Neuropathy anyone?

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cancer0205
cancer0205 Member Posts: 9
edited March 2014 in Colorectal Cancer #1
Hello! I have started to get neuropathy in my finger tips and feet. It is from the oxcoliplatin chemo. My oncologist stopped the oxi and continued to have folfox and folfuri (sp?) (Had 9 cycles of oxi)I just finished round 12 and am done with chemo for the time being. Just wondering if this neuropathy will go away and how long this might take. My tumor marker (CEA) is at 2.1 normal range. I had two scans today CT/PET and will find out results on Tuesday! If anyone has advice as to what helps with neuropathy, plese send it my way! DEB

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  • sladich
    sladich Member Posts: 429 Member
    #2
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    Neuropathy
    Deb,

    Unfortunately neuropathy is one of the side-effects of chemo, especially oxaliplatin. My last Folfox treatment was in May 2005 and I still have neuropathy in my finger tips and feet. My feet are the worst. Best of luck to you.

    Debbie
  • Patti1
    Patti1 Member Posts: 109 Member
    #3
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    Neuropathy
    Deb,

    My husband was also on Oxiliplatin, he finished his last treatment In may 2006 with Oxiliplatin. Right from the start we had problems with neuropathy. We have discussed this issue in detail still today with our oncologist, the oncologist has told him to take vitamin B Complex, he takes it on a daily basis. He has been told that he probably has permanent nerve damage from the Oxiliplatin. His feet are the worst, i am so sorry that you are dealing with this also. Best of luck

    Patti
  • cancer0205
    cancer0205 Member Posts: 9
    #4
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    Patti1 said:

    Neuropathy
    Deb,

    My husband was also on Oxiliplatin, he finished his last treatment In may 2006 with Oxiliplatin. Right from the start we had problems with neuropathy. We have discussed this issue in detail still today with our oncologist, the oncologist has told him to take vitamin B Complex, he takes it on a daily basis. He has been told that he probably has permanent nerve damage from the Oxiliplatin. His feet are the worst, i am so sorry that you are dealing with this also. Best of luck

    Patti

    Thanks for the replies!
    Thanks for the replies! Several people told me their neuropathy went away after a few months. This would be hard to live with but will do what I have to do. My oncologist told me about alpha lipoic acid. The study done with diabetics proved this worked for their neuropathy. I started to take 600mg daily along with 800mg vitamin E which is supposed to also help. Guess I will see. Sure is painful though. Thanks!
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #5
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    cancer0205 said:

    Thanks for the replies!
    Thanks for the replies! Several people told me their neuropathy went away after a few months. This would be hard to live with but will do what I have to do. My oncologist told me about alpha lipoic acid. The study done with diabetics proved this worked for their neuropathy. I started to take 600mg daily along with 800mg vitamin E which is supposed to also help. Guess I will see. Sure is painful though. Thanks!

    Neuropathy
    Hey Deb,

    I'm one of those who got the neuropathy in my toes and up my shins because of the oxipilatin. Then, while I was getting radiation treatment, I had an oral chemo called cebetine (I know that's not how it's spelled!) and that one did nerve damage in both my heels!! Arrrrgh!! Well, the balls of my feet still have feeling . But it did make it very difficult for walking because it felt like I was walking on stilts... and yes, it did hurt!! I'm not sure if it was the neuropathy that hurt or the nerve damage in my heels but it would hurt to walk... and it would hurt to stop walking.

    My GP prescribed me "Gabapentin", which I'm suppose to take 900mg three times/day, but if I'm not in real pain, I tend to forget ;) The Gabapentin isn't a pain killer per se... it's a med that tells your brain that the pain it perceives as coming from the nerve endings in the feet and heels, is not really pain at all, so just ignore it. It's amazing what they can do with meds these days!!

    You might want to ask your doctor if Gabapentin might help with your pain?

    Huggggs,

    Cheryl
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
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    I took the B6 route...
    After chemo, I took B6....really seemed to cut the neuropathy...now, 3 years later, I'm down to one toe that's numb...AND that was all after 4 rounds of Taxol for the breast cancer, too...(notorious for tingles in the fingers...)

    Hugs, Kathi
  • dixchi
    dixchi Member Posts: 431
    #7
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    neuropathy
    The Neuropathy Association has a website and might be a helpful resource
    for information. My onc. also prescribed neurontin or gababentin altho
    I decided to tough it out. My first four treatments back in the spring
    before surgery, I was having more problems than now; I am going to have
    my 4th treatment of 8 next Tuesday and will just see how it goes; it does
    not seem to be as bad this second round.
  • jams67
    jams67 Member Posts: 925 Member
    #8
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    neuropathy
    I still have numbness in my feet and fingers and sometimes in my hips after 3 years. A nuerologist told me that when you have neuropathy, that you don't have it just in an isolated area, but in your entire body. I am almost used to it now after having it so long, but I find I drop things more easily than before and can't wear pretty shoes for very long.
    Jo Ann
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #9
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    jams67 said:

    neuropathy
    I still have numbness in my feet and fingers and sometimes in my hips after 3 years. A nuerologist told me that when you have neuropathy, that you don't have it just in an isolated area, but in your entire body. I am almost used to it now after having it so long, but I find I drop things more easily than before and can't wear pretty shoes for very long.
    Jo Ann

    neuropathy
    Wow Jo Ann, your description is pretty much exactly what mine is, although mine is mostly in my feet, the toes, tops of the feet and halfway up both shins. I had never thought of it as being in the entire body... but that does make sense. I find I drop things a lot more than I used to and just put it down to me being a klutz as I get older ... but maybe there actually is a reason :)

    But oh do I hear you on not being able to wear pretty shoes... heck, I can't wear shoes period for very long!! I end up wearing flip-flops which, although comfortable for the goofy feet, they are the worst thing I can wear because there is absolutely zilch support in them! Now that we are getting into our Fall (read: rainy) weather... flip flops are super dangerous to wear because of the slipping and sliding when wet.

    :::putting on my to-do list::: Must take the time and go get fitted for comfortable sneakers and a comfortable pair of shoes that can go with skirts/dresses! Thanks!!

    Huggggggs,

    Cheryl
  • JoyceCanada
    JoyceCanada Member Posts: 134
    #10
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    I still have neuropathy in
    I still have neuropathy in my feet. It feels like a tight "elastic band" from my toes to the middle of my feet. I have trouble getting my feet into shoes because I feel as though my feet are not flexible and will not bend....weird feeling!! I can't say I have "pain" but I cannot walk on any uneven surface with bare feet, no more walking on the beach with bare feet it feels like I am walking on glass. I'm lucky I go south for the winter and can wear flip-flops or crocs. I can't even bend my feet to get into running shoes. My oncologist always asks me "how is the neuropathy?" but hasn't given me any hope that there is any drugs that will help.
  • Faith88
    Faith88 Member Posts: 55
    #11
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    my husband still has neuropathy
    Hello,
    i'm so sorry to hear you are going through this. My DH finished folfox 11 months ago and had neuropathy the last two treatments. The dosage was reduced but it got worse after chemo ended and continued to get worse for about 3 months then it leveled off. His neurologist told him it could take up to 2 years to improve but usually after that it's considered permanent. He's tried different things, Vitamins and alpha lipoic acid. I don't think it hurts to try it, since everyone's chemistry is different.
    The Neurontin (gabapentin) he takes for the nerve pain is a life saver and thankfully some days aren't too bad he said. If he has to take drugs at least this one seems better than some others out there.
    I pray that yours was caught or stopped before too much nerve damage done. I almost think they shouldn't use that one drug but the oncologist said it boosts survival rates so all things considered it's probably necessary.
    Best wishes to you and I hope you are one who finds it only a temporary condition and will improve with time.
    Faith88
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #12
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    B6!
    Hi,

    I was given the advice of taking B-12, but mostly B-6. I faithfully took B6 & found that the neuorpathy in my hands (which was pretty bad- numbness, lost strength, dropping things), is back to normal by about 90-95%. The only time I still notice it's a probblem is when I have to clap my hands- that feel pretty ickly. Other than that, they seem fine. The balls of my feet still give me trouble. I can now put shoes on without the feet feeling awfl, but still hate walking on a hard surface barefoot- it still feels like cardboard is stuffed between my toes and stuff to the ball of my feet.
    I keep taking the B-6- I'd definitely try it if I were you. I hadn't heard bout the alpha lipoic acid, as someone mentioned above. If neither have side effects or interact with each other, it probably wouldn't hurt to try both.

    Best wishes,
    Lisa
  • pamness
    pamness Member Posts: 524 Member
    #13
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    Neuropathy
    I was diagnosed IIIA is January 2007 - I did surgery, followed by folfox and radiation with 5FU. I was taken off the oxaliplatin after 6 rounds because of the tingling - neuropathy in my fingers and feet. I finished 8 rounds of chemo with the 5FU and leukovorin. My fingers got better in about a month or so, my feet continued for about 6 months and then slowly returned to nornmal. I finished treatment in early September 2007. I was surprised when my oncologist took me off the oxaliplatin - I had the tingling for a month before they took me off.

    He didn't feel that the benefit of the last 2 rounds outweighed the risk of being permanently impaired.

    I am currently NED.

    One thing I did do was move my toes and fingers as much as possible, it seemed to help - not very scientific. I had foot massages very consistently both during and after chemo, I think this helped - a friend of mine trained in China for massage. So I might have been lucky.

    Pam
  • impactzone
    impactzone Member Posts: 551 Member
    #14
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    B6 here as well. It took
    B6 here as well. It took about 1 year for me and I still feel it on cold mornings...Good luckj on your scans.
    Chip
  • crazylady
    crazylady Member Posts: 543 Member
    #15
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    CherylHutch said:

    neuropathy
    Wow Jo Ann, your description is pretty much exactly what mine is, although mine is mostly in my feet, the toes, tops of the feet and halfway up both shins. I had never thought of it as being in the entire body... but that does make sense. I find I drop things a lot more than I used to and just put it down to me being a klutz as I get older ... but maybe there actually is a reason :)

    But oh do I hear you on not being able to wear pretty shoes... heck, I can't wear shoes period for very long!! I end up wearing flip-flops which, although comfortable for the goofy feet, they are the worst thing I can wear because there is absolutely zilch support in them! Now that we are getting into our Fall (read: rainy) weather... flip flops are super dangerous to wear because of the slipping and sliding when wet.

    :::putting on my to-do list::: Must take the time and go get fitted for comfortable sneakers and a comfortable pair of shoes that can go with skirts/dresses! Thanks!!

    Huggggggs,

    Cheryl

    shoes
    Hi Cheryl,

    I have neuropathy in my feet and find that I can't wear any closed shoes without being in a lot of pain. I also have extremely wide, hard to fit feet. The only thing that works for me is crocs. They are not completely open like flip-flops and they have fairly good support. They also make them fleece lined for the winter.

    Hope this helps.

    Jamie
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #16
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    crazylady said:

    shoes
    Hi Cheryl,

    I have neuropathy in my feet and find that I can't wear any closed shoes without being in a lot of pain. I also have extremely wide, hard to fit feet. The only thing that works for me is crocs. They are not completely open like flip-flops and they have fairly good support. They also make them fleece lined for the winter.

    Hope this helps.

    Jamie

    Crocs
    Hey Jamie!! Thanks!! My flip-flops are Crocs, but (grin) I really shouldn't be wearing flip-flops, even ones made by Crocs, in the rain ;) Tonight, I actually wore a pair of black crocs that felt great because, for some reason, the swelling in my feet went down today, so I could fit in them. Can you believe it?? Sometimes the swelling in my feet swell so much that I can't even fit my feet into Crocs!

    I haven't seen the fleece lined ones yet!! I will definitely have to keep my eye out for them. Meanwhile, I think I should buy a comfy pair of sneakers... so it's a matter of going and finding the right ones :)

    Hugggggs,

    Cheryl
  • taraHK
    taraHK Member Posts: 1,952 Member
    #17
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    Mine went away
    I've had two courses of oxaliplatin. Had neuropathy both times but I'm happy to say that both times it faded -- almost 100%. It took over 6 mos. But it did get better! I did B6. Don't know if it helped or not.

    I'm currently on oxaliplatin again. Ouch.

    Tara
  • tasha_111
    tasha_111 Member Posts: 2,072
    #18
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    taraHK said:

    Mine went away
    I've had two courses of oxaliplatin. Had neuropathy both times but I'm happy to say that both times it faded -- almost 100%. It took over 6 mos. But it did get better! I did B6. Don't know if it helped or not.

    I'm currently on oxaliplatin again. Ouch.

    Tara

    Neuropathy
    I finished my Taxotare treatments in July and can still barely walk, sleep or drive due to the neuropathy, I stagger about like some drunk and can't get the change out of my purse either. Gabapentin did no good at all and made me dizzy. Doc now has me on Lyrica..Doesn't seem to be doing any good either..Good luck J xxx

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