Neuropathy

[123george]

I've just finished 6 sessions of chemotherapy my toes feet are numb pins needles burning travelling to my legs anybody else get this

[Manchesterlady]

I had this after each session, it is starting to go now after my last treatment four weeks ago , still haven’t got my sense of taste back fully.

[ZenaJ]

Yes, I also have this. It has eased as time as gone by but not completely. I think it can be affected by the weather but not sure if that is true or not. x

[Katmal-UK]

Yes and nearly 15 years on it’s something I still suffer from ‘peripheral neuropathy’. Mine gets worse the more I walk.

[chemlcali in reply to Katmal-UK]

Exactly. It has changed my life forever. I was only able to complete 4 rounds before stopping. I could no longer stand on my feet. I was in a wheelchair before using a cane. I now use a walker and have pain everyday.

[Katmal-UK in reply to chemlcali]

How long ago did you finish the taxol? mine did improve as such a few months after I stopped but has never totally gone away. I did have to use a wheelchair for a while to get out and about but now only occasionally use a cane when I walk a lot.

[123george]

Yes I've just finished 6 rounds of pacactaxal and carboplatin my toes are numb pins and needles burning feeling travelling up my legs feels like my feet are swollen difficult to walk not nice at all

[Trickysite]

I have had swift electric burn sensations lasting a few seconds all over body at various times plus involuntary twitches of feet / legs when lying in bed. When I walk my legs are plodding and I don’t seem to havefine control over where they will land. Now on Olaparib for last 6 months at reduced dose of 400 mg. things slightly better but still need walking stick. Oh, how I long to be Miss Skippy Toes again but I guess it is the price of being alive so not to complain.

[SUE7777]

I had this when I was on paclitaxel and I found vitamin b complex helped, also it gets much better when the chemo stops

[tillycindy]

Please look into A.L.A ( alpha lipoic acid ) ladies it cured my neuropathy and has helped many people with nerve pain/damage not only from chemo but from alcoholism and diabetic neuropathy. I think the starting dose was 600mg and it was the only thing that finally worked after 2 years of horrific pain. 🙂

[FlowerRose]

Yep! And unfortunately for me, two years after chemo it hasn't gone away Was told it's a permanent change now.

[Caleda4]

I have had this for 7 years after first cycles of chemo. I find it worse when it is hot. It does subside over the years but has never totally gone. I find Epsom Salts good,even when I have a shower which is over the bath,as I just out the plug in whilst in there.Hopefully yours may subside more quickly.x

[123george in reply to Caleda4]

Hi I've just been to gp I have weakness in legs and the numbness gp sending me to hospital worried of compression spine anybody had this

[HappyGoLucky66]

I finished chemo in 2020 and still have neuropathy in my feet , hurts to be on them for a long time. I wish it would go away

[purfekt10]

Peripheral neuropathy is common with the chemo used to treat this cancer. While I was going through chemo, I told my doctor about it and he lowered the dose so that it would not get worse. Four years later, I still have some neuropathy, but I can deal with it. I would recommend that you speak with your doctor as soon as possible.

[OvacomeSupport Partner My Ovacome Team]

Hi 123george,

Thank you for your post. I’m really sorry to hear that you are experiencing pain in your toes, feet and legs following your chemotherapy treatment. I can see that members of the forum community have shared their experiences of this, which I hope has been helpful.

As purfekt10 has mentioned above, it’s important to discuss this pain with your oncologist or member of your clinical team so they can provide you with personalised medical advice.

I also wanted to let you know about Ovacome’s information booklet on chemotherapy induced peripheral neuropathy, which can be found here: ovacome.org.uk/peripheral-n...

This booklet explains more about peripheral neuropathy and how it can be treated or managed. I hope this will be useful for you - we can also send this to you in the post, free of charge, if you prefer?

We are here to support you so please don’t hesitate to let us know if you have any questions or if there is anything we may be able to help with. You can reply to us directly through this forum, email us via [e-mail] or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to talk through questions, provide information resources or just to have a friendly chat.

I hope your pain eases very soon.

Best wishes

Sorcha – Ovacome support

[Supermary]

If you are still on chemo and haven’t done icing of hands and feet yet please do

Ice is your friend during chemo

Ice fingertips and toe tips 15 minutes prior , during the drip , and around 15 minutes after

Do this every single time without exception and it helps big time , at least it has for me

Good luck

Margaret

[JanePW1965 in reply to Supermary]

I've heard about that before Margaret. I wish I'd know about it sooner as my mum has neuropathy in her right foot. Useful to know.