Neuropathy inquiries

[ElayneZ]

Hello all - I finished 18 weeks of carbo/taxol on Nov. 1. Had some tingling in hands and toes before finishing chemo which I was told happens. I did ice hands and feet during Taxol. Has anyone had this continually worsen after finishing chemo? Mine has definitely been more painful the last couple months - mostly at night. Thank you for your input! Blessings to each of you! ~Elayne

[Grace-53]

Yes, I read somewhere on the internet that it happens post chemo and it’s more than during chemo. It’s called coasting. My doctor advised me to try PEA (Palmitoylethanolamide), which I’ve been using now for a month with no visible results. It says that often you have to take it for at least 3 months to see results.

My case I think is milder than yours, for instance it doesn’t bother me at night.

Best of luck, I hope it doesn’t get worse and will slowly disappear altogether.

Grace

[ElayneZ in reply to Grace-53]

Thank you Grace. I’m glad yours is a milder case! I didn’t know it would worsen after I finished chemo. Hope it goes away! I see my doctor for my 4 mo check up in a couple weeks. Thanks again. Blessings!

[Cropcrop]

Hi ElayneZ, I had neuropathy both during and since completing chemo. My oncologist has said that the symptoms can initially seem increased post chemo as the treatment is cumulative so it seems fairly logical that the neuropathy would increase slightly, should we be unfortunate to experience it, but that in many cases the neuropathy symptoms will decrease and often disappear completely often within around a years time frame. Sadly there are always exceptions to every rule and some of us will have permanent neuropathy symptoms and I still do nearly 5 years on. If it’s any comfort to you I now mostly have just the tingling and pins and needles in all my extremities with very seldom pain occurrences. It’s not ideal but it is a trade off I’m happy to deal with given some of the awful possible alternatives.

I hope your symptoms start to decrease very soon, there are meds that can help but they can have side effects also. Maybe you could speak with your oncology team? Good luck with this lovely ❤️Xx Jane

[ElayneZ in reply to Cropcrop]

Thank you Jane. I agree with you - it’s a trade off considering possible alternatives. I see my onc dr in couple weeks and will ask him as well. Thank you again! Blessings to you!

[janmark43]

I have had neuropathy in my feet since chemo in 2016. It doesn’t seem to change. I don't notice it in the daytime but wearing bed socks at night definitely makes it more comfortable. At the moment I am also taking paracetamol because of other discomforts.

[ElayneZ in reply to janmark43]

Thank you for sharing. I was surprised it worsened after chemo ended. I ordered a pair of bed time socks and hope that will help. Blessings to you!

[Maus123]

Yes, Elayne. Mine got worse after chemo, although it manifests as pain in my feet, not tingling. And then, 4 months on, the pain started to abate just a little bit, ever soooo sloooowly.

I did ice my hands and feet too. Hands are fine.

Right after chemo, I added Vitamin B and ALA (alpha lipoic acid) to my dailies, to try and help speed up the recovery. No idea if it has any effect or if the pain lessened of its own accord.

Hope it'll get better for you soon. Xx. Maus

[ElayneZ in reply to Maus123]

Hi Maus - thank you for sharing. I would agree it’s more painful than tingling. It isn’t every night but gosh when it does - it sure hurts. Left foot and left hand. I’ll check in to Vitamin B and ALA. I was taking L/ glutamine when I finished chemo but a naturapath told me to stop those. I think they were helping the neuropathy but she has me on 2 fish oil tablets and 2 Inflamatone - an anti inflammatory. Thank you again! Blessings!

[moonbeam4]

Alpha Lipotic Acid or ALA definitely sorted me out, 33÷÷÷+2×2

[ElayneZ in reply to moonbeam4]

Thank you! Glad it helped you! Blessings!

[Birdsong222]

Hi Elayne

Mine only kicked in towards the end of my first line chemo. Finger tingling disappeared within weeks of finishing chemo but my painful feet have lasted throughout last winter, now much less sever and in the recent warm weather no issues. Main thing l found was to keep my feet as warm as possible with warm woollen day socks and bed socks at night.

I hope you begin to get some relief from your symptoms.

take care Sylvia x

[ElayneZ in reply to Birdsong222]

Hi Sylvia - thank you for the tips! Glad it has improved for you! That’s encouraging! We had a much wetter and colder winter than usual in California - so hoping warmer weather will be key. Thanks again! Blessings!

[Hidden]

Hi Elayne. It began in my feet (only) after first line had finished. It only lasted a few short weeks, then went. Never returned. Second line was carbo/caelyx . I've been in remission for > 5 years this time. Good luck to you.

Pauline.