advice on peripheral neurapthy

I can't imagine the pain you are in; I had very mild neuropathy in my feet by the time I was due to get my very last Taxol, so we skipped it altogether and thankfully it seemed to remedy itself. I remember hearing complex Vitamin B was allegedly good to help the symptoms but cannot attest to it myself.

I came across an article that might be of interest to you and attaching the link below; some of it in my own opinion, wouldn't pay too much attention to but I hope that you get relief soon.

Best of luck x

http://www.naturalnews.com/029779_perip ... edies.html

Hi

Remember that pain I couldn't even stand when I woke up. After surgery it got very bad eased off after a couple of weeks but came back after radio. Finished radio at the end of February and it lasted about two months has eased off a lot only get it sometimes now just when I am first up but it disappears completely fairly quickly. Know it's not ideal but hope it helps to know it wore off in my case.

Nurse suggested walnuts and orange juice did take loads don't know whether it helped or not!

Hope it eases off! Best of luck.

Thank you ladies

Nice to know it will settle but just wish it would now.Wasnt aware it could get worse after surgery so bit of a nasty surprise.The two main scars from surgery are healing really well new boob looks great,but surgery ended up being 14 hrs instead of 6,i have 3 extra incisions i wasnt expecting and managed to get a big blister on back from lying on table for so long!!!I am now so terrified of ever having to be knocked out again!!!!

I know it will all take a while to get used to but i wonder if i will ever feel normal again.

xx

Dear Wilmaone,

I am really sorry to read about the difficult time you are having after your breast reconstruction. I hope that you are feeling a little better. After such a lengthy surgery it will take you a number of weeks before you will even begin to feel stronger again; not only have you had long surgery but you have also completed chemotherapy too. Your body will need lots of time to heal after all this treatment.

Peripheral neuropathy is a common side-effect often associated with certain chemotherapy drugs given in the treatment of breast cancer, which can be distressing depending upon how uncomfortable or debilitating it is.

At this point I would suggest that you make contact with your oncology team and let them know how much this is troubling you so that you can be reassessed. As well as certain painkillers there are other types of medications which can be used alongside the regular pain killers which may also be helpful and give you some relief.

Here is a link to our [url=http://www.cancer.ie/sites/default/files/content-attachments/peripheral… on peripheral neuropathy (PDF)[/url:2slhvb4b] which has additional information and practical tips which you might find helpful.

Finall,y you could also call us on our FreeFone number 1800 200 700 if you wished to speak to a cancer nurse specialist. Our lines are open from 9-7pm (Mon-Thurs) and 9-5pm (Fri) and we would be happy to try and support you further around your recovery.

I hope that this is helpful.

Kind regards,
Cancer Information Nurse

Hello Wilmaone,

When I read your message back in May, I was plagued by constant pain in my hands and feet when standing or resting. Burning sensations, electric shocks and feelings of sharp objects sticking into me.

I didn't reply to your post as I just didn't know what to write without being very negative.

Everynight I'd spend hours trying to get to sleep. Lonely nights. At the end of my Taxol treatment I had just mild neuropathy, then out of the blue, four weeks after the end of the treatment, my eye lashes fell out and the pain in my hands and feet escalated drastically.

I was prescribed Lyrica. This removes the pain but does not repair the damage done by the chemo. I was very concerned about the side effects, especially the dizziness, as I am pretty unstable for a few minutes when I stand up. I was terrified of having a bad fall and ending up worse off. I didn't take the Lyrica.

Here are some of the things I found to be helpful:

* Having a hot shower just before going to bed ... Zzzz at last!

* Swimming, especially in cold water

* Moving my feet before standing up

* Walking - I try to walk 5 km every day

A few months ago I was terrified that the pain would never go away but I am happy to say that it has been lessening gradually for the past month. Still a long way to go, but I feel much more positive at this point.

I hope your recovery is going well too.

Hugs

Kathleen

Thanks ladies

Am happy to say the pain has eased a good bit now.Still sore and have no feeling in 2 toes and part of feet but can manage,as long as i remember not to stand on side with no feeling or i fall over!!!!
Fingers better too although i still drop lots.Unfortunately the emotional side has really caught up with me and im really struggling with it.Going away next week so hopefully the rest will put a smile back n my face.

Good thoughts to all
xx

Hi Wilmoane
I am glad to here that the feeling is starting to return. I have it in my arm from my elbow down to my hand. I drop things all the time and sometimes my foot decides to go funny and I fall over. A bit embarrasing as I am sure people think I am drunk.... if only!!
I hope the holiday helps to clear the mist for you and you feel much better.

Sinéad x

Hi,

Bringing this up to the top of the list with an update.

I finished Taxol in March 2012 and posted in August about some things that had helped me to cope when my peripheral neuropathy was at its most acute.

At the time it intensified in April 2012, I was told that I could expect it to get slowly better over a period of 2 years. Nerves can take up to 2 years to recover from injury. However, any residual pain after two years would most likely be permanent.

I am happy to say that the pain, the tingling, the electric shocks, the instability and the feeling of walking on stones has lessened very considerably and with almost five months left of my two years, at this rate of slow but steady improvement I should not have too much permanent damage.

What is left at this point?

° Stiffness in my feet after resting that make me initially unstable when I stand. If I wiggle my feet and press them down on the floor a few times before standing I can reduce the instability.

° Shooting pains in my feet when resting or standing and sometimes when walking but they are less intense, less frequent and only last a minute or two in general.

° Early night pains that used to last for several hours every single night only happen maybe once every 3 or 4 weeks now and last for about 2 hours.

° Very little pain in my hands. My fingers all do what I want them to do now - for a long time I had two fingers that would not follow the others in a movement. The feeling has returned and nothing feels like sandpaper any more. I don't drop things any more than I used to.

So definitely I have made a lot of progress and I am hopeful that in a few month's time it will have further improved. I do think that walking helps. I am much worse on the days that I don't walk.

I hope this helps anyone who is worried about long term neuropathy.

(By the way I was advised to stimulate the nerves by being as active as possible.)

Best wishes to all

Kath

I found this link giving exercises to do for peripheral neuropathy. I thought I would share it with you ladies as these exercises are a pretty good summary of what my physiotherapist told me to do when my hands and feet were bad.

http://fr.slideshare.net/DanaFarber/how ... neuropathy

Best to all

Kath