Forum Discussion
Never say never
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
I 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!
I 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!
14 Replies
- 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! - Just drink your concrete, ladies!
- Another stupid phrase "It is what it is" WTF else would it be duh. Ooohh how about "moving forward" uggghhhhh
- Thanks Afraser
- 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. - 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. - Oh, I'm stealing the word. But it should be embargoed
- 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’. - @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 :) - 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.
