Hi everyone
Has anyone been given any advice on dealing/coping with peripheral neuropathy? I had chemo in 2010 and started to get tingling and numbness in my feet and hands at the very end of the treatment. Since then I have been taking Letrozole. The sensations continued but over the past year the sensations in my feet in particular have become more intense and aching and I am more unsteady on my feet. I have told my oncologist about it but he just shrugs and implies I’ll just have to put up with it. I’ve been using a stick when I go out by myself because of my fear of stumbling.
Has anyone else been given any specific helpful advice?
Jan
Hi Jan,
Have suffered from this for a very long time, it’s very debilitating so you have my sympathies. Mine is not bc related but from back surgery, so on one side it’s permanent.
At the beginning of this year my other foot/ankle started tingling and burning, so have been for xrays and bone scan, all came back clear for bc but are showing arthritis, just waiting for a MRI to confirm.
I thought at first it maybe something to do with the tamoxifen, when I asked about this they said to me that it wasn’t but if I had been on Letrozole that would be a different story.
You could phone your Bcn or the helpline on here, if not I would visit the doc and explain things, I would do it as soon as possible, lots of hugs to you, hope this helps a little xx
HI there,
how really irritating of the Onc not to pay appropriate attention - my OH is an onc and when i developed PN after 4th chemo they took it very seriously, reduced my dose for number 5 and I never had number 6. The PN persisted for about a year on and off - it is meant to go away unless its very servere. I really strongly suggest you ask either your BCN or in fact, for their education as much as your own well being, ask for another appt with your onc, ask for an overview of the literature, is it linked to your drugs, will it get worse, should you consider shifting to other drug or other dosage, anything they can do for pain, impact on your life etc…
the response you got was simply NOT GOOD ENOUGH!
you deserve better,
best Nicola
HI there,
how really irritating of the Onc not to pay appropriate attention - my OH is an onc and when i developed PN after 4th chemo they took it very seriously, reduced my dose for number 5 and I never had number 6. The PN persisted for about a year on and off - it is meant to go away unless its very servere. I really strongly suggest you ask either your BCN or in fact, for their education as much as your own well being, ask for another appt with your onc, ask for an overview of the literature, is it linked to your drugs, will it get worse, should you consider shifting to other drug or other dosage, anything they can do for pain, impact on your life etc…
the response you got was simply NOT GOOD ENOUGH!
you deserve better,
best Nicola
Thank you very much for your help, Katy. I’m sorry you have the problems, too. Your reference to Letrazole is interesting. In my case it definitely started at the very end of chemo, before Letrozole. I had an allergic reaction at one stage and they checked for tingling etc before starting a diferent drug a bit later so I was very aware of it.
I was wondering about going to the GP but I seem to be there so much (I found a suspicious mole jsut before Christmas and it turned out to be melanoma, again possibly a result of the chemo ). I do go to the gym now and find it is easier to use the treadmill the faster I walk - the ‘speed’ keeps me balanced rather like riding a bike, I suppose! It gets me out of my ‘old woman’ mode for a short time. I do miss getting out walking as I did before bc.
Thanks again - and very best wishes to you.
Jan, like Nicola says would def get it investigated, somethings going on, phone today, take care xx
Hi Nicola and Katy
Thankyou both very much for your support. I’ll do as you suggest and take it further. I’ve also checked the info online and there seems to be more than I found 18 months ago.
Best wishes to you both
Jan
I am so glad this has been posted I thought I was going mad, I have been complaining about pain in my muscles/ joints at the last three appointments with my onc, the first time she told me to take evening primrose!! I wanted to scream and couldn’t get it through to her how painful my joints felt, after she took no notice the second time I rang my BCN and she said stop taking the Letrozole right away but keep on the herceptin and see how I go, well it got worse, then I realised that it wasnt joint or muscular but nerve pain, as it moved around sometimes it would effect my feet, knees and hips and later on in the day my shoulders arms or wrists would hurt, I would have to go to bewouldn’t was to uncomfortable to sit in a chair, but being in bed did not ease it and it was to painfull to even turn over, on my next vist I saw a different registrar and he said to take co codomol it was over the counter strength!!! Irangate my GP who new what it was right away and she put me on Gabapentin 100mg one at night for a week and increase to one in the morning and at night, it’s not been a dramatic change but at least I can dress myself now and aundone hobble to much when walking, but the night time is still as bad my hands swell and the pain in my knuckles and wrist,elbows is excruciating Ican’t even pull the duvet up the bed to cover my shoulders.
I did have a bad time on tax and had bad pain so much so I was admitted to hospital kept me in for 4 days I was on morphine and it. Still took 3 days to get the pain under control, just find it hard to believe that at the hospital they make me feel that I am the only one and they seemed surprised at my discomfort but yet do nothing, what can I now!!! I am 55 but feel liKev 85. At my next herceptin treatment I will see the doc again to diisucss what my treatment plan will be if it is the herceptin that’s making it worse I don’t know what to do.
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Hi. Not sure if this will be much use to you, but my Onc. suggested taking vitamin B complex for the PN. It did get better, altho not sure if it was going to resolve itself anyway, but I still take it, and symptoms are a lot better.
Hope this helps.
All the best,
Leigh
Hi. Not sure if this will be much use to you, but my Onc. suggested taking vitamin B complex for the PN. It did get better, altho not sure if it was going to resolve itself anyway, but I still take it, and symptoms are a lot better.
Hope this helps.
All the best,
Leigh
Hey Chico - hope you get some answers - you need to be very clear indeed about how the side effects are affecting your life - my Oh ( the Onc) says that because very many Docs are young people who have never been ill in their lives they just don;t get the impact of the pain or sideeffects or whatever …so ew just have to spell it out apparently…
best of luck
N
Well had app with onc on Tuesday he was not a bit helpful I told him about the pain that I am in and that my GP had prescribed gaberpentin and he just said well let your GP monitor it, also I had pain in my breast on my cancer side I told him that I was having my first mammo on the Thursday and was worried about it, he just said yes they will take care of that for you!! I just cried when I came out of his office, my BC nurse was very supportive and said to change onc, so still thinking about it, this nerve pain is really bad and that same day I was admitted to hospital for two days as i was unable to pee, they said that it might be be the nerve pain causing it as I only had a slight infection not enough to cause the mayhem that it did, why don’t they take us seriously when we say we are in pain. When I had my mammagram the radioligist was so nice and said by breast was very hot to touch and looking a little swollen she was so careful not to hurt me, and put a report with my mammo so it will be flagged and looked at in more detail, so just have to wait a few weeks for results, at least some of my team are on the same page thank god.