I Had Neuropathy Improvement out of Nowhere Two Years Later :)

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NewHere
NewHere Member Posts: 1,427 Member

During chemo I had all the things, but pretty much minor for a couple of days - hiccups two days once and done for entire treatment, etc.  The only ones that were more was losing hair (all over my body pretty much), cold sensitivity and the fun with that when touching things or eating and neuropathy.  The hands are probably 95% fine with some little flare ups now and again.  My toes were bad.  Before chemo, I would be barefoot all the time around the house and wore Birks sockless all the time.  After chemo, wore socks all the time because without socks I would feel the numbness and "weirdness" of my toes.  Not completely numb, but very close.  

Was even talking about this about two weeks ago with my brother during a visit.  I kept on wiggling my toes in my socks and he asked how I was doing with it.   I told him I was pretty much resigned to wearing socks and having the feeling, but in the grand scheme of the initial DX and the met and all the rest I guess it is not the end of the world.  Then about two days ago, out of nowhere, a drop in the the feeling on numbness in my toes.  Not fully resolved, but I can walk barefoot and not feel that weird feeling in my toes to the point that I needed socks.  I am not quite sure how I would describe the neourpathy either before or after, but I am guessing many people probably understand my socks thing and how it helped.

It really does feel like someone threw a switch.  I may have thought it felt a little better at one point duinrg the couple of weeks since I talked to my brother, but there was an instant where is was "holy crow, my toes!!!." I wiggled them to make sure I was not dreamning about it.

I finished my chemo the end of August, 2015 and figured whatever improvements were done.  Figured I would share this with everyone because things can take (longer) time than expected.  I sort of had 12-18 months in my mind as time for improvement.  It is close to 23 months for me on this one.

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  • Tunadog
    Tunadog Member Posts: 235 Member
    edited July 2017 #2
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    Thanks for the positive report.

    I'm about a year out from my Oxaliplatin and Xeloda treatment. Hands are about 98% recovered, waiting on my feet.

    Thanks

  • Cindy225
    Cindy225 Member Posts: 172 Member
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    Two Years Later

    Awesome to get improved sensation in your toes!  Yikes two years is a long time.  I finished chemo early June and have neuropathy in both fingers and toes plus balance issues. Still banging into doorways and walls. Interesting about having to wear socks as the feeling I get when I put them on is that I'm walking with cotton balls with everything lumpy when there are no lumps so I prefer walking in sandals.  Hair hasn't stopped falling out which is such a bummer although can see some hair starting to sprout. Having to wear hats to my keep scalp from getting freckles. Hope neuropathy continues to improve and you get your full toe wiggling action completely back!

    Cindy  

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited July 2017 #4
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    Nice! I hope mine goes away

    Nice! I hope mine goes away from my feet one of these days! Congratulations!

    Jan

  • abrub
    abrub Member Posts: 2,174 Member
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    I was told 2 years

    But any neuropathy you had at that point was likely permanent.

  • plsletitrain
    plsletitrain Member Posts: 252 Member
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    Thanks for this..

    Its inspiring to read these good news.  It serves as inspiration to those who think they've got it all too bad.

    I look forward to the day that I will hear the words NED from my onco.

  • GmaAnn
    GmaAnn Member Posts: 3
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    Thanks

    I am 1 year out and my hands are much better but my feet and legs are still very numb, dead feeling, tight and feel swollen. I also feel like I am walking on pads here and there under my feet. They also are worse the more I walk. So frustrating because I have regained the 30 pounds I lost. It is a small thing compared to having cancer and going through chemo though so I am grateful! Maybe by next year my lower extremities will be better!

  • cruzinsusan
    cruzinsusan Member Posts: 1
    edited August 2017 #8
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    Neuropathy

    Hi this is my first post.  I have stage 4 colon cancer diagnosed last Aril.  i had surgery to remove the tumor in my colon and now I have been on Advastin and 5FU for 14 months.  I was on oxciplatin  for a few months but not now.  My hands are not to bad but as stated above my feet, toes and ankles are numb and at times I get some shooting pain (this really just started). I appreciate all the information provided above and hope to continue this for years to come.

    thank you 

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited August 2017 #9
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    Woo hoo!

    I think that deserves a image.

    This happened to me, also. I can't remember how far out from chemo I was, but yes, one day in the bath, I realised I could suddenly 'feel'.  Sure, its not perfect, but certainly better. 

    I am four years out from treatment. I still have balance issues, and I still have neuropathy, but its not near as bad. I'll take any improvement and RUN with it, as I know you do. 

    Happy day!

    Tru

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Wonderful

    That is excellent news.  I'm so glad that this terrible side affect is now getting better.  Wiggle your toes, feet and hands and do the happy dance :)

    Kim