My chemo was stopped because of Oxaliplatin side effects, it got to the stage were I couldn't walk more than 100yds before my feet started tingling and were previously the neuropathy had gone by the time of the next treatment I was still having tingling when they stopped. Now nearly two years on I only have occasional symptoms not really tingling but just a "strange" feeling in my feet when they rub against the sheets, also my hands and feet hurt if they come into contact with really cold surfaces for more than about 30 seconds.

When the oncologist asked us if we wanted to stop we said yes but we had been angsting(sp) over the decision for a couple of weeks, in the end because I do an amount of sport and rely on feedback from my hands and feet we decided to stop. On the plus side for me because I had a 9 week break after the first round due to developing an abscess my chemo was spread over 6 months which is the period my oncologist wanted me to have chemo, I think I ended up having 9 out of 12 rounds.

Sorry not so much as advice but more a been there done that, hope it helps.

Mark

GG, I just replied to Russian that for Stage III (no growth through wall, etc.) that I read on colonclub.org that Oxi does most of its 'mop up job' within four treatments. I also read that two ladies said doctor told them Oxi only does a 3-5% better job at most than not having Oxi.

However, on Daily Strength, a search a few days ago pulled up a 5 year old post that said Oxi was a big to do. A friend with advanced Stage IV said Oxi is a life saver for her.

I'm thinking my Oxi will either be discontinued or lowered my next session. Rash and funny feel to my throat....

Thanks so much Mark & Diane for responding. It's so good to hear what has happened to others, or what they have heard. My Dr. said that several (?) years ago they just did Leucovorin & 5-FU, they didn't do Oxaliplatin, at least not for stage 3 and under, maybe for stage 4. Anyway she said they would only stop the Oxi but still give me the other 2 drugs. So at this point in my treatment, next week is 4th treatment. my neuropathy is not that bad, it's bearable but then again I hope it doesn't get much worse. I am scheduled for 12 treatments. Thanks for your help.

For the past two chemo treatments, my Oncologist gave me IV bags of calicum and magnesium, one bag at the beginning of day one of my treatment and one drip at the end of day one of the treatment. It has helped with the sensitivity to cold for both my feet and hands.

Good old Oxaliplatin. Yep, love that one (not). When I had it, I pretty much experienced neuropathy from day 1. I'd leave the hospital with gloves on and couldn't go to the fridge or drink, sometimes even room temperature during chemo was an awful sensation. It pretty much stayed the same until the 11th treatment when it got worse.

My Oncologist told me the Oxy was the drug that killed the cancer, so I battled on with the same dosage as when I started. I really wasn't told of the long term effects. In a way, I'm glad I wasn't as I'll take any top-up percentage I can get for being here today.

About 4 weeks after I finished my 12th chemo, my neuropathy worsened, and became a daily part of my life. At the moment, my fingers tingle, but they have improved, and my feet feel like sandpaper. When I put my feet in water, it feels like putting them in snow.

When I exercise, at the end of the hour, my feet can cramp up. I've found massaging them helps, and I try to get my martial arts buddies to help (to no avail). I box quite a bit, and I think exercising my fingers and hands have helped too.

Now the weather is cooling, I can feel some pain in my feet, but I know I can keep them warm, and that will pass. I have heard the usual time for neuropathy effects is 6 months, but some nerve endings are permanently damaged. Small price to pay in my books.

CM xxx

I have permanent nerve damage as a direct result of chemo. I am thinking that it is a pretty small price to pay to get to stay alive..I am not saying that it does not suck to have my hands not work as well as they used to, being a bartender by trade the whole hands not working right and dropping things all the time means that I have to find a new line of work. I also have pain, tingling, burning, numbness and pins/needles in my hands and feet so walking has become difficult at times..I am working on getting the symptoms under control with a couple of different docs right now.

I have hope that I will get the symptoms under control so that I can finally return to work. I am going to have to go back to school so that I can choose a new career path. One that I can work with at my pace. I know that they can reduce the amount of Oxaliplatin so that the side effects are not as severe during your treatments..Have you discussed this with your Onco doc? I was also put on a drug called Neurontin or Gabapentin for the neuropathy side effects and it did help. Maybe your onco doc can help you that way..The beni's far out way the problems when you think about it..I am willing to keep trying to fix what is wrong now than not having the opportunity to try at all...Keep the faith..Kim

Thanks CM & KC for your replies. I felt my neuropathy the night of my very first chemo treatment, just like CM. It has gotten worse but is still bearable. They did reduce all 3 of my drugs after the 2nd treatment, so my last treatment (3rd) my side effects are much better. I will stay at this dosage as long as I can, but if my neuropathy gets a lot worse I may stop the Oxi. at some point. This will be a very tough decision for me. You two have been through a lot with your cancer journey and yet you both are so brave and have come through it in pretty good shape. I pray that you both will be completely healed very soon.

Becky, Thanks so much for your tip about the calcium and magnesium drip, I will ask my Dr about it. gg

When I was still having problems with neuropathy I spoke to a specialist nurse who told me about a trial that one of the UK hospitals was running, I didn't do the trial but I looked into it and from memory the treatment was basically high dose B vitamins, but you should double check before trying it.

Mark, thanks for the tip, I will ask about it.