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
- Hmmm...PN did return for me. I thought it was gone, but alas, it is not. I still take Vit B (mainly 12 is the good one) and Alpha Lipoic Acid (recommended by head of Cancer Council here in WA) . Just started reading 'Numb Toes and Aching Soles - Coping with Peripheral Neuropathy by John A. Senneff and shall report back any findings from this book.
I did a big 6km walk a few weeks back and at the end I was limping home - I almost felt I needed to crawl the lst 100m, my feet were so goddamn sore. I used to run 10km a week before BC! RARRRR!!! - My oncologist’s nurse suggested Vitamin B. I took a Mega B a day and my symptoms (at that stage feet that were both seriously losing normal feeling and extremely painful - weird but possible) ceased to get any worse and started improving. If may have been utter coincidence. But extra Vitamin B is unlikely to do any harm. A/C is always seen as the ‘hard’ one - for good reasons - but I loathed Taxol. Most of the other irritating side effects cleared up pretty soon after finishing the course but PN can linger so caution is wise. Best wishes.
- @strongtogether A lot of people come off taxol early for this very reason. It is more common than people completing the treatment. Sticking your hands and feet in iced water throughout treatment supposedly helps but not sure if it would be any help once the PN has already gotten hold. Big hugs to you both.
- I hate PN.
All of the AC chemotherapy is complete, and we are halfway through the 12 Taxol/carboplatin treatments. PN is getting bad to the point that the MO is talking about coming off the TC early.
Has anyone figured out a practical way to reduce the peripheral neuropathy that works? - In case it helps, I follow someone on Instagram who has bad peripheral neuropathy, and she finds these socks really helpful. She suggests wearing a tight fit.
https://www.socksforliving.com.au/collections/balega/products/balega-hidden-comfort-neon-blue - @JJ70 Brilliant Jo.
- Well done, @JJ70 - perhaps that slight reduction was all that was needed to prevent it becoming chronic!!
Awesome result xxx - Excellent result, well done. My manageable side effects aren't going anywhere much and after nearly 6 years are, I think, permanent. Still taking Mega B, foot massage and paraffin wax treatments feel great but don't change much. I don't have problems with cold. Just occasionally I'd really like them to feel normal, but as long as they function and don't hurt, it's OK!
- OK...so I am very happy to report that my PN is definitely gone - adios NON-AMIGO! My PN lasted 9 months in total - after dose dense chemo - 4 rounds of Paclitaxel (which caused the PN)
Treatment: I took Mega B vitamins, Alpha Lipoic Acid, kept them warm during winter. Covered at all times due to lack of sensation and probable stubbing of toes etc. Bought myself a foot spa with magnesium salts, went to reflexology fortnightly and employed friends and family to rub my feet wherever possible.
Importantly, I informed my oncologist after round 2 of Paclitaxel that pins and needles had commenced. My last chemo was reduced by 50ml - as a precaution against permanent PN.
Hope this info helps others suffering from PN. Hang in there. x - @Sister I’m slowly getting feeling back in my arm/armpit after the node removal but I think some of it will be numb forever.
