Peripheral Neuropathy

Mez_BCNA

Moderator moved @Chrisnsw comment to own dedicated discussion:

Chrisnsw Woden Member Posts: 3 New Member

12:04PM 

Hello everyone

How did you cope with Neuropathy, if it was present at all? Hugs to all! 

Mez_BCNA

Hi @Chrisnsw , while we wait for others to share their own experience - please find resources that may assist you in the meantime:

BCNA My Journey Article - Peripheral neuropathy (There is also a great podcast Ep 32 Peripheral Neuropathy)

Cancer Council - Understanding peripheral neuropathy

cranky_granny

@Chrisnsw There are a few of us that suffer varying degrees of peripheral neuropathy. 

The not so lovely side effect of treatment. Not everyone gets it. Mine improved over time but am still left with numb fingertips and fingernails are brittle. As for the feet toes still feel funny numb and part of 1 foot. Though originally I could hardly stand the way they felt. A bit like that strange feeling as if had been sitting on them and stood up to walk. 

That has settled to specific numb areas 

Most important thing I have to do is check my feet that I haven’t got any blisters or broken areas of skin. Also I try to make sure my shoes fit properly bit like when kids get fitted for shoes not tight and not too big. 

If your walking is affected its important to take care on uneven surfaces though i am naughty I’m supposed to where enclosed shoes 👞 but i like my thongs  🩴 and slip on sandals.  High heal shoes are a thing of the past as well.  There is some nice choices of shoes out there these days. I’ve taken a liking to sketchers
everything depends on your severity of neuropathy my Oncologist sent me to a physio to get some help with walking properly and if needed my GP was to organise a podiatrist. So far I have been lucky and I keep an eye on things. Activity is important keep the blood flowing. Oh and be careful trimming the nails only made that mistake once. 

Chrisnsw

Thank you for your response! It is greatly appreciated!!
while I’m undergoing treatment I have ice mittens and slippers. Did you have that? Xx

jennyss

Dear @Chrisnsw,
I believe  peripheral neuropathy is a condition where nerves are affected by chemo. You also mention having ice mittens and slippers while you are undergoing treatment. Sometimes this cold treatment is for another 'lovely' side-effect called Hand Foot Syndrome, or palmar-plantar erythrodysaesthesia. This is a reaction to some types of chemo which can @Mez_BCNA or another BCNA mentor may jump in with the best info about Hand Foot.

from jennyss in Western NSW

cranky_granny

@Chrisnsw. Im 7 years post chemotherapy i had never heard of ice etc during  my treatment didn’t see anyone doing it on my infusion days either. But things have changed  a lot in the time between. 

Tri

Hi @Chrisnsw
 I experienced peripheral neuropathy early on in treatment “sunburn” like redness all over the base of my feet and backs and palms of my hands. I was given a cortisone cream and my oncologist reduced the dose (I was having targeted immunotherapy and chemotherapy for Triple Positive breast cancer) by 10%. The skin eventually came away. 

@cranky_granny describes pins and needles  - which was the same for me plus sometimes quite strong zaps like electric shocks. At one point my feet looked very white almost blanched, and I wondered if it was due to poor circulation. 

Around 10 months into active treatment I started to have aches in my ankles and feet at night. Panadol osteo seemed to help me sleep and manage the pain.Lyrica targets nerve pain but I never tried it.
The slide on fluffy slippers were kindest - I avoided anything that made them hot.  

I also had numbness in my finger tips and redness on my hands - I wore latex gloves when cooking, and when the nails were loosening I had to cover them with bandaids to stop them catching until they fell off. 

The fingernails grew back slowly, once I stopped the taxane chemo. 

Interestingly the neuropathy has improved quite a bit; I think it’s yoga that helped. I had to pause yoga for a few weeks recently to recover from surgery and I noticed the stiffness and pain creeping up. 

I choose to wear slides in summer.  It’s winter here now, so I wear suede Birkenstock lace ups - they’re super comfortable instead of sneakers.  I can wear flat shoes like ballet slipper style and leather boots, as long as the leather is soft and the toe box doesn’t press down on my toe nails. 

I can do around 7-10,000 steps per day and not be too sore. 

I hope your neuropathy doesn’t go this far, it seems everyone is different. But there are some ladies on this forum who have been living with it for a while and they might jump in with their stories. 

I saw this article about a surgeon who overcame her neuropathy when my neuropathy was at its worst and it helped me feel encouraged and that if I took on some active rehabilitation I could look forward to some improvement.
https://amp.abc.net.au/article/102554760
Sending you lots of good vibes 🌻🌸🌼 for your treatment, healing and recovery! 

Kristen

For anyone in Sydney who experiencing neuropathy and completetd chemo between one and 6 mths ago who may be interested in helping with a trial in Randwick .

CIPN sucks. If you have it you know what it is.

Check out this and the many other trials for oncology and also healthy patients, recruiting at www.scientiaclinicalresearch.com.au

*Ask your oncologist do they know about Scientia.

Scientia Clinical Research

Link to list of all trials

https://www.scientiaclinicalresearch.com.au/patient.../

𝗡𝗲𝗿𝘃𝗲 𝗗𝗮𝗺𝗮𝗴𝗲 𝗦𝘁𝘂𝗱𝘆 (𝗢𝗫𝗧𝟯𝟮𝟴)

We are conducting a study to test a potential treatment for nerve damage following chemotherapy.

If you have induced nerve damage as a result of chemotherapy and have completed chemotherapy between one to six months ago and are aged 18 years of age or older, you may be interested in participating in our study.

Participation will involve 8 visits to our facility in Randwick, Sydney (plus remaining contact details as provided.)

You may wish to consider including that participants will be reimbursed for any reasonable transport, accommodation and meal expenses.

If you meet the criteria for this study and would like more information, please register via the website or call/email our Recruitment Team on 1800 727 87 or email Oxt328CIPN@scientiaclinicalresearch.com.au

#chemoinducedneuropathy

Link to the CIPN trial

https://www.scientiaclinicalresearch.com.au/nerve-damage-study/

Afraser

Hi @Chrisnsw

I have had peripheral neuropathy in my feet for over ten years. My feet aren’t numb, some parts are hypersensitive but sensations are - well, screwed! I frequently feel if I am walking on mud, or gravel or even ice. I can mentally overcome all that but not at speed. Happily I’ve never been a runner. 

I have never had problems with cuts or injury to my feet, as I say they are not numb. It’s annoying but manageable. I make sure I walk every day, it seems to help. Mainly it’s not painful, sometimes a bit uncomfortable. Unfortunately the only treatment seems to be pain relief. Best wishes. 

Chrisnsw

Thank you for your response, it is greatly appreciated.

I would like to know if anyone has taken or is taking Melatonin to help in the reduction of the side effects of paclitaxel, especially, peripheral neuropathy? Thank you!

Afraser

No I haven’t taken Melatonin. My oncologist’s nurse said Vitamin B helped some, and I think it helped me. Check with your oncologist or GP though. 

GorgyS

I have not used melatonin, but my oncologist stated that the only medication that might help is antidepressants. I said no, but I will keep an eye on the PN and see how it goes. It is tolerable, and it seems to be getting better. I will check with my GP as well.