Neuropathy like childbirth is a memory that is easily recalled

Patteee
Patteee Member Posts: 945
edited March 2014 in Colorectal Cancer #1
10 months since I ended chemo
and it is clear the neuropathy in my hands and feet is permanent
I am thankful that it is doable, with somewhat of a struggle
what bothers me the most?
washing my hands and standing in the shower
water has to be luke warm, not any hotter or colder
or else it feels like electric current going through my hands and feet
and every time I forget about it
and then, "oh yeah, that hurts"

Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    #2
    :(
    It saddens me to hear of you in pain. I've read though it can take longer for it to go away though, some people had it for a couple years before they started feeling it get alittle better, but don't lose hope, you never know, it may just slowly fade away. You're always in my prayers hun, just don't lose the hope on it!

    Hugsss!
    ~Donna
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #3
    oh nooo
    well its only been 4 months for me and to read your post saddens me more.my onc told me the worst of it should be over in 6 months.but she is cuckoo and i wish she wasnt on my team.i was so hoping that by the first of the year it would be gone but as severe as mine is i too mabe like you.do you work? i have always worked but feel i cant right now because of this neuropathy.i cant even pick a penny up off the table.Godbless...johnnybegood
  • Patteee
    Patteee Member Posts: 945
    #4
    johnnybegood said:

    oh nooo
    well its only been 4 months for me and to read your post saddens me more.my onc told me the worst of it should be over in 6 months.but she is cuckoo and i wish she wasnt on my team.i was so hoping that by the first of the year it would be gone but as severe as mine is i too mabe like you.do you work? i have always worked but feel i cant right now because of this neuropathy.i cant even pick a penny up off the table.Godbless...johnnybegood

    yes, I am a teacher.
    yes, I am a teacher. Writing is hard- typing isn't so bad- can't turn the pages in a book, guess that's why they made those rubber finger tips. I can pick up coins, but it is difficult. My walking gait is off- haven't fallen yet, but feels like I could a lot of the time. I don't really notice any improvement in the past 10 months- and yes, this sucks.
  • coloCan
    coloCan Member Posts: 1,944 Member
    #5
    Patteee said:

    yes, I am a teacher.
    yes, I am a teacher. Writing is hard- typing isn't so bad- can't turn the pages in a book, guess that's why they made those rubber finger tips. I can pick up coins, but it is difficult. My walking gait is off- haven't fallen yet, but feels like I could a lot of the time. I don't really notice any improvement in the past 10 months- and yes, this sucks.

    I walk with a cane
    its not my legs that I use it for but in case I lose baLAnce, get dizzy, weaken(ever since surgery in Sept). Also ,have nueorapthy at bottoms of feet from toes to mid-sole, so fAR.Since just started postop round chemo ,tingling will prebably worsen, tho I hope not!!!Steve
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #6
    Hi
    So sorry you are in such pain. ****'s neuropathy is real bad right now too. He finished Folfox on August 18 (now on Folfori + Avastin).
    We know a lot about Heavy Metal Poisoning because our daughter has autism that was caused by a vaccine that contained mercury (yes that's controversial but her MD's all agree). That said, B6, B12 (shots are best, sublingual 2nd best) and alpha lipoic acid are all good chelators. Katie was prescribed all of these by her genetics doc at Cleveland Clinic. They are doing a clinical trial right now with alpha lipoic acid to see if it can lessen neuropathy and not decrease the effects of chemo.
    So... since you are off chemo you may want to consider having the platinum out of your body and giving your nerves a chance to heal. A naturalpath should be able to help you with this.
    Best to you!

    Aloha,
    Kathleen
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    Have you tried....B6?
    I did, after all of my treatments...and the only thing you need to be careful of is not to over do it...you'll know, you'll have a true, honest-to-goodness hot flash!!!!!

    But, it REALLY made a difference for me...also, it was still getting better, 2 years post-treatment...

    Hugs, Kathi
  • Patteee
    Patteee Member Posts: 945
    #8
    KathiM said:

    Have you tried....B6?
    I did, after all of my treatments...and the only thing you need to be careful of is not to over do it...you'll know, you'll have a true, honest-to-goodness hot flash!!!!!

    But, it REALLY made a difference for me...also, it was still getting better, 2 years post-treatment...

    Hugs, Kathi

    yes on a combination of
    yes on a combination of things including B6
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #9
    Patteee said:

    yes on a combination of
    yes on a combination of things including B6

    me too
    i have been taking vitamin b complex[contains all the b vitamins]for 4 months cant tell anything is different just worse .have been taking magneesium for 3 weeks and just started taking600 mg of alph lipoic acid yesterday.sure hope something helps soon.i guess teaching wouldnt be so bad.all i have ever done is factory work.my last job by the way was standing on my feet 12 hours a day 4 to 5 days a week.they got rid of me because their policy is if you are out for one year due to illness or injury they terminate you.the only way to make a decent living in this town is work in factories,my mind wants to work but my body wont let me.trying to get ssd good luck to you and Godbless...johnnybegood
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
    Patteee said:

    yes on a combination of
    yes on a combination of things including B6

    Another thought.....
    I notice when I don't stay hydrated that my 'tingles' in my toes return a bit....

    Hugs, Kathi
  • earied
    earied Member Posts: 22
    #11
    I have it too
    I am 5 months post chemo and I have it in my feet up to my calfs and finger tips. I tried neurotin and it helped some but the side effects where too bad to deal with. I see my onco in December I will ask him about the recommendations noted here. I was told it will take about a year to go away.

    Ann
  • JTL52
    JTL52 Member Posts: 16
    #12
    earied said:

    I have it too
    I am 5 months post chemo and I have it in my feet up to my calfs and finger tips. I tried neurotin and it helped some but the side effects where too bad to deal with. I see my onco in December I will ask him about the recommendations noted here. I was told it will take about a year to go away.

    Ann

    Nueropathy
    Hi Patteee,
    Have hope your nuropathy is not permanent at this point.
    Mine continued to improve for a full two years after completion of chemo.
    I am left with some numbness and tingling in some of my toes only.
    Mine got worse after comletion of chemo for a few months.
    I had no feeling in my fingers from knucles to tips and the soles of my feet were numb from arches to toe tips.
    Good luck and I hope you continue to improve as I did even after the first year.
    I am now 4 plus years out from stage three
    Janet
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #13
    JTL52 said:

    Nueropathy
    Hi Patteee,
    Have hope your nuropathy is not permanent at this point.
    Mine continued to improve for a full two years after completion of chemo.
    I am left with some numbness and tingling in some of my toes only.
    Mine got worse after comletion of chemo for a few months.
    I had no feeling in my fingers from knucles to tips and the soles of my feet were numb from arches to toe tips.
    Good luck and I hope you continue to improve as I did even after the first year.
    I am now 4 plus years out from stage three
    Janet

    hello jtl52
    nice to meet you.i too am suffering terribly from neuropathy from my knuckles to fingers.my legs and feet are getting the worst of it right now.i shaved my legs the other day and could not even feel the razor from my knees down.talk about a slow shave.maybe there is hope after all i have only been out of chemo 4 months and i cant stand living like this.Godbless....johnnybegood
  • lm3933
    lm3933 Member Posts: 6
    #14
    johnnybegood said:

    hello jtl52
    nice to meet you.i too am suffering terribly from neuropathy from my knuckles to fingers.my legs and feet are getting the worst of it right now.i shaved my legs the other day and could not even feel the razor from my knees down.talk about a slow shave.maybe there is hope after all i have only been out of chemo 4 months and i cant stand living like this.Godbless....johnnybegood

    neuropathy in fingers and toes
    I too finished chemo in August. Returning to work was torture and seemed to increase the pain. I am taking neurontin and a vitamin regimen with some success. Then, last week I went to see an acupuncturist. I can now feel with my fingertips. I burned my finger last week when I was draining spaghetti. I was thrilled. My son wa surprised that anyone would be so happy to feel a burn. I am truly thankful to be able to feel all the sensations ...the texture of my sweater, the softness of a baby's skin, even a little steam burn. Wow, you don't know what you have until you lose it. My symptoms, too, seem worse when I am dry. I see the acupuncturist again tomorrow, and hope it helps my feet and legs, then I will wean off the neurontin. Have a blessed Thanksgiving. Ronnie

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