surgery its this getting me down !!!!!!
Any help or advise needed please .
Lisa xxx