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Living with and beyond cancer

Nerve damage

Nerve damage caused by cancer drugs

Nerve damage can occur in people with cancer as a side effect of certain chemotherapy drugs. The most common type of nerve damage caused by chemotherapy is to the peripheral nerves that carry signals from the body to the brain. This ‘peripheral neuropathy’ occurs in some people who are prescribed certain anti-cancer drugs, such as the vinca alkaloids (including vincristine (Oncovin)), the platinum based drugs (cisplatin, oxaliplatin (Eloxatin) and carboplatin (Paraplatin)), and the taxanes (docetaxel (Taxotere) and paclitaxel (Taxol)). It is most likely to affect the hands, feet and lower legs. People we spoke to used different terms to describe the sensations they still experienced in these areas, many years after their treatment had finished. Some said it was like a tingling, some a numbness, others a burning sensation or a feeling of coldness.
 

Five years after having platinum based chemotherapy for testicular cancer he still experiences a...

Five years after having platinum based chemotherapy for testicular cancer he still experiences a...

Age at interview: 32
Sex: Male
Age at diagnosis: 27
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But I do have a numbness in my fingers, which I'm going to be left with possibly for forever. Again, it's not subsided to a great, I mean it has subsided slightly but in, particularly in the winter, in the cold weather the ends of my fingers will almost go blue, it's just damage caused by a drug called cisplatin, which is part of the chemotherapy regimen that is given to you, which damages the nerves in your body. Now it was just, it's one of the side effects that you have but it's just basically pins and needles in your fingers during cold weather, which is manageable.

Once nerve damage has occurred it cannot be reversed, but stopping the treatment that is causing the damage can prevent further damage being done. Some people may find the symptoms less troubling over time as they adapt to them.
 

After having chemotherapy for ovarian cancer her toes still feel as if they are in cold water or...

After having chemotherapy for ovarian cancer her toes still feel as if they are in cold water or...

Age at interview: 71
Sex: Female
Age at diagnosis: 66
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But the other effect that I have had with Taxol has been a weird feeling in my toes. It’s certainly, it’s not a pain of any kind, it feels sometimes as if my toes are in cold water and other times as if my toes are slightly swollen, but it’s not difficult to live with at all and in fact half the time I’m just not thinking about it. The one problem I had was trying to buy some new shoes... as I’ve already got very wide feet, this extra strange feeling in my toes, it was hard to decide whether the shoes were fitting correctly.
 
And are those kind of feelings still hanging about even though you finished your treatment ages ago?
 
Yes. Yes, I think it is expected really that this will be, certain nerve endings I suppose have been in some way affected. My feet are slightly better, I was walking in a very lop-sided way and that was one of the reasons I was allowed off my last Taxol treatment, and it was explained that possibly the most good is done in the first three or four, and the last two are given as a top-up just in case, so and as my result was good I don’t feel I’ve affected my chances in any way by not having that last treatment.
People having treatments that can cause nerve damage should be told that this is a possible outcome and be regularly monitored to detect problems early. However, some people we spoke to didn’t recall being warned in advance that nerve damage could occur or persist after treatment finishes.
 

Marion says she wasn’t told that the burning sensation in her hands and feet caused by...

Marion says she wasn’t told that the burning sensation in her hands and feet caused by...

Age at interview: 73
Sex: Female
Age at diagnosis: 66
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Anyway I had chemotherapy, at which I was told I was to have twelve sessions and I had ten in all because I had a lot of burning sensations in my feet and in my hands and they thought after ten I should stop it because they were really red. And since then I’ve had, not so much burning in my hands, but my feet have been terrible. And it’s seems to vary from, I can go two days and then it comes back and I have it for the whole day. Another time I might go three days or four but no more. Someone gave me, a pharmacist gave me some cream to see if that would help but it hasn’t really helped at all. But I don’t know whether if I have it sort of a gap of a day or two and then I get it so quickly back again, whether it may be because I’m tense or rushing around or whatever. But, on the whole, I get it every third or fourth day.
 
So when you were having the chemotherapy, can you just describe a bit more about what the redness was like and what it felt like and your…?
 
Well, it was almost like you’d got sore chafed hands from winter and you, they were sort of cracking and that. I had to put lots of cream on them and also on my feet, and my feet I found very difficult to walk with. I mean though I get the burning sensation now, I can walk with my feet, but my feet were so red and hot that it seemed, you know, I did find it difficult to walk with them. And it’s difficult to explain it really but other people that I know that have had chemotherapy don’t seemed to have suffered with the redness of the feet or the soreness, or if they had it during their treatment, their treatment was stopped for a month or so and then they went back to having it, whereas mine continued on once a fortnight, I used to go to the hospital and have it intravenously put in.
 
And what did they say about that at the time? Did they say that this was an expected side effect and…?
 
Yes, I was told it was a side effect of it but they didn’t say you would have it persisting when you’d finished your chemotherapy. But I think they realised that it was very painful, and after ten, instead of having the twelve sessions, they stopped it because they stopped another man. He’d stopped at eight so he obviously was experiencing the same thing as I did.
 
And nowadays you said that you don’t go more than three or four days…
 
No.
 
…before having it, and how, when does it happen? Does it happen during the day or when you’re walking about or…?
 
Sometimes I can get up and get this sort of, I could go an hour or two and then suddenly I can feel sort of tingling in my feet, and it even goes up into my legs slightly, and I feel that this is going to be a day when I’m going to get it again. And another day I can almost get up with it, but once I’ve got it I never get rid of it until I go to bed and wake up the next morning. And then occasionally, when I wake up the next morning I can feel it a little bit but not as bad as I’ve had the day before. Like yesterday I had a dreadful day of it. In fact, all I kept doing was taking my shoes off and walking round on the cold lino or whatever.
 
And does it keep you up or does it restrict you from walking around, or is it just uncomfortable?
 
It’s very uncomfortable. I’m not one that gives in, so consequently I don’t just sort of sit. I did actually last night, it was so bad I did sit with my feet up and I thought, “Now, I wonder if that will help.” But it didn’t help at all.
 
Peripheral neuropathy can also affect the ears, causing hearing loss or balance difficulties. A woman who had cisplatin chemotherapy for ovarian cancer said she hadn’t been warned about possible hearing loss but noticed it after the first treatment. She can no longer hear birdsong or alarm signals. A woman who had chemotherapy for lymphoma said, “My sense of balance isn’t good; I wouldn’t care to ride a bicycle again, and I walk like a drunk even when sober”. 
 

Six years after chemotherapy for testicular cancer he still has tingly toes after being on his...

Six years after chemotherapy for testicular cancer he still has tingly toes after being on his...

Age at interview: 40
Sex: Male
Age at diagnosis: 34
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The other thing was that the nerve endings of my toes and my fingers and my ears went dead. But this was obviously due to the high dose of chemotherapy that I had, because it obviously kills all your nerve endings. My fingers have come back, I can feel them. My toes are still a bit tingly, and my ears are, I'm a little bit deaf in my ears but not excessively, you know.
 
Do you feel the tingling in your toes all the time?
 
Not all the time. If I've done a lot of walking or standing on my feet, then I can feel it and they start throbbing, but no not all the time, they're alright now. I think it's just if I do maybe too much my ankles swell up and things like that.
 
And how can you tell that your hearing has been affected, is it obvious?
 
It's fine on a one-to-one like this but if you're in a pub or a noisy environment it's very difficult for me to pick out conversation. It's just like a noise, just one noise. But I've been to the ear hospital and that and they've given me tests and…
 
Did they say that might improve or will it always be like this?
 
It could do but they're not sure. It's obviously to do with the nerve endings, but again they can rejuvenate. It's a bit like the liver actually in a male. Because I had the tumour in my liver, in a male the liver will rejuvenate 100% but not in a female for some reason, I don't know why, no.
 
Were you aware before you had the chemotherapy that these things might happen?
 
Not really, no. I think they did say that there are obviously side effects that can occur. But I wasn't really, you know, that bothered about the side effects, I just wanted to get better.
 
Get better.
 
Yeah. 
 

Each chemotherapy treatment he had for testicular cancer seemed to make his hearing worse; he has...

Each chemotherapy treatment he had for testicular cancer seemed to make his hearing worse; he has...

Age at interview: 41
Sex: Male
Age at diagnosis: 35
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Another side effect was my hearing went as well for a little while, I kept, my hearing wasn't very good. I went for a hearing test and everything and every single time I went for the chemo it seemed to be getting worse. In the end, well I've still got it now, I've still got tinnitus, which is like a ringing in the ears. Every single chemo session I went for it seemed to be getting worse. Now when I told the doctors and that lot they did change part of the chemotherapy, one of the drugs they give you, and it seemed to stop getting worse then. But I have actually got tinnitus now, which is, like I say, ringing in the ears, which was from the side effects from the cancer treatment.
 
Has the hearing improved?
 
No, not really, no, it's about the same level as it was and, like, I've got this ringing in my head all the time but…
 
Oh dear that must be annoying.
 
I've got used to it now, it's like a unnecessary friend really is how I can explain it.
 
But you actually lost some of the hearing?
 
My hearing wasn't good. I actually lost, because I went for a hearing test and they put you in the same, in a booth with this machine, put your ears on, and it's very weird in, like, a soundproof booth, can't hear a word, a single sound in there, and then they start giving you buzzing through a machine and you have to switch it off. And through that I found that my hearing has dropped a few degrees really now.

 

Nerve damage caused by cancer surgery

Nerve damage can also occasionally occur as a complication of surgery. A woman who had a hysterectomy for cervical cancer still has numbness around the scar and down her right leg five years later. Sixteen years after having a testicle removed because of cancer one man still has a bit of numbness near the operation site. A woman who had surgery for non-Hodgkin’s lymphoma experiences debilitating nerve damage.
 

She had a lymphoma surgically removed from her chest; the operation damaged the nerves to her arm...

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She had a lymphoma surgically removed from her chest; the operation damaged the nerves to her arm...

Age at interview: 66
Sex: Female
Age at diagnosis: 61
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And the operation also affected my arm and now my muscle seems to be getting numbness, pain, and some nerves got damaged here. But gradually it’s getting worse. 
 
And that operation left you with some nerve damage you said in your arm?
 
Mm, mm.
 
And have they said anything about sorting that out?
 
It can’t be sorted, they can’t do anything about it. Once the nerves are damaged they can’t do anything about it. To start with it was numbness and the pain, but now they said the muscle is decaying as well. You can see this depression here.
 
And it’s difficult, I don’t have the same strength in this hand, and at night my hand goes numb and painful.
 
So has that stopped you doing anything?
 
Yes, I can’t lift things, heavy things or get things out of the fridge or oven, that’s difficult for me. 
 
So you rely on your family and friends to help?
 
Yes.

Last reviewed October 2018.

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