neuropathy from oxaliplatin

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neuropathy from oxaliplatin

by skpete on Wed Sep 30, 2009 12:00 AM

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I appreciate your stories of neuropathy from oxaliplatin treatments. I finished chemo in Nov. of 2006 and have had constant pain especially in my feet. I have tried all the health aids and bought a tens type of electronic shock nerve builder that gave temporary relief, but no healing. I even tried surgery with a podiatrist that did the Delle method of nerve repair which is like carpel tunnel surgery in your feet, called tarsel tunnel surgery. My nerves were so damaged that they did not respond to the surgery. I thought I would share this to save others additional pain. Most of my rectum was removed with the cancer, but my surgen was able to reverse my ostomy after 9 months of chemo and radiation. Sometimes I wonder if that was wise since I struggle with control daily and have to use an enema for a bowel movement. I know this is all to graphic but cancer is not nice. We become guiney pigs to further the study for a cure. If we complain we are told to be grateful to be alive. Believe me I am . I'm 55 years old with 6 grandchildren and 2 more on the way. We have 5 children. So far no more cancer, I go in for another colonoscopy next month so we cross our fingers. The only drug that has helped with th nueropothy pain is oxycodone a few times a day to take the edge off. I know, not a good solution, so if you find something better please post it. Thanks for letting me vent. Sincerely, skpete

RE: neuropathy from oxaliplatin

by Barbara_119 on Wed Sep 30, 2009 12:00 AM

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Sorry to hear about your neuropathy from oxaliplatin. I was lucky that my neuropathy went away in 6 mos.  My feel still get cold faster in the winter. My reminants of oxaliplatin is Pulmonary Fibrosis. I started out with a great deal of reduction in my capability to draw in oxygen therefore was on an oxygen machine 24/7, put on prednisone for over a year, gained 70 lbs from it, which gave me diabetes and osteoporosis!!!! I will be cancer free 5 yrs in Feb 09, and my lungs are doing much better. My lung doctor has switched me from every 3 mos of testing to every 6 months of testing. I only use oxygen when I exercise now.  My lungs will never be better then they are now, but I can live with that.  Your situation is very different because you are in pain. Cancer is a terrible disease and sometimes the cure leaves us with something equally as bad because your quality of life is not good at all. I wish you the best and hope that sometime in the near future they will find something to help you. You can vent on this board anytime.  Keep us posted on how you are doing. Barbara 119

RE: neuropathy from oxaliplatin

by barbrob on Thu Oct 01, 2009 12:00 AM

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 My wife suffered chronic Nuropathy, and what she found  best for it was LYRICA,,, this helped her a lot...

   For all fighting this awful disease DO NOT GIVE UP... KEEP POSTIVE AND KEEP GOING... ALL ARE WINNERS... NO SURRENDER...

    Prayers and Best Wishes  ..... 

 

RE: neuropathy from oxaliplatin

by freespirit on Tue Oct 06, 2009 12:00 AM

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I have neuropathy from oxaliplatin also, I tried whatever I heard would work and tried vitamins until I read that vitamins can heal the cells that we tried to kill with the chemo. Gabupentan seemed to help at first but after a while it didnt make any difference and I noticed, when I forgot to take it, that it didnt matter if I took it or not I was still the same. Eventually it wore off from my hands, mostly, but still is in my feet and legs to my knees. Seeing that it went away from my hands , mostly, it still tingles a little, and stayed in my legs make me think the "cures" didnt really work or why did they work in my hands but not my feet...Good luck with it and I hope you can find some peace in all of this, trust and hold onto God no matter what!!

RE: neuropathy from oxaliplatin

by gomee on Sat Oct 10, 2009 12:00 AM

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On 9/30/2009 skpete wrote:

I appreciate your stories of neuropathy from oxaliplatin treatments. I finished chemo in Nov. of 2006 and have had constant pain especially in my feet. I have tried all the health aids and bought a tens type of electronic shock nerve builder that gave temporary relief, but no healing. I even tried surgery with a podiatrist that did the Delle method of nerve repair which is like carpel tunnel surgery in your feet, called tarsel tunnel surgery. My nerves were so damaged that they did not respond to the surgery. I thought I would share this to save others additional pain. Most of my rectum was removed with the cancer, but my surgen was able to reverse my ostomy after 9 months of chemo and radiation. Sometimes I wonder if that was wise since I struggle with control daily and have to use an enema for a bowel movement. I know this is all to graphic but cancer is not nice. We become guiney pigs to further the study for a cure. If we complain we are told to be grateful to be alive. Believe me I am . I'm 55 years old with 6 grandchildren and 2 more on the way. We have 5 children. So far no more cancer, I go in for another colonoscopy next month so we cross our fingers. The only drug that has helped with th nueropothy pain is oxycodone a few times a day to take the edge off. I know, not a good solution, so if you find something better please post it. Thanks for letting me vent. Sincerely, skpete

wow, dont know that anyone will see this since it was posted awhile back, but finally, someone who feels my pain.  i mean, im sorry you do, but know one else understands; even the doctors.  oxycodone is the only thing i have found to give me any kind of solution to my pain, although, as you say, it just takes the edge off.  i went back to work three months ago and my feet have gotten worse and i had one very severe round of dehydration.  no one at work knows of my situation, and the only reason i went back was to alleviate some of the burdon from my parents wallet and because everyone else i know thinks or thought it was time.  im sorry, but know one knows what pain im in every minute of every day.  i cant breath half the time because of the oxycodone but i cant function without it either.  ive tried everything else non narcotic but the doctors are reluctant to give me hi doses of narcotics.  even they are clueless to the severity of our issues. 

i wish you luck my friend and am glad youre glad youre still here.  i hope to find that some day.  the rest of my message is related to my colon cancer and maybe a pity party for myself, but i need to vent every once in awhile and all my people are tired of hearing about it.  so, at least the people that stumble across it here can simply push delete and it doesnt hurt my feelings like people walking out of my life seems to do. 

i was diagnosed with colon cancer in 07 with all of the requisite surgeries and chemo and radiation.  since then my life has been hell.  the main reason i got on here today was mainly to vent.  my live-in girlfriend left me a month after surgery, it seems if i try to see anyone new they are frightened of my past life, although, i must admit that maybe my lack of zest for life has severely diminished since my first surgery.  the original surgery went nothing like as planned and i ended up with an ostomy, which my doctor, going in knew severly that i did not want.  i swore i would never have one, but with the woman in my life i thought i had found a reason to live which i had lost for quite some time.  every since then i have even had difficulty going through the motions and friends and family seem to think its simply time for me to move on; as they have.  id say my mother is the only one left for me and thats probably because she feels guilty.  my dad seems to be having sympathetic pains in his hips which have caused him to repeatedly go to a pain management doctor in their tiny town that i think is simply bilking him of his money.  but anyway,  upon reading something in a cancer journal recently, and something that kind of occured to me way after the fact of all my surgeries and treatments, i wonder how long i could have gone on with no surgery, as was my original plan had i kept my head on straight.  believe me, could i go back and do it all again, i would go with my original plan and not do the surgery.  and if i knew what the chemo would do i wouldnt have done it either.  the only good thing that happened from all of this is that my hair simply thinned and i did not go bald.  i would have been an ugly bald person.  i am due to have another surgery next month to revise my revision that put everything back inside and left me with a stoma to use a catheter on instead of a bag.  i have terrible gas problems (if anyone has any ideas other than charcoal or the gas-x stuff im all ears), and ive had to try to get my stoma to accept a bag for the last month as i finally got tired of things exploding uncontrollably and making a mess of things (sorry, but literally) for the last three months more so than the previous 9.  although, i still had pretty dependable problems.  ive finally got a bag to stay on a day or two but thats only happened twice.  i have to plug my stoma when i change my setup because it leaks continually and quite regularly have gone through 4 bags in a 12 hour period.  the one slightly good thing is im a welder in a shop, so unless people notice my trips to the bathroom the environment is better for my problems than say a nice clean office environ.  it has been so bad ive had to change pants, walk around wet (after cleaning up the best i can) and walk around in pain. 

well, i seem to have gone off on a tangent here for which i apologize, but i appreciate the message board for being here.

michael

RE: neuropathy from oxaliplatin

by Karenb on Sun Oct 11, 2009 12:00 AM

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So sorry to hear about your nerve damage and that surgery was no relief.

I don't know if this will work for you, but I took 500 mg of L-Glutamine. It virtually reversed my neuropathy in hands.

Feet act up when it's cold. I miss walking barefoot. I always have on slippers or socks or shoes.

The oxaliplatin took a long time to get out of my system. But I am doing very well now.

 

 

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