topic Re: peripheral neuropathy in Living with and beyond cancer

peripheral neuropathy

samex — Sat, 05 Sep 2009 06:59:44 GMT

Has anyone experienced the neuropathy associated with (in my case) oxalipalitan? Bowel cancer treatment I am 18 months out of treatment but still have numb toes (especially when I walk or do yoga)and my hands have the same symptoms as carpal tunnel. I feel that the alternative to these side effects is of course much less desirable but I was wondering about how others have experienced and/or dealt with this side effect. Samex

Re: peripheral neuropathy

Ianvs — Wed, 23 May 2012 06:25:29 GMT

Hi Samex it has been 2 years since you posted here , do you still have the neuropathy symptoms , I too have numb feet and sometimes my hands , I did the chemo for bowel cancer about 2 years ago now , while the neuropathy is bearable in the morning of each day it gets more painful as the day goes on until I get to sleep, it would seem that the areas are slowly regenerating the damaged nerves , well maybe its hard to tell . Ianvs

Re: peripheral neuropathy

elspee — Wed, 23 May 2012 07:12:37 GMT

Same here lanv it does not seem to be much better the soles of my feet are the worst.

Re: peripheral neuropathy

Ianvs — Wed, 23 May 2012 07:25:56 GMT

Hi elspee I would like to find out if others get any reactions from food and other drugs we are on . I believe the blood pressure (Micardis plus 80 mg) pills make the symptoms worse but my GP doesn't think so. also salt and apples ( the acid ) seem to make it worse I don't know of any studies of this Ianvs

Re: peripheral neuropathy

elspee — Wed, 23 May 2012 08:03:13 GMT

Gday Lanvs I have not noticed much reaction to food or drugs but some days are worse than others. I use salt as i have an iliostomy and can loose minerals ect.i also take blood pressure meds.

Re: peripheral neuropathy

Ron50 — Thu, 19 Jul 2012 11:54:41 GMT

Hi, I am a colon ca survivor but I did not have any of the later chemo drugs. I had an old regime of 5Fu and levamisole. It did not cause neuropathy at the time of chemo. My neuropathy started nearly eight years after chemo and has gradually gotten worse. It now effects both feet and lower legs and my left hand. I have tried most of the standard treatments,lyrica,neurontin,endep and even morphine patches. Nothing has had any effect on it but I have had a heap of side effects from all of the drugs. Now all I do is take panadol osteo,celebrex ,micardis plus,zircol and supplements like fish oil and vit d3. Mostly I just try to ignore the pain and burning and get on with life. Unfortunately I have a range of other auto-immune problems including psoriatic arthritis ,alkylysing sponddylitis, and protein urea from an as yet undiagnosed disease attacking my kidneys. The up side is that I have had no sign of ca returning after fifteen and a half years. Orig ca was dukes c into six of thirteen nodes. Best of luck with the neuropathy,if I find anything that helps I will let you know,Ron.

Re: peripheral neuropathy

samex — Sat, 11 Aug 2012 10:31:39 GMT

Hi guys, just saw that this had some new posts. i still have problems with my hands -mainly my left and the ends of my fingers and my feet. My hands go numb in bed at night - compltely numb! Hence interrupted sleep. My feet are Ok but the more exercise I do the more numb my feet/toes become and high heels are a thing of the past! I am 5 years out from diagnosis in 2 weeks and my oncologist thinks that this level of neuropathy is what I'm stuck with. If this is all I have to deal with , then so be it. As I have said before, at least I am around to feel the discomfort! lanvs, it porbably took 3 years for mine to get to where it is now and my understanding is that with al cancer treatments, everyone's reaction is different. I can recommend ecco shoes! Expensive but they work. S

Re: peripheral neuropathy

Ron50 — Sat, 13 Oct 2012 13:33:29 GMT

Hi, For years I was unable to find out much about one of the chemo drugs I was on,namely levamisole. I have now found that it was banned in the US in the early 2000's because of fatal side effects. Odly enough there is now plenty of information availible about it. Seems that levamisole is now the substance of choice for drug dealers to cut their cocaine. Cocaine addicts are now turning up at es's with serious side effects not from the cocaine but from the levamisole. I suspect that It may be the cause of my neuropathy,kidney and other auto-immune problems.Ron.

Re: peripheral neuropathy

Jules2 — Sat, 13 Oct 2012 21:39:21 GMT

I have read that some people have had some good results with having acupuncture. I am considering having some acupuncture for some of my side effects. At least its a non invasive way to try and remedy a problem. Julie

Re: peripheral neuropathy

Ron50 — Sun, 14 Oct 2012 00:14:26 GMT

Hi Julie, I had several hits of dry needling on the trigger points down my spine to try to ease the pain in my lower back. Unfortunately it did not help and the physio doing it said if it hasn't worked by now it probably won't. Ron.

Re: peripheral neuropathy

Jules2 — Sun, 14 Oct 2012 00:18:04 GMT

Hi Ron Shame it didn't work for you. I am somewhat hopeful in my case it will be ok. It is to get some saliva happening again, or at least try for some. On a visit to the dentist he actually pushed rather hard on this particular spot and I had saliva for a short time. I can do that myself but am hoping that acupuncture might just stimulate it to work a little bit better than it currently does. :) Might be worth a try at least :) Julie

Re: peripheral neuropathy

Ron50 — Sun, 14 Oct 2012 04:45:29 GMT

Certainly worth a go Julie. Best of luck with it ,I haope it works for you,Ron.

Re: peripheral neuropathy

Jules2 — Sun, 14 Oct 2012 05:56:21 GMT

Thanks Ron, can't hurt to try I reckon 🙂

Re: peripheral neuropathy

Ianvs — Sun, 14 Oct 2012 06:51:32 GMT

Hi jules2 and Ron I have tried both acupuncture and massage therapy but didn't get much relief It would also seem that any pain killing creams work on the installation cells that we no longer have I think the princes that could feel the pea through 10 mattresses had the same thing in her back as we have Hope it's not to bad or at least sometimes Ian

Re: peripheral neuropathy

Jules2 — Sun, 14 Oct 2012 06:56:58 GMT

Hi Ian Hope yours isn't too bad either!! It can make life difficult and impact greatly in such a way as to make the new normal vastly different from what was previously normal. Julie

Re: peripheral neuropathy

Rescue — Fri, 26 Oct 2012 04:21:50 GMT

Just looking at what you're describing, your symptoms seem identical to those that I am having but mine is a definite cervical spine issue so it may be worthwhile having regular anatomical causes ruled out before blaming the treatment. I could be way of the mark but it seems to coincidental BTW the initial treatment for my problem was Endep with the advice that it may make me drowsy... well all the side effects worked but none of the desired....

Re: peripheral neuropathy

VLASTA — Fri, 02 Nov 2012 06:11:39 GMT

Hi everyone, haven't been on the forum for quite long time and now look, we are done with cancer (fingers cross, I'm 13 months after)and there's been neuropathy to deal with :( My oncologist put me on Gabapentin couple weeks ago but I stopped taking them few days ago. I did not feel any difference to my pain and burning in my feet but made me drowsy and who knows what else on long track 😞 and after reading your experiences I'm even more sure that I'm not going to take anything else... Keeping still and warm does the best for my feet but there is no way to be still all the time and warm 'just right' either. So????? Wish you all best of luck with all...

Re: peripheral neuropathy

Ianvs — Mon, 21 Oct 2013 05:45:59 GMT

Bamboo Socks ! I found a store that sells bamboo socks in hurstbridge VIC and they are the most comfortable socks I have , I now have three pairs and at $10 each they are not to expensive . If you cant find an outlet near you the shop is called working clobber www.workinclobber.elocal.com.au they maybe available on line . Try here http://www.bamboovillage.com.au/ Also I use Difflam extra strength gel on my feet a few times each day , it doesn't stop the nerve pain but it helps with reducing any pain in the areas close to damaged areas which helps a bit when I have to wear shoes all day at work .

Re: peripheral neuropathy

Ron50 — Mon, 21 Oct 2013 21:18:31 GMT

I had a particularly bad flare whilst taking methotrexate for arthritis and kidney disease. I went to my rheumatologist and he checked his records. I reported similar problems the first time I was on mtx. He sent me to a neurologist who did nerve conductivity tests. He dxed moderate to severe sensori-motor peripheral neuropathy. He could give me no cause or any help for it. Ron.

Re: peripheral neuropathy

Lollylaw — Mon, 30 Dec 2013 04:04:45 GMT

Yes i am experiencing it very badly. I finished oxaliplatin august 2012 and still have it badly. I tried a mild dose of a drug called I think neurontin but not much help and then Lyrica which did help but had bad side effects and I stopped. I find walking very tiring and gives me back ache and also muscle aches in my arms. Am going to a neuropathy specialist to see what else there is.