https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-SheetI was looking for some information on PN just to check how long it may take for improvements to keep happening and found this site, which I think is pretty useful. Most tend to focus on pain relief, which is absolutely fair enough if you have pain, but I don’t and was looking for more info on sensory nerve damage. Because my feet just took another small step forward - absolutely no idea why but good stuff! I can feel most of the area between my soles and my toe tips - doesn’t feel entirely normal but definitely there! Toe tip feeling came back nearly two years ago. I can walk perfectly well, just don’t trust myself running! Happily sensory nerve cells can revitalise themselves it seems. Seven and a bit years and who’s counting! But millimetre by millimetre we are getting there!

@Afraser good article'Happenstantial' Gawd, don't let the "Not a known side effect' and 'I've never seen that before' and ''That won't have helped you with something that wasn't there' mob get hold of such a word.BTW, I'm currently all wound up about 'resiliency'. It's suddenly entered the Australian lexicon in a way that is entirely grinding my gears.Yet another weasel word that sounds like you give a shit, but the other person is not quite doing their part.As you would know, I never miss an opportchancity to have a bit of a grizzle :)

Have you had any nerve studies done @Afraser? Different nerve damage I know but my mother had bilat knee replacements 7 months ago. One went perfectly and the other ended with her having a totally numb tingly foot that she called the brick. So after 6 months of "gee that's never happened before" from guru surgeon he finally sent her for a nerve study that pin pointed which nerve and how much was damaged. As it turns out there's not much to be done until it regenerates itself which is about 1 mm per month so she figures its about 400 days away. :)

great news @Afraser, slow and steady! :) @kezmusc, kitty flanagan reckons when people say ‘ it is what it is ‘ they are trying to end the conversation lol :D she hates it too!

Great news @afraser! Your body has been doing good stuff behind the scenes.

Wow. Good article. I just started taxol so am on the look out for this. One round down (and 3 days later) and I have experienced stabbing pain in thighs and buttocks. The pain is mostly st night. Panadol has relieved it but it makes me rather concerned about my hands and feet. I will certainly be talking to my oncologist on Thursday about symptoms so far. Good @Afraser that your feeling has come back. Thanks for the article.

Never say never | Online Network

Sister
Member
5 years ago
Great news @afraser! Your body has been doing good stuff behind the scenes.
Cath62
Member
5 years ago
Wow. Good article. I just started taxol so am on the look out for this. One round down (and 3 days later) and I have experienced stabbing pain in thighs and buttocks. The pain is mostly st night. Panadol has relieved it but it makes me rather concerned about my hands and feet. I will certainly be talking to my oncologist on Thursday about symptoms so far. Good @Afraser that your feeling has come back. Thanks for the article.
Afraser
Member
5 years ago
Chemo is so hard to predict - PN is just that, peripheral bits of the body usually, hands and feet. I didn’t get any pain to begin with, just tingling and a bit of loss of feeling. My toes did hurt a lot about 2 months in, which was worrying, but stopped, coincidentally with starting taking vitamin B (oncology nurse suggestion). No idea really if the vitamin helped or just happenstantial! No pain since, but feet vary a lot - mainly feeling like you are wearing two pairs of thick socks! But over the last day or so, only feels like one, thinner pair! But as you renew sensory nerve cells (suspected but didn’t know that), it makes some sense.
kezmusc
Member
5 years ago
Have you had any nerve studies done @Afraser? Different nerve damage I know but my mother had bilat knee replacements 7 months ago. One went perfectly and the other ended with her having a totally numb tingly foot that she called the brick. So after 6 months of "gee that's never happened before" from guru surgeon he finally sent her for a nerve study that pin pointed which nerve and how much was damaged. As it turns out there's not much to be done until it regenerates itself which is about 1 mm per month so she figures its about 400 days away. :)
Afraser
Member
5 years ago
No I didn’t @kezmusc, but I imagine I would have heard much the same! Patience is the virtue we all need in this game! Mind you, 400 days sounds positively speedy to me but as you say, different kind of nerve damage. My feet were never totally numb, bit absent in patches and mainly just feeling odd. Hobbit feet - feel overly large and kinda furry! And to continue the Tolkien analogy, I’m on Ent time - we will get there but slowly. Best wishes.
Zoffiel
Member
5 years ago
@Afraser good article

'Happenstantial' Gawd, don't let the "Not a known side effect' and 'I've never seen that before' and ''That won't have helped you with something that wasn't there' mob get hold of such a word.
BTW, I'm currently all wound up about 'resiliency'. It's suddenly entered the Australian lexicon in a way that is entirely grinding my gears.Yet another weasel word that sounds like you give a shit, but the other person is not quite doing their part.
As you would know, I never miss an opportchancity to have a bit of a grizzle :)
Afraser
Member
5 years ago
Sorry!! I was in a meeting a lifetime ago and one of the other participants (I did know her!) said ‘I remember being in a meeting with you three years ago and you said happenstantial.,.and you’ve just said it again!!’
I’ll wash my mouth out.
I hate resilience, -ency and -ent, though. It’s bureaucratese for ‘ we don’t give a damn, just suck it up’.
Zoffiel
Member
5 years ago
Oh, I'm stealing the word. But it should be embargoed
Abbydog
Member
5 years ago
Dear Afraser,
Going back a bit. How far through the Taxol did you get PN symptoms? During or after?
I'm still on the Taxol (2 to go)
It's good to hear improvement is possible, even after some time.
Afraser
Member
5 years ago
Hi @Abbydog
i got my symptoms after my 7th dose - quite mild, just tingling but by my 10th I was ready to stop. Very painful toes. My oncologist and I agreed to go for my 11th but possibly stop after that. But then I found the lump under my right arm!! It turned out to be a totally benign, unrelated schwannoma (new one to me) but scared me enough to want to finish all 12! My feet did not get any worse, stopped being painful soon after finishing chemo but getting back normal feeling has been a slow process. No regrets though, seven years plus and NED. Best wishes.