Forum Discussion
Peripheral Neuropathy
Hi All,
I have started this new thread because I am worried.
I am 2 months out of chemo (Dose Dense 4xAC 4xPaclitaxol) and the neuropathy in my feet is getting worse. From the balls of my feet to my toes - feel like blocks of wood!
When I sleep, I sleep o n my side with my hands under the pillow. Recently (in the last week) I have been waking up wth pins and needles in my hands and fingers. When I put my hands down by my sides it goes away, but I naturally put my hands back there again and yep, more pins and needles. Do not notice anything during the day in my hands.
By the end of the day my feet are REALLY sore, red, swollen etc. All my oncologist said (on last meeting a few weeks back) was to moisturise. I haven't been doing it twice a day like she said to, so I will increase that, but any other tips? Should I be worried that it seems to be getting worse rather than better?
I have started this new thread because I am worried.
I am 2 months out of chemo (Dose Dense 4xAC 4xPaclitaxol) and the neuropathy in my feet is getting worse. From the balls of my feet to my toes - feel like blocks of wood!
When I sleep, I sleep o n my side with my hands under the pillow. Recently (in the last week) I have been waking up wth pins and needles in my hands and fingers. When I put my hands down by my sides it goes away, but I naturally put my hands back there again and yep, more pins and needles. Do not notice anything during the day in my hands.
By the end of the day my feet are REALLY sore, red, swollen etc. All my oncologist said (on last meeting a few weeks back) was to moisturise. I haven't been doing it twice a day like she said to, so I will increase that, but any other tips? Should I be worried that it seems to be getting worse rather than better?
160 Replies
- @JJ70 I had dose dense AC x 4 and Taxol x 12 from June to November last year and my fingers and toes are fucked. They are numb and I drop things all the time but they also hurt if I open a jar or a car door and you can forget about using secateurs for even clipping a daisy. My feet are padded with sheepskin and although my toes are numb it's my hands that remain unusable for anything strenuous or repetitive.
- @Sister bit of a pain in the ass sure the chemo started it off as the timing was just a little coincidental. Stopped taking the fluid tablets and I have lost a lot of fluid but still retaining some fluid so live in hope the arm will still subside. Seeing my physio again in a couple of weeks. At least it’s only noticeable by me unless I point it out to someone.
- Not so good @"Kiwi Angel" and @JJ70.
- Feet may be getting better but more convinced I have some lymphodema all down the side where I had the node removal. So much retained fluid fine but still slightly bigger on that side. Still think chemo started it as it happened after my first session - whether it eventually subsided in the future of not who knows!! :(
- @minimum67 keep letting us know how it goes. Would love to read some updates. I am hoping it works for you. My feet are no better, in fact I think they are worse.
- I think my feet are actually slowly getting better - just really noticed last night they didn't feel as tingly!!
- Hi @minimum67 -glad to hear you are going well with your ice experiments! Hope it keeps working for you. All the best Moirac
- Just started Alpha Lipoic and have been taking Vit B for awhile now. No improvement yet withVit B. As the weather has got colder my PN has gotten worse. LEFT foot the worst. Hands only get tingly at night when I put them anywhere above my heart eg: under the pillow. Weird...this symptom started about a month ago. 3 months post chemo now Dose Dense 4xAC/4×Paclitaxel
- I think vitamin b6 and alpha linoic acid were the supplements suggested for PN and the latter someone on here said was very helpful.Maybe do a search and more details will show up but please check with your oncologist before starting especially if undergoing active treatment for breast cancer.There is quite a bit about both of them on the Herbs app / MSKCC site if you feel like a read.
- Hi,I thought I should give an update On how I m trying to prevent Peripheral neuropathy.Ive just had my 3 of 4thdose dense Paclitaxel and Im lucky that my centre was able to obtain 3 elastogel gloves ( which if you have time I think you can get on ebay ).I bought extra gel packs to freeze to slip in front and back of gloves so I dont have to change them as often as my treatment last for 3 hours. They did not have the socks so I bought cheap oversize slipper booties and but iced gel packs in front and back of these booties .I needed to cut the front to fit the top ice pack in and then from Priceline chemists found ice gel packs that came with a wrap and used that to wrap on the slippers.I was fortunate to have a friend there the whole time and she helped the nurses change the packs.We aimed for every 40 minutes or so.As Im having cold cap for my hair which has worked well and requires an extra hour before and after the infusion I did the same with the ice packs. I get panadol and a benzodiazepine called Loratidine so it is not that uncomfortable.I ended up wearing 2 pairs of thin socks to protect my feet ( one was 2 painful ) and they had special glove inserts for me to wear. I have even fallen asleep for some of the treatment!
So far first treatment no symptoms. 2 treatment ( which is eq to 6 cycles of weekly Paclitaxel ) i had very mild tingling in 3 right toe at end of the day for a couple of days in the first week. My right thumb at end of day for about 5 days had mild tingling .THe NUM yesterday realised the glove which is like a mitten if you put the thumb in that section isnt iced so Yesterday I just kept my thumb close to my other fingers.So far this morning nothing. I have also been taking b6 and magnesium. So I am pleased how it is going.
