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'm really affected by how good the shoe last is now and how cushioned the sole is. I can wear flats and be in agony afterwards, low heels that I wore just about every day in the warmer months pre-BC and be in pain. Asics sandshoes which have always been supportive on my feet, do nothing to help the pain brought on by walking. But I bought a pair of Sandler Easy Steps that have a good last and cushioning with reasonably high heels on them (although we're talking work heels not 5 inch towers) and I wear them all day with no extra discomfort. Mind you, I can't usually afford Sandler - it was only that they were out on extra special at Harbourtown that I was able to get them. Even some heeled cheapies I got at Rivers are not too bad as they are cushioned.

Serves me right for peeking! I've been away, and am still a bit away but to the question - Vitamin B was what my oncologist said might help. I think it did, and still take it daily but it's really hard to know, it might have been that the timing was right rather than the Vitamin B and my feet were going to get better anyway. My neuropathy is still there five years on (sorry folks!). Initially I had severe tingling/burning, my toes were really painful and I dreaded anyone standing on them in a tram as I would have simply screamed. But that improved after a couple of months. My feet are still hyper-sensitive to some surfaces and numb to others. It's no worse in winter though. I don't have any pain and my feet don't get particularly cold, but there is still a gap in feeling between the beginning of my toes and the tips and the soles are a bit odd. I get cramps in my toes more often. And I really don't trust myself running (so I don't). It doesn't wreck my life and is only occasionally annoying. Hang in there.

A magnesium supplement was recommended to me before I started chemo and I have been taking it all through my treatments. Only 5 doses of Taxol left and so far so good in the neuropathy department.Fingers crossed.

EASTMUM this is the company for the colourful one. The other I got from a local shop Cheveux on Hay. It is called a Bamboo Flower Turban. It is plain black. In the photo I have added a normal headband of my own for a bit of colour. I will pop the link in for you.

@eastmum @JJ70 I have one of their head wraps too. It's one of my favourites.

Peripheral Neuropathy | BCNA Online Network

160 Replies

strongtogether
Member
6 years ago
@Nefertari Carboplatin is a platinum based chemotherapy drug. I am not 100% but I think it's more useful for people who dont have a BRCA mutation.
Nefertari
Member
6 years ago
@strongtogether
Thanks for the explanation. I don't know what carboplatin is ? I had 4 rounds of AC chemo and then the paclitaxel.
strongtogether
Member
6 years ago

shs14 said:

@strongtogether I'm sorry to hear about your wife's neuropathy. Did you end up trying cold therapy? I know you were asking about it before she started.

No, she didn't.
She is really sensitive to cold and anyway her MO is a bit of an expert on PN and pooh-poohed it.
JJ70
Member
6 years ago
On really vad days, like today U find my Skecher GoWalk shoes the best...but sometimes my feet get really hot in these.
shs14
Member
6 years ago
@strongtogether I'm sorry to hear about your wife's neuropathy. Did you end up trying cold therapy? I know you were asking about it before she started.
strongtogether
Member
6 years ago

Nefertari said:

I get so confused with the names of the drugs. Is Taxol the same as paclitaxel or is that a totally different drug? I am not on any tablets as I am triple negative.
I had Paclitaxel chemo. My PN started with a bang after number 6 and got steadily worse over the next few days, so they stopped chemo. For the first five I only had pins and needles in my hands but that went away in a few days.
Six months later the feet are still a problem and it has now travelled up my right leg, weird sensations, numbness and pain.
I hope it gets better as walking and driving is a problem sometimes.

Hi Nefertari,
Yes Taxol is the same as paclitaxel. It's just the trade name.
We are also triple negative. Did you have Carboplatin as well as Taxol?
Afraser
Member
6 years ago
Paclitaxel is the same as Taxol. PN is a known side effect.
Nefertari
Member
6 years ago
I get so confused with the names of the drugs. Is Taxol the same as paclitaxel or is that a totally different drug? I am not on any tablets as I am triple negative.
I had Paclitaxel chemo. My PN started with a bang after number 6 and got steadily worse over the next few days, so they stopped chemo. For the first five I only had pins and needles in my hands but that went away in a few days.
Six months later the feet are still a problem and it has now travelled up my right leg, weird sensations, numbness and pain.
I hope it gets better as walking and driving is a problem sometimes.
Sister
Member
6 years ago
I made it to 12 taxol but somewhere around 6 or 7 the pn started in my feet - never much in my hands. It made it up to my knees by the time I was finished but the onc was monitoring me very carefully each week, not just where the pn was but how it felt in each spot and I do vaguely recall quite specific questions regarding what I could do with my hands - things about buttons and earrings. I am fortunate that most of it has gone - just a small area on one foot where it started - but that is bad enough for balance at times. And my feet ache so badly if I stand or walk for long - a decent walk can leave me in a lot of pain for 2 days. I had thought this was Letrozole but realise now it's quite possibly a late side effect of pn.
strongtogether
Member
6 years ago
Thank you for paying attention, and for sharing.
I'm not sure why I find it helpful to talk about this, but I know that I do. @JJ70 you seem to have had a rough time of chemo. I hope it gets better soon