hello all new to board

Muzzy
Muzzy Member Posts: 175 Member
edited March 2014 in Colorectal Cancer #1
Hello all
I spent the last 3 hours reading the board and was moved with all the support.
I'm a stage 4 survivor of colon cancer. I had surgery last year November and started chemo in jan. and finished in july.
I have a question that i'm hoping someone has an answer too.
I have been struggling with neuropathy from the 11th treatment on,2 months ago. Is there an end in site?
My Doc says it from the oxyaplatin.
Also is there anything i can do, to help it on it's merry way?

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Hi there
    Hello

    Your neuropathy is definitely from the Oxaliplatin. Unfortunately, with the neuropathy only time will tell if you can recover some or all from the treatments. In some cases, the neuropathy will decrease and in others it becomes a permanent condition - just depends on each person as we all handle the chemo differently with our bodies.

    I only made 8 of those treatments before I had to stop...I still get some tingling in my feet sometimes but the other side effects have pretty much disappeared. It takes for nerves to regenerate if they are going to.

    You just finished up your 11th treatment, so you have alot of toxicity built up in your system - it will stay there for awhile and over time will dissipate.

    I used Magnesium Sulfate during my infusion to help with neuropathy.

    I've heard that vitamin B-6 can help with neuropathy so maybe give that a try.

    Oxy is a very powerful and nasty drug, as you know all to well by now...it gives with one hand and takes from the other. But the good news, is that you are still with us :)

    I wanted to Welcome you to the board. My name is Craig and you can click on my name to ready my story if you want to...I'm 5+ years into the battle and have been down these roads and wanted to respond to your post and say Hi.

    All the best
    -Craig
  • Muzzy
    Muzzy Member Posts: 175 Member
    #3
    Sundanceh said:

    Hi there
    Hello

    Your neuropathy is definitely from the Oxaliplatin. Unfortunately, with the neuropathy only time will tell if you can recover some or all from the treatments. In some cases, the neuropathy will decrease and in others it becomes a permanent condition - just depends on each person as we all handle the chemo differently with our bodies.

    I only made 8 of those treatments before I had to stop...I still get some tingling in my feet sometimes but the other side effects have pretty much disappeared. It takes for nerves to regenerate if they are going to.

    You just finished up your 11th treatment, so you have alot of toxicity built up in your system - it will stay there for awhile and over time will dissipate.

    I used Magnesium Sulfate during my infusion to help with neuropathy.

    I've heard that vitamin B-6 can help with neuropathy so maybe give that a try.

    Oxy is a very powerful and nasty drug, as you know all to well by now...it gives with one hand and takes from the other. But the good news, is that you are still with us :)

    I wanted to Welcome you to the board. My name is Craig and you can click on my name to ready my story if you want to...I'm 5+ years into the battle and have been down these roads and wanted to respond to your post and say Hi.

    All the best
    -Craig

    thank you
    Thank you for your reply. I could not sleep last nite and found this site surfing the net.
    After reading the board I wish I'd found it earlier. You all are so supportive. That is something I could have used alot. I hope to be as supportive as all you. Thanks
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #4
    Muzzy said:

    thank you
    Thank you for your reply. I could not sleep last nite and found this site surfing the net.
    After reading the board I wish I'd found it earlier. You all are so supportive. That is something I could have used alot. I hope to be as supportive as all you. Thanks

    welcome muzzy
    i too wish you could have found this site earlier.my mom found it for me ,she stayed with me until i had my colostomy reversal.it seems you and i are about a month apart on our way to recovery.my surgery was in dec.08 and i finished 10 treatments of oxy and 5fu pump in july so i have been NED for almost two months and my main concern is this neuropathy.it is even moving up my legs now.it seems it is getting worse everyday.i am taking the vitamin b complex but so far it is not working.the people on this board say it just takes time.i tell you this crap hurts,i am going to go for now as the tips of my fingers are burning from typing.hope yours gets better.Godbless....johnnybegood
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #5
    H Muzzy!
    Hubby is kin to the Musaraca's and many of them go by Muzzy. :o)

    Welcome to the board. I completed my 12th tx. almost a month ago and the neuropathy got worse quickly and then seems to have stabilized. My doctor had told me to expect 6 months to a year of tingling and dropping things. My hands feel better when they are kept busy. I knitted all during chemo and do so for quite a bit each day. A friend from another site told me her hands felt better if she'd stretch them into a big 5. I tried it and it does help. No other suggestions other than 'hang in there' and God Bless,
    Diane Tavegia
  • Muzzy
    Muzzy Member Posts: 175 Member
    #6
    johnnybegood said:

    welcome muzzy
    i too wish you could have found this site earlier.my mom found it for me ,she stayed with me until i had my colostomy reversal.it seems you and i are about a month apart on our way to recovery.my surgery was in dec.08 and i finished 10 treatments of oxy and 5fu pump in july so i have been NED for almost two months and my main concern is this neuropathy.it is even moving up my legs now.it seems it is getting worse everyday.i am taking the vitamin b complex but so far it is not working.the people on this board say it just takes time.i tell you this crap hurts,i am going to go for now as the tips of my fingers are burning from typing.hope yours gets better.Godbless....johnnybegood

    speedy recovery
    Well then I hope for a speedy recovery for both of us. I'm glad I found the site and i'm sure it can help us in the future.
    I'm sure the NED will go away but is really nice to talk with other people who are going thru or have gone thru it.
    After chemo was done I was lost. I got alot of answer to my questions just reading the site.
    i'm on my way to the store for some vitamin B complex.
    Thanks and God Bless
    Happy to be here!!!!!!!
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    #7
    dianetavegia said:

    H Muzzy!
    Hubby is kin to the Musaraca's and many of them go by Muzzy. :o)

    Welcome to the board. I completed my 12th tx. almost a month ago and the neuropathy got worse quickly and then seems to have stabilized. My doctor had told me to expect 6 months to a year of tingling and dropping things. My hands feel better when they are kept busy. I knitted all during chemo and do so for quite a bit each day. A friend from another site told me her hands felt better if she'd stretch them into a big 5. I tried it and it does help. No other suggestions other than 'hang in there' and God Bless,
    Diane Tavegia

    welcome Muzzy!
    I finished up all 12 rounds in May, and I guess the last two the neuropathy seemed to be getting worse. About a month after, my feet starting the tingling thing, it was hard to keep sandals on my feet! Well, it's been 4 months now, the hands and feet are getting better slowly, it's just the tips of my fingers now (somedays its hard to type tho), and my toes. For the most part, it seems like it's going away.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
    add alpha lipoic acid and L-glutamine to the B-6
    Hi Muzzy,

    Welcome to the board. As I mentioned in my subject title, alpha lipoic acid and L-glutamine are good to add to the B-6 as supplements to take to help with the neuropathy. They were all recommended by my doctor.
    It's been a year and a half since I've finished the oxalyplatin and cisplatin (all platins cause the neuropathy- they actually have platinum in them and that's what causes it, so I've been told). Anyway, my neuropathy actually got worse for a month or so after I finished the Oxy. I thought I was doomed to have it forever and it was really, really bad. I'm happy to say that today my hands are probably 95% back to normal!! The last thing that made me realize it was clapping. After a while, most of the neuropathy feelings dissipated, but I couldn't clap my hands without them feeling horrible "shocks". Finally, I was at a concert at church and was clapping when I realized that all felt normal- no more electrical shock or tingling feelings! This probably was 10-11 months after finishing the oxy. It was a process during all those months. My feet are probably 75% back to normal. Much, much better than they were, but still some numbness and tingling on the balls of my feet and in between my toes. It's still annoying sometimes, but I've pretty much gotten used to it. I'm still taking the supplements in hopes that it will also go away.

    Best wishes to you!

    Lisa
  • kmygil
    kmygil Member Posts: 876 Member
    #9
    Never too late!
    Hi Muzzy. It's never too late to join, so welcome! I hate that you didn't find us earlier, but better late than never. About the neuropathy, it is very common for oxaliplatin treatment. Personally, I did 9 of 12 treatments before having to stop. The neuropathy got worse before it got better, but it did get a lot better. Now there is only numbness on the very bottoms of my feet (solely--tee hee) and none in my fingers. Periodically, I will feel some pins & needles in my feet, but it's no longer something I'm aware of 24/7. I guess you get used to it. I am still on maintenance gabapentin (neurontin.) If I stop taking it, the neuropathy seems to start to creep back up my legs. The meds seem to keep it confined to the bottom numbness. I also use Vitamin B complex as a supplement. Every once in a while my hands will protest if I pick up something too cold so I've learned simply not to do that. I seem to recall reading on this board that one lady had pretty severe neuropathy for 1 1/2 years, woke up one morning, and it had disappeared overnight. I'm still secretly hoping for that to happen....

    Kirsten
  • Shayenne
    Shayenne Member Posts: 2,342
    #10
    kmygil said:

    Never too late!
    Hi Muzzy. It's never too late to join, so welcome! I hate that you didn't find us earlier, but better late than never. About the neuropathy, it is very common for oxaliplatin treatment. Personally, I did 9 of 12 treatments before having to stop. The neuropathy got worse before it got better, but it did get a lot better. Now there is only numbness on the very bottoms of my feet (solely--tee hee) and none in my fingers. Periodically, I will feel some pins & needles in my feet, but it's no longer something I'm aware of 24/7. I guess you get used to it. I am still on maintenance gabapentin (neurontin.) If I stop taking it, the neuropathy seems to start to creep back up my legs. The meds seem to keep it confined to the bottom numbness. I also use Vitamin B complex as a supplement. Every once in a while my hands will protest if I pick up something too cold so I've learned simply not to do that. I seem to recall reading on this board that one lady had pretty severe neuropathy for 1 1/2 years, woke up one morning, and it had disappeared overnight. I'm still secretly hoping for that to happen....

    Kirsten

    Hi Muzzy!
    I just wanted to say hello and welcome to this wonderful forum with wonderful people on it!

    I'm sorry to hear about the neuropathy, I am on Folfiri with Avastin, and it doesn't give neuropathy, so luckily, I don't have it, it's what scares me about the Oxy, I hope I don't ever have to use that.

    Hopefully it will disappear! I wish you the best!!!

    Hugsss!
    ~Donna
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #11
    Hi
    Hi, Muzzy. Welcome to the board! I'm sorry we're meeting this way, but I'm sure you'll find this site to be very helpful and comforting.

    *hugs*
    Gail

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