Anyone tips for coping with peripheral neuropathy?

I finished chemo 4th Dec and my problems with feet and hands are not improving. Different problem but my nails have come off too - very uncomfortable and they are only growing very slowly and look as though they might fall off again. Any tips?

I finished up with periperal neuropathy in my toes after Taxol.They are still numb after three and a half years but a lot better than they were and I dont get pains in them anymore! I didnt lose my nails though so I cant help you on that one!

Sorry to hear this, Sarcath. I, too, was hit by the problem - the soles of my feet are slightly numb, my fingertips feel grainy, my tongue is a bit numb in the centre, and my nails are horrible. The nails are slowly improving, but nothing else seems to be getting any better - last Taxotere was on 12th October. I’m afraid I don’t have any tips to cope with it other than to grit your teeth and get on with living life - not easy, I know!

Yvonne

Thanks for your replies - it helps to know there are others with the same problem - I don’t see it mentioned anywhere else on the forum.
Do either of you (or anyone else ) know if the problem affects the circulation as well as the nerve endings? I find it uncomfortable sitting still for long and wonder how wise ot would be to fly, especially long haul. Thinking of DVT.
Sarcath

Sarcath

I too have neoropathy but only in my feet; it started Jul 06 during Taxotere and peaked in Oct 06, one month aftert the end of chemotherapy. By then my feet were about 90% numb but I have never had pain or needles & pins, just numbness. In Oct 06 we went to South Africa for a few weeks and the flight really stiffened me up - I was last off the plane and couldn’t walk properly for a good 20 minutes. During the holiday I was just careful about walking on the flat everywhere and careful about balance and holding on to railings, so no scrambling over rocks on the beach and no walking on soft sand cos I looked like Bambi.

They’d improved a lot by March and were maybe down to 50% numbness but took a short dive after a general anaesthetic and recovered again after a few weeks so I was able to cycle to my post op checkup. Carried on cycling after that. We went to the US in May 07 and they were about 40% numb by then, last off the plane again!!! We went hiking and climbed over some VERY big rocks in the Canyonlands and Arches area wearing boots with ankle supports. More cycling when we came home and in June we did the London>Brighton bike ride and I did it in a Personal Best time. Shortly after that I met a retired teacher who’d finished treatment 4 years ago and she STILL had numb feet!!! Mentioned this to my oncologist who said it may never completely recede, oh well, there you go! I went to Crete and Cyprus in October and even those short flioghts affected my feet but they recover after a few days, sometimes the muscles are affected too, not just the nerves, and my feet are very prone to the cold - hot water bottle every night and microwaveable slippers at my desk during the day. Went to Oz for Christmas and was last off the plane again in Bangkok stopover and also last off for Oz. Cannot scrunch my toes up due to the effect on the muscles. Lost no nails except when having the Taxotere so nothing to do with the neuropathy.

So you can see it doesn’t affect my life much although I tend to wear flat shoes these days and am very careful up and down any sort of stairs/steps in case I don’t feel the edge underfoot. I already have my London>Brighton application and if I can find a “chum” plan to try London>Paris in August.

There are herbal products which might help but I haven’t tried anything. They say ginger and cinnamon are good for circulation and I saw something called Veintain (or similar) in last month’s Nature’s Best (Google) but I’d check before taking anything herbal in case of plant oestrogens.

Best wishes
D

P.S. Buy flight socks … I used the ones I’d been given in hospital!

Dahlia, you are an inspiration to me! All the stuff you have managed to do!

Everything you describe is oh so familiar right down to the stiff muscles in your feet - I have dropped arches as a result too. It doesn’t stop at my feet but affects my legs too. Even my sit-upon gets numb from sitting long! My hands are not as bad - just the fingers are a bit clumsy, not helped by the nails falling off - and they are taking so long to grow back!
The feet and legs are much worse at night and then better first thing. It seems to be getting worse rather than better!

The cold feet are what made me concerned about circulation and DVT especially since we like to fly long haul to visit family in Thailand and Australia. Do you take aspirin to guard against DVT? I must ask a doctor but I never seem to see one these days and I don’t have a lot of faith in GPs. I guess you just have to go for it. I always use flight socks on long haul.

I believe vitamin B6 (I think it was 6) is supposed to help but that too much can actually cause the problem.

Best Wishes
Sarcath

I still suffer from it now and again in my feet - four months after chemo finished - though it has slowly improved. Could barely walk by the end of chemo. Reflexology helped me. Also 100m alpha lipoic acid daily (one capsule) and B100 vitamin b complex (one daily). You can get these from holland and barrett. They are supposed to help repair the nerve endings (which the chemo will have damaged). The marsden suggested a drug if it continued to be bad - but it is prescribed to epileptics to prevent seizures (again connected to the nervous system). I told them to hang fire on this as I was loathe to take any more drugs than necessary and get more side-effects. They also suggested normal painkillers ie paracetomal. Mine used to be particularly bad at night and also still hurts if I am on my feet a long time.
Hope this helps
love and hugs
Vxxx

Sarcath, I was prescribed vitamin B6 during my second and third Taxotere cycles but it didn’t make a blind bit of difference - though I guess it may have stopped things getting worse than they already were.

Yvonne

As your nails start to grow massage almond oil into them daily - it’s about £1 from a chemist. It certainly helped me hang on to my nails until the new ones were nearly fully grown. My dog has lovely nails too - he ate half a jar!

Sharon

Thanks Sharon, I shall look out for the almond oil - I have just been applying Savlon to the exposed parts - most of my nails have gone and the new ones are only growing so slowly. I had never realised how much we rely on our nails - can’t even do up buttons, undo scarf ties etc!
Sarcath

I’m wondering if hot wax treatment would help with the stiffness etc in my toes. Has anyone tried it?

I am another pn sufferer.I finished taxotere in May last year and am left with numbness in fingers,toes and occasionally in bum if I sit too long.If I am tired or a bit ill the numbness moves up my legs but only temporarily.I’ve never had pain and it doesnt stop me doing anything although it is uncomfortable if I walk far[as if my shoes are tight].My onc says it usually goes in 3years but may be permanent.He says there is no treatment but if it is really bad try Bcomplex vit supplement.

I finished Taxotere on Nov 1st and still have numbness/tingling in the balls of my feet and toes. I did have it in my fingertips too, they were painful, but that has mostly gone now, although my fingers are not so dextrous as they used to be. My nails are heavily ridged and some have cracked crossways so I’ve had to cut them off to well below the fingertips.

I’m afraid I don’t have any advice on how to ease the periphal neuropathy, I was under the impression that it would clear up in a few months, so am disappointed to hear it may last years or be permanent! It’s bad enough having a permanently numb armpit, underarm and part of my back.

I too had problems walking for over a month after finishing chemo, my legs were just too painful…and it was a hands and knees job to get up stairs. I was really worried about having to travel by train and walk to hospital for my radiotherapy, but thankfully this did get better just in time!

I understand that the treatment is necessarily tough, but I hope that before long less barbaric ways of treating breast cancer are discovered!

xxx

I, too, have this curse, although I didn’t know what it was called before I read this thread. You ladies are all so well informed, so thank you.

I finished Taxotere early May 07 - well, it was abandoned after 5 of 6 because of the side effects. Feet and hands were very numb, up to knees and elbows, and I walked very, very slowly. I couldn’t write for a couple of months, nor could I type. It’s now at the pins and needles stage. I lost a couple of toenails and one fingernail, although the others all became loose but then firmed up again. Then in November, one big toenail dropped off and the other big toenail dropped off a few weeks ago!! And they weren’t even loose!

We flew long-haul from Heathrow to the Cayman Islands in October. Good flight, and I wore flight socks. But don’t believe BA when they confirm a wheelchair will be waiting for you at the airport - they lie. I ended up walking (God only knows how) from T1 to T4. A BA rep told us we hadn’t a cat in hell’s chance of making the connection in any case, and even with me walking, we made it with about 5 mins to spare.

So, Sarcath, to get back to you, I think things will improve but may not disappear altogether.

Good luck to us all xx