CancerCompass message board discussion started by Biscuit on 2/1/2005 http://www.cancercompass.com/message-board/message/all,1529,0.htm Fri, 10 Oct 2008 00:00:00 GMT Fri, 10 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have terrible neuropathy in my feet and legs from Oxaliplatin. I can no longer continue with treatment. Neurontin doesn't help me. I have pain and numbness that stops me from living. Has anyone dealt with this terrible conditon? Biscuit Tue, 01 Feb 2005 00:00:00 GMT Dear sandra, i have the same problem, try having someone rub your feet and then put on hot socks from the dryer. i also put a heating pad under my feet in my bed. mine ache and this helps me get to sleep suanned Suanned Thu, 10 Feb 2005 00:00:00 GMT Dear Suanne D. Thank you for telling me about what helps you. I'm also on Neurontin for nerves. It hasn't helped much yet. Need to see a Vascular doctor for the terrible veins in my right foot caused from chemo damage. I have stopped all chemo and am currenly only on Avastin. Thank you again. Sandy Biscuit Sat, 12 Feb 2005 00:00:00 GMT Too bad no one told you about the treatment (suggested by Oxaliplatin or Eloxatin's manufacturer, Sanofi-Aventis) to reduce side effects such as neuropathy and cold sensitivity. The treatment consists of 1000 mg. Calcium Gluconate and 1000 mg. Magnesium Sulfate both before and after your Oxaliplatin infusion. At first, it didnt' seem to make much of a differance for me. After the second treatment, I noticed significant improvement. I'm told by my various nurses that improvement is cumulative. I believe in being informed. I learned of this particular treatment from a guest physician at an "I Can Cope" class put on by the American Cancer Society. By the way, this is the class from which I learned the most. I was the one who took the information to my physician and requested this treatment to reduce side effects. Sanofi-Aventis said that they sent a flyer recently to all prescribing oncologists about this treatment, but I had to ask for it. If Oxaliplatin is really not for you, look into FOLFIRI as a treatment option, that is if you are using 5FU currently. John456 Tue, 19 Apr 2005 00:00:00 GMT Thank you so much John. I believe in keeping informed as well. I even have a son in medical school as well. He thinks Oxaliplatin is wonderful and never told me about the calcium and magnesium treatment. I also had a doctor who twice gave me the drug when my blood was too low. He did not look at the blood report before signing his consent for treatment. Do you have any ideas for me now? What do you think? Sandra Biscuit Wed, 20 Apr 2005 00:00:00 GMT I took 10 cycles of oxaliplatin and discontinued due to numbness in fingers- I am a dental hygienist! I was unaware of any preventive treatment possibilities as John mentioned but after the chronic cumulative effects set in, I did research on internet sites about that and found various treatment options that looked promising, but they were PREVENTIVE, not post-therapy treatments. It has been 9 months since my last Ox. treatment and I have hoped symptoms would subside- and they did from the worst that I experienced the first 2 months or so after discontinuing Ox.( the symptoms worsened AFTER treatment ended)- the symptoms I'd say are about 15% less of the initial worst of it- jittery-ness, dropping things.. but swelling and achyness, numbness have remained... I have decided to wait one full year and then look for treatment options and evaluate benefits of them... I am aware neurontin and tegretol have drowsy symptoms which I don't need.... but I have not received any advice from my oncologist, hardly any comment actually when I have remarked on symptoms... also at bend of neck it feels strained and nasal passages are stuffy. All this I can live with but would love relief if reasonably. I am curious if there's anyone out there who has been out of treatment awhile and their symptoms, treatment researches... wondering how long you were in treatment? stage of cancer? age? I am 42, and my colon cancer was stage 3. I am glad to recieve any info, as it is hard to find on neuro damage of the chronic kind, as even this message board took me awhile to find....I am on my own since my oncologist seems uninterested, I am wondering if he has seen others in much worse shape and my case seems mild to him...I am 15 months post diagnosis, surgery and last Fl/leucovorin was Sept. 04... so I'm doing well so far ... I am looking into genetic factor- having my blood tested for genetic flaws, and would love ongoing help w/ neuro problems as available.... thanks to anyone who wants to respond! Yrfriend Thu, 19 May 2005 00:00:00 GMT Hello yrfriend, I am a 65 yr old woman who had folfox treatment from Aug 2004 to Feb 2005. I have mild neuropthy in feet and hands. The feet sometimes get so cold that nothing I do warms them up. My worse side affect from oxaliplatin is pulmonary fibrosis. That starts with a dry cough, which my oncologist said had nothing to do with the chemo. That was not true!! This disease can spread thru out the lungs causing death to the patient. I have been seeing a doctor at Pennsylvania Hospital and will be going to the University of Pennsylvania for a second opinion. I am on oxygen 24/7 and can do very little for myself. I have found, on the internet, that only 1% of oxaliplatin patients get the fibrosis. Does anyone else out there have this disease??? Any response would be appreciated. Barbara 119 Wed, 08 Jun 2005 00:00:00 GMT Hi Barbara? I'm not looking at the message you replied from mine...so already forgot your name...anyway I can't offer any advice on your pulmonary fibrosis but I am glad you brought it up sometimes I wonder if maybe there are things that are going on possibly inside me that aren't very obvious or may become a problem later like breathing. I wonder if maybe I could have a mild fibrosis & not notice it and maybe someday I get pneumonia or something and I don't heal as well...just wondering not worrying. I just can't help but think there are prob. some things going on inside we don't know and aren't being checked for...so I just appreciate you calling attention to it and I feel anyone taking Ox. should at least be alert to the possibility of minor things maybe lurking, make doctor aware of at exam time. I looked up Oxaliplatin in a PDR - "Physician's Desk Reference" which every doctor and dentist has on their shelves, and there were like 11 pages on oxaliplatin, very scientific, but a doctor can navigate all that that is over anyone's head...not to cause alarm but it is good to know all facts and percentages of having some of this stuff. I was one of the first in my area to take Ox & there are no long term studies yet on we who are taking it at this regimen so I think even the Oncologists are learning what really tends to be the side effects of it...mine does downplay mine as I said, and maybe he's just glad I haven't had the worse stuff like you. I'll pray you find treatment if that's possible and for God to restore your health...that's all we all can do...and stay informed! take care- yrfriend2 Yrfriend Tue, 21 Jun 2005 00:00:00 GMT Dear Natalie B. I had a stage 3 adenocarcinoma tumor in my lower colon, surgically removed. I am now 61 years old. There are no indications to date of any reoccurrence. Post surgery, I completed 12 cycles of the FolFox 4 Regime [oxaliplatin, with 5- FU with leucovorin 48 hr. infusion drip] The oxaliplatin was discontinued on the twelfth cycle . Chemo treatments ended early March 2004. At 16-17 months post treatment, as best phrased, there has been an almost imperceptible improvement of the chronic neuropathy that developed post-treatment. In particular, neuropathy developed in the fingers and palm heels of both hands with a glove effect extending to the wrist, and in both feet with a stocking effect extending to the knee, worse in right leg. I experience difficulties in maintaining balance from side-to- side, but not heel to toe. Your post-treatment achiness and neck stiffness symptoms also coincide with those I continue to experience. I even experienced for a time, Lhermitte's sign (an electric sensation experienced with flexing of the neck) (considered rare) I am currently experiencing wrist, elbow stiffness and shoulder position discomfort in both arms. Both knees also ache if held in one position too long. (However, I am not able to differentiate ankle ache from the general neuropathic sensations that developed and currently persist.) All of the involved joints also generate pain upon initial movement that subsides with continued motion. Sleeping is a problem. I am investigating with physicians other possibilities for the onset of the joint pain, but because it is symmetrical and associated with my limbs I suspect it relates to neuropathic consequences of the Oxaliplatin therapy. I do not have any swelling or redness indicating any irritation of the joint membranes. I am forwarding and Article entitled "Oxaliplatin- Associated Neuropathy: A Review" by Robert J Cersosimo, Ann Pharmacother 2005;39:128-35, to you. Good luck in your investigation and keep me posted. Davide Mon, 25 Jul 2005 00:00:00 GMT Hello Yrfriend (Natalie B?), I was glad to come across this forum since I also searched in vain to find discussions of oxaliplatin induced neuropathy. I had stage 3 resected colon cancer, followed by 12 cycles of FOLFOX4. Several times the time between cycles was extended because of low blood values. However, I was getting worse and worse chronic peripheral neuropathy to the point of what is called level 3 (affect daily living). My oncologist felt it better to "tough it out" and finish the cycles rather than back off the dose or stop. I agreed but in retrospect, I wonder if this caused the high degree of chronic neuropathy I suffer now. At first I took clonazepamum (may not be avail. in US, trade name Rivotril, an anti-seizure drug) which worked well. Still I had to increase the dose steadily for 4 months after my chemo ended. Then I thought things were improving for a few months since I could decrease the dose but this was a fake improvement due to the extremely long-lasting effect of the medicine. I soon found things getting very bad and had to up the dose again. Then after about 6-8 months post chemo, the neuropathy "changed" in terms of sensations from moving pinpricks (hands and feet) to a more steady tingling. The Rivotril no longer completely masked this sensation which quickly became maddening and intolerable. I tried Neurontin which didnt work until I was at a fairly high dose (4 x 300mg per day). I am now 15 months post chemo and am up to 4 x 500mg per day and with more discomfort than before. Thus I can attest to having an increasing degree of discomfort beyond 1 year after end of chemo. I too have searched the internet for more info and for possible things to try to "get better" but we long-term oxaliplatin neuropathy sufferers seem to be too few for anyone to take us seriously. I seem to be lucky in that the two medications I am taking do not have serious side effects yet, although I am experiencing occasional nausea from my morning dose of Neurontin. I am barely able to work normally (I have to sit down and rest a lot). I cannot do any of the activities I enjoyed before (running, biking, hiking). In fact anything that increases my heart rate (walking upstairs) also increases the effects of the neuropathy to the point of intolerable annoyance or pain. What little info I could find, as well as from my oncologist and neurologist, seems to indicate that although the damage is in principle repairable, in some people the repair doesnt occur or only occurs partially. I was told that if it doesnt improve after 2-3 years, it is probably permanent. So, we still have a chance but given the direction mine is going, I am doubtful. Thats my story and I hope that there might be some chemo induced neuropathy sufferers out there that have even longer duration information for us as it would improve my morale if I learn that someone had a similar case that got better, even if it took 3 years! I hope your neuropathy is going in the right direction but if it get unmanageable, I would ask to try Neurotin and/or one of the anti-seizure drugs which sometimes are effective for neuropathy. It doesnt hurt to also take the usual vitamin supplements well known for nerve problems (basically all the B complex, especially B12). That about all I can recommend. If Davide happens to read this, I would appreciate also receiving the Cersosimo article. Akhcern Tue, 04 Oct 2005 00:00:00 GMT HI- I appreciate you sharing your experience even though we still "grope in the dark"... I am curious where your live- not in US? I haven't tried neurontin or other drug's because I CAN tolerate the achy-tingling and swollen feelings... it is incomfortable, but not intolerable, and if the drugs only mask the sensations for the time being, not actually reduce the symptoms, then why bother.... I did try anti-inflammatory in high dose for awhile but could tell no difference. I don't regret taking the Ox. but do wonder if I shouldn't have spoken up a little earlier and gotten off of it a dose or 2 earlier than I did... but overall I count my blessings of being alive and not having WORSE symptoms from the Ox. as I have heard... I can breathe and I get up everyday... I am sorry you're having such a struggle! I do still have radiating tingling in fingertips especially, and I can feel it up my legs.. It's been 13 months post-chemo and I can tell no improvement since side-effects "settled in" - as they were worse for a couple months immediately following treatment. I am hoping but not really looking for it to get much better either! I do still want to see from time to time if discoveries are made or any therapy actually helps to diminish all this.. my neck bothers me more than anything as it is more stiff and strained feeling all the time, as if I have held my head at a strained position for along time...it's worse when I look down, and that's like most of the time- I clean teeth, have to look down, it's kind of a strain to always hold every book at eye level etc... I've thought of going to a chiropractor and seeing if they have any suggestions... anyway, this is long enough, I haven't checked on here in a long time and am going to respond to another message also on this.. I guess let's hope for long life, and that others may learn from our treatments.. I would have like to have known more myself, but still making those decisions is hard when it's all new territory for the patient and so many different effects on individuals... I do really hope the calcium/mg. treatments are being done for current or future patients... progress may be at a snail's pace for the oncologists who make these decisions I fear !! Blessings to you, and I would be happy to hear from you as time passes... take care! Natalie B. Yrfriend Fri, 07 Oct 2005 00:00:00 GMT HI Davide- sorry so long in responding... I don't really get on the computer much- I am a busy mother etc.... anyway, I was wanting to tell you that I also had/have the Lhermitte's sign, didn't know anyone else knew the term, the reaction was noticed during chemo, a friend of mine would mention it also, and at first we called it a "wave" or shock going thru our whole body, but we didn't know at first what caused it, we'd be sittin taking our chemo, and there it was.. but later I realized it was any time I looked down/bent the neck... that reaction itself is gone, but if I go quickly down steps or am running while looking down, I again feel the "shock" at my neck,... so it transformed from the initial "Lh-'s sign", to a general stiffness and strained feeling that is constant, and it always feel like I must not be holding my neck right, as if I am straining it in an awkward position,... I tell myself to watch my posture, but I do look down alot which feels the worst, while cleaning teeth, reading,paying bills etc... sigh.. oh well, have to adapt best as we can!! I am still looking into possible therapies, my neck bothers me more than the achy feelings in my fingers and the tingling in feet,and my feet swell, have to tie shoes loosely.. I don't expect it to get much better but still am open.. I just responded to another fellow on this, so you may be reading some of this twice, so I won't go into every detail.. I got my infusaport surgically removed last month, and now may try some massage therapy, I do wonder about some light dose of muscle relaxer helping- I know full doses can make you sleepy,- I DON'T need that! I am in general needing more sleep than I used to and my joints (chemo induced arthritis) ache also, but it is tolerable,.. sometimes I forget what it was like to feel normal! But overall, I (we) should be thankful we are alive and that the cancer didn't progress to Stage 4, which is very difficult to conquer... I am starting on aspirin more regularly now, in case that may help w/ circulation... unsure of dose, doing 81 for now, just started that after port-surgery, just in case.. I know my circulation is not what it used to be, I can swell if pressure is put on hands or feet or legs...I wish you well, and would be happy to hear from you also or anyone from time to time and see if there is further progress..it has been 13 months post chemo now...blessings to you! Natalie B Yrfriend Fri, 07 Oct 2005 00:00:00 GMT HI- glad you responded to me... I do appreciate your advice and tips- but I don't want to take any drugs if it's going to be never ending- if it doesn't really help improve it all.. I am living with it ok, but it is uncomfortable, not what I'd say is painful, I am pretty tough...!achy, I don't like grasping/squeezing things long, but I have to - I clean teeth and have to put lots of pressure on my fingers/joints, I am glad I can still work really! I was a little jittery first couple months but it "settled in" to achy/some swelling and always tingly... I've responded to 2 others on this site so I won't go into all the same details... but I do thank you for replying to my message, and I thank all others who share on here- it's rare to have anyone to talk to about all this .. by the way- where do you live? I'm not a stalker, just curious what part of the world we're sharing from! I wish you the best- I don't really think the symptoms will get much better, but who knows... we'll see..! Overall, I'm just glad to be alive, I went to several funerals last year, all cancer, 2 were colon, I count myself blessed to have had my cancer reveal itself at stage 3- which it did on it's own, I had a blockage and had hardly any symptoms, and at age 42, they don't test for it... but the blockage caused some sudden symptoms that took me to the doctor- I am just glad I had not progressed to Stage 4! ok- enough from me- I don't get on computer much, but when I do, I can be long in writing!!! Let me hear how you're doing from time to time! Blessings to you! Natalie B. Yrfriend Fri, 07 Oct 2005 00:00:00 GMT Hi Natalie, as you guessed I am not in the US, I am American/French but live in France and was treated in Switzerland (Geneva). The oxaliplatin treatment was developed in France, so there ought to be the most experience here. However, there are few Cancer forums in France so far. Just to provide a bit more info, I am 52 and had a similar experience as you, the tumor caused a complete intestinal blockage so they had to operate and in the biopsy found it was colon cancer (even though it occured in the small intestine just before the junction with the colon). Thus the colonscopy I had a few months before just missed seeing it. I am also glad to be alive but I must say some days are quite hard to get through, the contant tinglings wear me out mentally. I am glad you are able to cope without drugs, I wish I could. I dont have the neck problem you have nor joint problems that Davide reported. Hope to hear from other chemo-induced neuropathy sufferers, although I wish there werent any! Best of luck, Alan H. Akhcern Mon, 10 Oct 2005 00:00:00 GMT Hi Alan, I'm one of the younger members of cancer forums, having ended my 12 Oxaliplatin Cycles 2 month ago and I am living as well in Europe (Germany). Obviously I am developing a neuropathy (hands, feet) which worries me more and more. Thus, last week I went to a neurologist who offered me an antiepileptical drug for treatment. This shocked me. As I worked for long years as a pharma-PR-manager I had also served a neurological enterprise, doing mainly press-features of international congresses. So I am not even pure lay. This lays some years back, but antiepileptical treatment if one isn't epileptical, this seems a bit overdone to me. Especially if this won't cure and just soften aches and symptoms. If one has worked for pharmaceutical enterprises one gets a bit careful and I do not intend to enlarge turnovers, when one just searches for more money-worth indications of a drug. Perhaps my point of view is a bit hard, but I rejected this psychopharmacological therapy. Aren't there alternatives? Please excuse my English, as I am not native. Gaby. Processity Sun, 30 Oct 2005 00:00:00 GMT Hi Gaby, since I'm not a phamacological expert I can't say too much based on a clear knowledge of the subject. However, my understanding of why anti-epileptic drugs are prescribed is because they do relieve or at least reduce the symptoms effectively. From what I read, the Rivotril (anti-epileptic) acts to block or attentuate certain nerve transmissions which is what is needed in the case of PN (peripheral neuropathy) as well as for epilepsy. I have a friend that takes this at low doses (like me) for a nervous problem know as "restless leg symdrome", where your leg moves around (when lying down) outside your control. If you read the uses of Rivotril they include sleep disorders, as a sedative, and against anxiety and panic attacks. I agree that I would not really wish to take this sort of drug unless it was absolutely necessary. I feel this was the case for me as the incessant tingling in my hands and feet made life unbearable. I could literally do nothing except lie down or the effects would drive me insane. After a few months on this drug the PN symptoms changed a bit and the Rivotril no longer was fully effective to reduce the tingling to a manageable level. This is when I tried Neurontin (gabapentin) which at a fairly high dose was effective enough to allow me to have a life which is highly limited but tolerable. I mean by this that I cannot do anything highly active (exercise), which is almost everything I used to love to do (mountain climbing, skiing, running, biking). If I even walk up a few flights of stairs, the PN symptoms increase dramatically. The Neurontin is more typically prescribed for PN and if you read the forums on PN you will find many PN sufferers who use it. The PN I have is not painful but rather highly annoying (it only becomes painful if I walk a lot or if I use my fingers a lot). However, many PN sufferers (especially from diabetes or AIDS) have mild to extreme pain and the Neurontin seems to be effective for that. I would not suggest people use these drugs unless the PN is to the point that one cannot function normally anymore. Note that standard pain relievers did absolutely nothing for my PN. I believe my case is exceptional since the Oxaliplatin side effect studies claimed only 1% of patients had PN to the level of disrupting normal life style after 1 year (its been 1 year and 4 months now). I have searched the web quite a bit to find something that would "cure" the problem but as my neurologist said, the problem is that the platinum in the Oxaliplatin destroyed the myelin of the long sensory nerves. Its up to the body to regenerate this. One should do everything possible to give the body what it needs for nerve regeneration (vitamin B complex). I've seen nothing in the medical literature which can speed up this regeneration. It may be the case that for whatever reason, the body cant regenerate or it takes a very long time or you get only partial healing. My neurologist and oncologist would make no predictions whatsoever for my case, apparently it is totally unpredictable. I hope your PN is more "standard" and will go away after some months. It will be your decision whether to take any drugs. I have read that some improvements in symptoms have been reported by PN sufferers with massages, infra-red treatments, electrical stimulation treatments, lidocaine patches, and many different food supplements (too many to mention). I tried a few supplements but they seemed to make things worse, even at doses which were much lower than prescribed. If you do a web search for peripheral neuropathy you will find some forums with lots of info on things to try. Here is an example: http://brain.hastypastry.net/forums/forumdisplay.php?f=206 What I found was almost none of the PN sufferers in these formum had it from chemo. I think it is because there are so few of us that have PN for a long time like myself. Well, my fingers are getting sore, I've written a book here. Hope some of it is of use. Good luck. Alan. Akhcern Sun, 30 Oct 2005 00:00:00 GMT Dear Alan: Thank you so much for your so detailed answer. It helped me very much. I think you are right. At certain stages these pharmaceuticals may be a relief, as easening pain and one should be grateful for that. Vice versa you are as correct: As long as it is bearable one might wait what time shows. I did a lot of research myself (feeling a bit reminded of my former profession as a PR-Manager Medicine in mainly journalistic fields I even enjoyed it!) and I have to state as well - up to now there are merely no alternatives. However, I'll search on and if I should stumble over something, I'll give you a note. I even felt a bit ashamed reading your answer. Enduring that for such a time and little me, suffering now for 2 month (and having screened studies of Oxaliplatin itself)feels shocked by a neurologist who proposed Pregabalin to me (which seems to be the most effective up to now). It was, because these feet annoye me sometimes terribly up to aches, like you I can't do sports any more as it used to be. (I love swimming in long terms, crossing waters hundreds of meters, and when I do it now, after half an hour I have to stop and even to worry, how to come out of the water with legs like this.) I'm quite young for coron cancer, 47, so this illness hit me right at a spot out of a sporty and, as I had thought, healthy life. I changed nutrician now. Tried vitamin B which induced practically the contrast - things worthened. (Ts.) But I'm still in good mood. Although I had to build it up. You seem to have done as well. Mentalitiy seems to help a lot. For example I hang at the border of the pool, wondering to come up the steps and just tell me "Gaby, you'll just make it, and if not you'll just ask someone to help yourself" and up I step. I intend to pamper my feet and nervs also mentally. "Come on, Loves", I'll say. "Let's walk a bit." Oxaliplatin is a young drug. Who knows, there might be quite some cases later to state - took 18 month, 20, and then all of a sudden neuropathy declined. Also in your case. I keep my fingers crossed for yourself and myself. Greetings to France!(Lived in Nice for a while, I like this country.) So thanks once more, incredible how you many words you were giving, every sentence a message. I'll message back when news occurs. A Roche-manager promised to search and he'll give me notice and I await news from a very reliable source of alternative medicine. Gabriele Processity Thu, 03 Nov 2005 00:00:00 GMT Hello all - I've just discovered this website and have read all of the posted messages. I am 42 and have just completed tx for stage 4 colon cancer (12 rounds oxaliplatin). I am one-month post tx and have just gotten the fabulous "cancer free results" from a PET scan so, on many levels, I am rejoicing. However, the neuropathy that I experienced during chemo has actually worsened since the treatment ended, and I went searching on the internet for info. Can't say that I find it all very promising (!) but am still hoping for the best. My oncologist has recommended B-6 vitamins - was wondering what any of you might know about B6 and B12, as well. Also, in addition to the extreme tingly sensation in my fingertips, I have recently found myself losing my balance from time to time. Nothing debilitating, just annoying and worrisome. Is this something related to the neuropathy? Hope to hear from you - Now that I know that this message board exists, I'll be sure to check it frequently. Blessings to you all - Lindsey. Lindsey42 Wed, 07 Dec 2005 00:00:00 GMT G'day (I am from Australia) all. Like Lindsey I have just discovered this website and have just read all the messages. I probably have the longest experience of all people in this message board so far. I was one of the 2040 people who formed the cohort for the first international trial (known as MOSAIC - you can check this on the web) of oxaliplatin/5-FU/ leuvocorin, aka FOLFOX-4. That was from January to June 2000. I remain under scrutiny with MOSAIC although it is now 6 years since the operation (Hartmann procedure) and I continue in remission. In 2000 I had 12 straight fortnightly cycles of FOLOFOX-4 treatment and seemed to get through them quite well. I even made short work trips between cycles to places near to Australia in the South Pacific. During the treatment I had the usual problems with tingling toes and fingers, mouth ulcers... In July 2000 I had an operation which reversed the Harmann procedure and life appeared to return to normal. But about 3 months later I started to experience the symptoms of full-blown peripheral neuropathy, as so many of you have described them. It affects my toes and feet, extending up my ankles and sometimes reaching my knees. I have not had too much pain in my hands, but I am clumsier than I used to be, even allowing for the fact that I am 69. I also have degenerative osteo-arthritis, mainly in the lower back and knees. When the two are active together they "sing" in devilish unison. Getting enough sleep is always a problem. I tried anti-convulsants to get sleep but that did little for me. Other pain killers did little. My next step will be to perhaps try Amitriptyline (brand names here are Endep or Elavil) which, as well as being a treatment for depression, is also a sedative, and is useful for patients with insomnia, restlessness, and nervousness. It has also been found to be helpful for treating fibromyalgia and symptoms related to chronic pain. In 2001 oncologists and neurologists seemed to know little about oxaliplatin and PN - I was actually told that I was the only person in the global MOSAIC experiment who had these symptoms and they must therefore be caused by alcohol abuse (I had worked in the media worked for many years and had once been a "moderate", even heavy, drinker at times)! Sadly a low alcohol regime has done little or nothing to help and the myelin sheathing is just as damaged as ever it was. I recently recognised that I could not put in a full day's work effectively and so I have retired. Well, more or less "retired" as I am now a volunteer with some ten community, state and national cancer institutions. The important thing about this kind of work is that I can work at my own pace and usually catch a power nap with it gets tough. So - THE BAD NEWS FOR ALL OF YOU IS THAT AFTER MORE THAN FIVE YEARS MY PN HAS NOT IMPROVED VERY MUCH. I am resigned to living with it as best I can for the rest of my life. I am trying to keep my general state of well being as high as possible. I now have a well balanced diet and have lost some, but not yet enough, weight. I take mainly Glucosamine Sulphate and Omega-3 fish oil (with clinician approval) to keep my arthritis in check. I am taking mega vitamin B for the PN - that's all. I massage my feet and exercise for about an hour every day - some flexibility and strengthening exercises and as much, and then a little more, walking as my feet will allow without giving me hell. When that happens I have a mini cycling machine which is boring but helps by lowering the impact on my feet and legs. (I have obtained some useful exercises from the (US) Neuropathy Association and from the Washington State University (Seattle?) web site.) I wear shoes as seldom as possible; sandals whenever possible. Problems? Occasional bouts of (mild?) depression and periods of inertia - doing nothing when I know there is lots I can do. Finding somebody who knows the problems and can communicate (I have helped form a cancer patient-to-patient network at the hospital where I am treated - talking with patients in the chemotherapy ward helps me as much as them, I think). And most of all, just living through the periods of pain and discomfort. Reading this message board has made me realise that there are people who are having a much worse time that I am. I wish I could give you more comfort, but I am afraid that it is likely to be a long road ahead for most if us. Best wishes...........John John66 Wed, 14 Dec 2005 00:00:00 GMT Hello Lindsey, I am am sorry to say, welcome to the club. You can read my history in previous posts so I wont repeat here. I will reply to your questions: B6 and B12 and in fact nearly all B vitamins are fairly important to the nervous system. A lack of one or more of them could result in nerve damage or inability to heal nerve damage. The most critical from what I've read is B12, without this you can get PN. However, it is very rare to have B12 deficiency. I take general vitamin supplements (it covers nearly all vitamins) just to make sure I get enough although the doctors say if you eat a well balanced diet, there should be no problem. Concerning your loss of balance, I had this too at the begining (the start of post-chemo PN) and I believe it is due to the lack of feedback from your feet to tell your brain whether or not you are losing your balance. I noticed it happened mostly when my eyes were closed. When I was looking, my eyes compensated this loss and I didnt have the problem. It was most dangerous when washing my hair in the shower! Surprisingly, this got much better with time, either my brain got used to the scrambled info from my feet or my feet sensitivity improved. I suspect both. I can attest that my finger sensitivity improved since the early stages of PN. It used to be I could not button things or even determine what I was touching. Now I can, although with difficulty. However, the bad side is the annoying feelings (tinglings) has gotten much worse since the early times. It started out that I didnt need any meds for tolerating the tinglings, but I slowly needed more and more just to stay sane. I am afraid after 1.5 years since end of chemo, I am still requiring higher doses to cope. It has plateaued somewhat but it has definitely not improved. I hope you are part of the majority (99%) of people whose PN goes away or at least becomes much less bothersome after 1 year. I am in the unlucky 1%. Best of luck to you. -alan. Akhcern Sat, 24 Dec 2005 00:00:00 GMT Hello John, I have been wondering if someone from the trials or early usage would write in one of these forums, since it seemed like so few of us with the Folfox treatment have longterm PN. I appreciated hearing your history even though the PN outcome is not positive. I was afraid this might be the case. Its pretty sad that the guys running the Mosaic study didnt take your PN very seriously. I know that Sanofi (the drug-maker) is taking it seriously now since they are doing studies on counter-drugs to prevent the PN side-effects of oxaliplatin. Unfortunately, they are not doing much for those of us that have it already. I suspect the number of PN longterm suffers may be higher than they claim but you can never be sure they are giving the real statistics. I also heard they are now looking at whether 10 cycles is enough since much of the worst PN comes from the last cycles. I wish I could suggest something to help your (and my) PN but I already wrote all the things I have tried. I am still on a combo of Rivotril (clonezapam) and Neurontin (gabapentin) which is just barely adequate to keep things tolerable. I keep thinking its just for a year or so and I'll be back to normal, but its been 1.5 yrs and its worse than ever so I am beginning to realize this may be forever. It will be hard to give up so many activities that used to be so important in my life. Maybe something will come along that will help us eventually. Good luck to you. Hope to hear from more people just to see how they cope and if there are more like us. Regards - alan. Akhcern Sat, 24 Dec 2005 00:00:00 GMT I am going through the 12 cycles of FOLFOX. I already (after the 2nd cycle) have neuropathy lasting more than 7 days. I'm looking for when to stop the Oxaliplatin to get the most possible from it, but avoid permanent neuropathy. From what I've read, the non-recurrence rates for FOLFOX (78%) and 5fu/leuvocorin only (72%) don't seem like enough difference to warrant spending the rest of my life in pain or unable to use my hands. In hindsight, would you have stopped the Oxaliplatin? at what point? (Am I over-reacting??? I am terrified of this!) Thank you for your help! Anonymouse Mon, 26 Dec 2005 00:00:00 GMT Hello anonymouse, yours is a very tough question. I also knew the seemingly small difference in odds between oxaliplatin and no oxaliplatin, as well as the very tiny probablility of long-term PN. What you have to consider is: are you going to be in the 6% who will die because you didnt do the oxal. treatment or the 1% who will get long-term to permanent PN? To me (a scientist), there wasnt a choice, I went with the odds. I wont ever know if the choice was right, if I would have been OK with a reduced or no oxal. treatment. What I read in the treatment protocol for Canada was that they either postpone or stop the oxal. treatment if the PN reaches stage 3 (affects everyday living in a severe way). However, there is no data on the survival rates of those that stopped early (it would be very complicated to use patients not studied in a controlled way). I heard from my oncologist that they are now doing controlled studies on reduced numbers of cycles. So perhaps soon there will be data. I think if I knew for certain that I would get severe PN and it would not go away, I would have opted to stop earlier and hope that 8 to 10 cycles would do the job. However, that was never an option and of course I never suspected that the PN would get so bad and last so long. I am sure I would be not be of this opinion if I stopped early and then had cancer reappear soon thereafter. So, I am afraid I cannot provide an answer. You should also be certain you are talking about PN (tingling or pain in the hands and feet) and not the other neuropathic symptoms associated with oxal. (tight throat, sensitivity to cold, jaw pain or stiffness) which go away fairly rapidly. In my case the PN started only after about 4 cycles and was very mild. After 8 cycles it was much more strong and continuous and began to affect my daily living. At 12 cycles it was strongly affecting my daily living but still not to the point that I need medication to tolerate it. This occurred only about 1 month after end of treatments. If already you are affected strongly and continuously, I would discuss this with your oncologist and also get an opinion from a neurologist who is familiar with PN. As there are alternative treatments that are nearly as effective that dont use oxal., it may be the right choice to drop or switch if it looks like your nervous system is especially sensitive to oxal. like mine was. Thats the best I can suggest. Good luck. -Alan. Akhcern Mon, 26 Dec 2005 00:00:00 GMT The 6% difference is between reoccurance and not, the 5yr survival rate is the same. (NOT that I want reoccurance!) My right leg was tingly-numb for most of 2 days (3 & 4 days after Oxaliplatin). Cold sensitivity (touching objects in fridge) is still with me 7 days after (and counting). What alternatives are there to Oxaliplatin other than 5FU/Leuvocorin? (especially that are as effective?) FOLFOX & 5FU/Leuv are all that the oncologist mentioned. THANK YOU!!! Anonymouse Mon, 26 Dec 2005 00:00:00 GMT Hi again, the alternative drug to oxaliplatin is called irinotecan. Maybe its not considered an alternative in the US but many studies have been done worldwide. Its a little bit less effective than oxal. They had some studies where they switched from oxal to irin because of the neuropathy (an also vice versa). It was difficult for me to determine the effectiveness, not being an expert (I read the presentation given to an international oncology meeting). I assume you had stage 3 colon cancer so are not allowed to go for these new drugs (avastin and erbitux) which seem to do wonders for stage 4 cases. It seems avastin or erbitux + irinotecan is now a standard treatment for stage 4 and avoids the neuropathy problem quite well. Thats what I know. You might do a Google search on standard stage 3 colon cancer treatments. Best of luck, Alan. Akhcern Thu, 29 Dec 2005 00:00:00 GMT Hi Lindsey42! I hope you are still doing well.. I don't get on msg. board much, but wanted to give you a quick response to your question about dizziness and increased symptoms following treatment- It happened that way w/ me also, and that is usually the case I am now reading, but didn't expect it that way at the time my treatment ended, so it was a little surprising for me... but I see your message was from December, so I hope your symptoms may be subsiding some- mine did after 2-3 months. I would get a little dizzy/wobbly if I was going down steps especially, had to be careful,sometimes I really do think I was more forgetful, would have times I'd done something simple and not remember what I'd just done.. little things like where I put stuff...that was hard to prove as that happens w/ everybody sometimes but I did seem to have more puzzling stuff like that , that surprised me, and I had to write more stuff down! BUt do be encouraged, the symptoms do subside , even if they don't go totally away... I would cut myself on knives almost everyday, drop stuff- didn't always grip completely etc... but the worst is the first few months after treatment... let me know how you're doing! I'm 2 yrs. away from my diagnosis- stage 3.. and seem to still be cancer free... hope you're well! Yrfriend Wed, 22 Feb 2006 00:00:00 GMT Hi John- glad to see your message, very informative, thanks on behalf of us all for posting it! I do wonder what stage your colon cancer was? thanks for sharing& be well! Yrfriend Wed, 22 Feb 2006 00:00:00 GMT HI again Lindsey- love your name by the way... the loss of balance issue is called proprioception- it deals w/ your body being aboe to move in space w/out you looking... it's just another one of our senses.. just in case you like knowing these things! My proprio.is much better! bye again Yrfriend Wed, 22 Feb 2006 00:00:00 GMT Hi ! You have a good and understandable question! I guess one question may also have to do w/ what stage yours is...I stopped my Ox. part of FOLFOX after 10 Ox's due to continuing instead of acute neuropathy, though I did notice it after the 9th treatment... yours seems to be early, so it really may differ w/ each person.. just thot I'd share about mine... but even tho my neuropathy is still there after 18 months post- chemo, mine is not that uncomfortable... so you really have to judge for yourself and don't worry about it.. I didn't when I stopped- my onc. made the decision and even tho I thot initially I should do all 12, I really felt at peace stopping and didn't worry about that another second..was glad he made decision for me... so whatever decision you make, it's the best one you can make.. go w/ your gut and don't worry- it's really somewhat of a guessing game for all involved, no clear answers, so you can't expect yourself be sure... just pray about it and let it go..! let us know how you are! Yrfriend Wed, 22 Feb 2006 00:00:00 GMT when my onc. stopped my ox. after 10 cycles, we just finished w/ the 5Fu but stepped up pace to weekly... seemed reasonable to me! Yrfriend Wed, 22 Feb 2006 00:00:00 GMT I just completed Folfox around 5 weeks ago, and I am very discouraged by the Neuropathy. I am curious how you are doing now? I was diagnosed and treated all within the last nine months. I have read alot of postings that indicate that folks are dealing with the neuropathy quite a long time after treatment, and have yet to see any postings of encouragement about it going away any time soon. Pickle Wed, 10 May 2006 00:00:00 GMT I am a "newbie" on the block. I just finished treatment (FOLFOX)about 5 weeks ago. My oncologist did the cal/mag before and after treatment, and it did not prevent the neuropathy from ocurring. (I am very discouraged about what I've been reading; however, by the grace of God, I am very blessed to say that the cancer appears to be gone - it was diagnosed stage 3C, I am 35 years old). I have found that keeping my feet really cold helps prevent the pain from creeping in. I wear sandals mostly. I have found that when my feet and hands get too hot, I experience more numbness, and more pain. I noticed a significant increase in the sensations within about 2 weeks after I finshed chemotherapy, and the symptoms have remained quite the same. I had a buddy, that I meat during treatment, whose neuropathy had completely disappated within about 6 weeks. It sounds like she was very fortunate. I'm guessing those who have not had the same experience that we are having aren't out here looking at the message boards for the same reason we are, so finding encouraging stories may be difficult. Anyway... just wanted to add my thoughts, and hoping for some encouragement. Take care. Pickle Wed, 10 May 2006 00:00:00 GMT Dear Pickle: My last Infusion was two years ago and I still have chronic peripheral neuropathy affecting both my fingertips and feet. The affect has lessened in the fingertips to a degree. I have a base sensation but minimal sensitivity to texture. Hot and cold sensations are present. No "pain." In my feet, the neuropathy is evolving, lessening a little but not symmetrically. For example, I have less sensation on the outsides than on the insides of my feet. The big toes and index toes seem more functional than the three remaining toes. A heating pad at the bottom of the bed at night lessens discomfort. The bottoms of my feet are very sensitive to sharps, so socks are imperative. Shoes must be loose with no pressure on the nerve junctions on the top of each foot. My worry is atrophy of the muscles in the calf that move the toes for affecting balance corrections. I will be exploring a light therapy (near infrared- red) treatment that has achieved some recognition as being successful for diabetics afflicted with peripheral neuropathy in the feet and legs. [See http://www.infraredtherapy.com/ index.html or Google "neuropathy near infrared light therapy."] Notwithstanding, I am of the opinion that alleviation of chronic peripheral neuropathy caused by one of the Oxaliplatin metabolites is a function of entropy, i.e. the inevitable breakdown or randomization of the structural conditions causing the problem (oxalate-Calcium/Magnesium crystals in nerve cell channels) over time, perhaps a long, long time. [See http://en.wikipedia.org/wiki/Oxalate_poisoning] Davide Thu, 11 May 2006 00:00:00 GMT Thanks for your response. I will look into the websites you mentioned. Stay well. Pickle Thu, 11 May 2006 00:00:00 GMT Hi, Natalie. I hope you are doing much better. I wanted to find out how you are doing with your neuropathy today in October 2006. My husband, John, just completed 12 treatments of 5FU/oxaliplatin/leucovorin and a trial drug erbitux on 9/19/2006 for colon cancer stage III. The cold feet and numb fingers really were pronounced after the last treatment (so much that we thought he might have gotten an extra dose of something, it being his last dose), but that was not the case. He flew thru the whole program doing really good, though. No symptoms at all, really. Just some cold sensitivity to having cold drinks or handling cold objects. The weather has now turned colder in Chicago, 30 degrees today, and his fingers really feel numb from the tip up to the first joint. His feet have gotten better but he still wears a couple of pairs of thick socks to bed. He complained a lot about them in the beginning of October. What can he do for his fingers? He is dropping stuff, finding it hard to button stuff. What are your recommendations? Or any one else's please? Thank you, Margaret. Margaretireland Thu, 02 Nov 2006 00:00:00 GMT Margaret, I could imagine your message as being written by me with little variation. I too am searching for help for my husband's severe neuropathy. He is breaking dishes and can't button. The sad thing hs that he is a retired professional magician but still loves doing close-up magic. Something he can no longer do since he can't feel the cards. He, too, just finished chemo and the pain, numbness and tingling in his hands seems to be getting worse. He seems to be having an allergic reaction as well, with heels of his hands itching fiercely and his lips swell. He had diabetic neuropathy before the chemo but it only affected his feet when he was trying to go to sleep. He had given up on Neurontin and was changed to Lyrica. neither helped. After a sleep study he was given Requip which allows him to go to sleep without severe pain and legs jerking every few seconds. Can you or anyone tell me if taking the calcium and magnesium is helpful at this point? Thanks, Ellen (Margaret is my first name) Sugarslg Thu, 02 Nov 2006 00:00:00 GMT Thank you, Ellen, for responding. John has been takin neurontin but it isn't working as of yet. You suggest taking calcium and magnesium. I've heard about taking vitamin B12 - so some things i can look into. I'm hoping it doesn't get worse. So far, he's not complaining that much. Just complains of being cold in the house. I know he has higher tolerance for discomfort than i do. He did say his handwriting has suffered. Margaretireland Thu, 02 Nov 2006 00:00:00 GMT Our husbands seem to be alike in yet another way. Mine is not a complainer either. Sometimes the only way I know he is in pain is a slight movement of his feet. I agree with the B12. At the very least it might give them a bit more energy. I have spent so many hours researching that my mind goes blank. I seem to remember a mention of a drug that, given at the time of the chemo, would lessen the harsh affect. It is too late now that chemo is over but when he asked his oncologist about it he didn't have a clue. He is Canadian where (my observations) money for treatment is used sparingly. He was accepted into a clinical trial 59 days after surgery. He missed several treatments because of low white cell count with no effort to use any of the accepted drugs or treatments to boost production. When he asked about one of the treatments he was told it would cost $3000. Ellen Sugarslg Thu, 02 Nov 2006 00:00:00 GMT Please see my post on this subject. I posted it today 11-30-6. Scip111 Thu, 30 Nov 2006 00:00:00 GMT Finally, I have found others like me.  Perepheral Neuropathy is jacking me around and I'm not happy about it.  I have stage 4 colorectal/liver cancer, 11 treatments over 6 months (FOLFOX4) and currently only on Avastin until July 2007.  The PN got worse toward the end of my Oxaliplatin treatment and my Oncologist cut the doasage on the last two.  After 30 days on neurotin (300mg daily) and no change (it's a mask not a cure), I have begun a quest for relief from this insidious side effect through alternative therapy.  I have had five Anodyne Therapy (Monochromatic Infared Energy) treatments so far, but still no progress.  Nutrients for Neuropathy by John Senneff (www.medpress.com) has been a source for practical, healthy and a natural approach to fighting PN but I'm not very confident as I write this and read other postings from fellow PN sufferers on this website.  Currently doing research into acupuncture and will begin that after seven more laser treatments.  Bikram Yoga has been a source of temporary relief as movement and exercise of any kind seems to relieve the PN syptoms temporarily (for me).  And when I'm not mobile, the pin prick/swollen feeling in the hands, arms, feet, legs, head and neck returns.  For me, activity of any kind brings relief and being dormant causes more pain.  Cold bad, heat good.  Also, I believe you Oncologists out there should be more up front with your patients about PN and how it affects the body.  I was so focused on beating the cancer and digesting chemo info, the PN portion of my doctors speech flew right over my head.  Don't get me wrong, I'm greateful my CT Scans are coming back with no black spots in my inner solar system (so far).  But as a triathlete, outdoor freak and general worshiper of nature, I'm relegated to riding my stationary bike inside my garage due to the pain, balance and mobility issues caused by PN.  Hiking and surfing is out for the moment as well as I try to find a cure for this worthy adversary.  I won't give up until I beat it.  And when I figure out how, you can bet I will be screaming about it from the mountaintop.Fight Like Hell!Greg J.  Cohone 4th@aol.com Sun, 11 Feb 2007 00:00:00 GMT  On 2/1/2005 Biscuit wrote:I have terrible neuropathy in my feet and legs from Oxaliplatin. I can no longer continue with treatment. Neurontin doesn't help me. I have pain and numbness that stops me from living. Has anyone dealt with this terrible conditon? I also had the oxaliplatin and was told that i would have some neuropathy during treatment,but nobody ever told me it would last so long.I finished my chemo 5/06 and the pain in my hands and feet is 24/7.I have seen neurolegists and they say i can only try to manage the pain and gave me methadone,great now i can be in pain and be a junkie too.I did take the pills once and they made me ill for 2 days.I have heard that b12 injections are having some promising results so i suugest you talk to your encologist about doing a b12 workup and see if that is something that may help.At this point i would try anything,but i'll tell you this had i known the neuropathy would be so bad i would have passed on the chemo.....good luck....."Q"   The "q" Fri, 16 Feb 2007 00:00:00 GMT I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally. Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts? Dabblerz Thu, 15 Mar 2007 00:00:00 GMT  On 3/15/2007 Dabblerz wrote:I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally. Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts?  I am lucky to have found this forum. I was searching for info on neuropathy caused by oxaliplatin and found this site. In reply to your post, I am almost nine months post chemo treatments ( I had colorectal cancer, stage 3) and my neuropathy seems to be getting a little worse. The 'tingly feet syndrome' hasn't let up since it began, and my nerve endings feel like tiny needle pricking on occasion. I have been taking extra strength over the counter pain relievers. I may either ask to see my oncologist early  or wait for my scheduled appointment (May 15). Not sure if he can help, as he usually downplays my neuropathy complaints. I am happy to be alive, but  what a painful life. I now get pain and numbness shooting through my arm from my shoulder to my fingertips. May just be arthritis but someone please if you had same do tell. I hope that everything improves for you.  it used to be that I could forget about the pain and tingling if I stayed busy, but now that the arthritis-like pain  has come I am having a pretty bad time.  Good health to all of you here.kenkd. Kenkd Mon, 09 Apr 2007 00:00:00 GMT  On 4/9/2007 Kenkd wrote: On 3/15/2007 Dabblerz wrote:I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally. Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts?  I am lucky to have found this forum. I was searching for info on neuropathy caused by oxaliplatin and found this site. In reply to your post, I am almost nine months post chemo treatments ( I had colorectal cancer, stage 3) and my neuropathy seems to be getting a little worse. The 'tingly feet syndrome' hasn't let up since it began, and my nerve endings feel like tiny needle pricking on occasion. I have been taking extra strength over the counter pain relievers. I may either ask to see my oncologist early  or wait for my scheduled appointment (May 15). Not sure if he can help, as he usually downplays my neuropathy complaints. I am happy to be alive, but  what a painful life. I now get pain and numbness shooting through my arm from my shoulder to my fingertips. May just be arthritis but someone please if you had same do tell. I hope that everything improves for you.  it used to be that I could forget about the pain and tingling if I stayed busy, but now that the arthritis-like pain  has come I am having a pretty bad time.  Good health to all of you here.kenkd. Thanks for commenting on my posting.  I have recently been getting the pains in the joints.  I don't think it is arthritis as I didn't have that before and other people in this forum have had these pains.  It hasn't been too bad, but I am on a pain medication called Hydromet, which I use for other things.  I just try to keep active, which helps.  The pain seems to be getting worse, so we will see what happens.  Stay in touch. Let me know what works.  I haven't seen a neurologist yet.  I will let you know the results when I do.Take care,Ron  Dabblerz Thu, 12 Apr 2007 00:00:00 GMT  On 4/9/2007 Kenkd wrote: On 3/15/2007 Dabblerz wrote:I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally. Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts?  I am lucky to have found this forum. I was searching for info on neuropathy caused by oxaliplatin and found this site. In reply to your post, I am almost nine months post chemo treatments ( I had colorectal cancer, stage 3) and my neuropathy seems to be getting a little worse. The 'tingly feet syndrome' hasn't let up since it began, and my nerve endings feel like tiny needle pricking on occasion. I have been taking extra strength over the counter pain relievers. I may either ask to see my oncologist early  or wait for my scheduled appointment (May 15). Not sure if he can help, as he usually downplays my neuropathy complaints. I am happy to be alive, but  what a painful life. I now get pain and numbness shooting through my arm from my shoulder to my fingertips. May just be arthritis but someone please if you had same do tell. I hope that everything improves for you.  it used to be that I could forget about the pain and tingling if I stayed busy, but now that the arthritis-like pain  has come I am having a pretty bad time.  Good health to all of you here.kenkd.I went through chemo for colon cancer until mid - July 2006.  I was warned of the acute neuropathy that occured during treatment - and indeed experienced the sensitivity to cold (drinks, weather, etc....).  What I wasn't aware of was that neuropathy could continue past treatment. As you have so well described, the neuropathy progressively worsend after treatment.  It moved from cold sensitivity to a general numbness in extremeties.  It started in my fingers and toes and when at it's worst extended above my elbows and knees.  My oncologist was surprised at these results - although my research indicated that this ramp up effect was quite common.  At it's worst, I could not button, zip, and was having some balance/walking issues.  The good news is that it peaked at about 4 months past the final oxaplatin treatment and has reached a manageable level.  At about the 7-8 month mark past chemo it seems to level out.Generally, I find that it is worse when I don't get enough rest or exercise, when it is cold, and when I drink  alcohol. to excess  At the onset of the post-chemo neuropathy, I stopped alcohol alogether at the request of the oncologist and found that it had little effect (except to depress me!).  I visited a neurologist several times and he said that I was lucky - a very mild (his words, not mine) case.  All I do now is try to keep active, rested, eat well, and stay positive.I have a friend who's dad is receiving some new treatment for severe neuropathy that seems to be working well.  I'll find out more and post it later.Best to all.Dave  Davega Wed, 25 Apr 2007 00:00:00 GMT I too have the same effects...1 more cycle after this week will complete the 6 momth progran following sugery for colon cancer..tempory ostomy to be reversed in about 1 1/2 months....looking for info on lifestyle issues following rectum removal and reversal of ileostomy...what is normal following reversal?....frequency of bowel movements, incontenance? other difficulties...Any info will be greatly appreciated...dd don327 Wed, 22 Aug 2007 00:00:00 GMT After reading all of this I can hardly wait to start my folfox treatment in December or January.  I'm just on week four of 5FU continuous and radiation, then surgery then the 6 mos. of Fofox.  Does everybody get the neuropathy?  It sure seems like a lot of people do?  I haven't received any side effects of the 5FU except the tiredness so maybe I won't get the neuropathy. I hope you all get healed!Terry Snowmom60 Wed, 22 Aug 2007 00:00:00 GMT Hi Snowmom60, The neuropathy is cause by oxaliplatin, a substance you are not currently receiving. My father had mild side effects from folfiri (5FU), but progressively bad peripheral neuropathy. His oncologist is considering a break in oxaliplatin for a few months to try to avoid permanent damage. Which brings me to my question to others: what comes after Folfox? Thanks for your posts, you all have become my best source of information! JanieD Sat, 15 Sep 2007 00:00:00 GMT Hi Janie, I'll be getting the oxiplatin along with 5FU and Loucavrin after my surgery.  You asked what's after the foxfire(? is that correct?), in my case that will wrap it up so maybe that's it for your father too.   Your right this site is a great source of info.  Tomorrow is my last radiation treatment, YEAH!!!!! and my 5FU will be DC's Thursday, YEAH!!!! Take care,Terry Snowmom60 Sun, 16 Sep 2007 00:00:00 GMT Hi Terry,I am so hapy to hear you are close to the end of treatments. I hope you get the most boring scan a doctor has ever seen after that!! (I have come to really appreciate when they say -normal aspect of the rectum, liver, lungs, etc...).Considering the pretty scary side effects of the oxaliplatin, we are wondering if my father should go back to folfori (5FU, leucovorin, irinotecan) in combination with Avastin. Folfiri seemed to have lost its power over the cancer, but there was no Avastin in the mix... We are also considering a break in chemo to rest the body, but are wondering if oral 5Fu might be a good "support" chemo for a few months. My father has very little side effects from 5FU so we think it might help maintain the metastases and recurring tumor at a stable size while he gets the needles out of his fingers and feet!Has anyone ever done the oral 5FU as part of a "resting period"?Thanks!Janie  JanieD Mon, 17 Sep 2007 00:00:00 GMT Hi to all of you who have shared on this message board.  This darn neuropathy has certainly got all of us searching the internet.  The main reason I remain interested is because it helps me to know that even though no one seems to take my neuropathy seriously, it is not all in my head.  My oncologist does take it seriously of course, and is a very caring and up to date and proficient caregiver and I hate that there's not much he can do for me.  It's not his fault so I don't complain (much...)  Anyway, I'm 2  1/2 years out from chemo and happy to be here, but still have annoying peripheral neuropathy.  It is always "humming" but only occasionally painful.  I gave neurontin and b vitamins a try but they made no difference.  I am a veterinarian and have lost confidence in my surgical skills so have altered my days to include all the other aspects of practice and schedule surgery with the other vets in the practice.  I was back playing tennis pretty competitively but my balance was a little off...finally this June I stumbled and fell so hard I dislocated my left ankle.  I have spent the last 4 months recovering-surgical repair, cast, crutches, etc. but now am back walking well.  The reason I sought out this message board was because when I mentioned by neuropathy to my orthopedist in terms of whether I could safely risk this bum ankle on the courts again, he just didn't make the connection.  ARGGHH!!  Said I should see a neurologist...Anyway thanks for a place to share.  I don't think I will ever be normal again, but since I was stage III c with thirteen positive nodes I really am grateful for the oxaliplatin.  Let's all stay in touch.  The best advice I have is to eat right, exercise, rest, destress... when I take care of myself the neuropathy is lots easier to tolerate and even milder I think.  Best to all,  Nancy vetmom Mon, 15 Oct 2007 00:00:00 GMT Hi Vetmom, I've been reading or skimming over some of these messages re: neuropathy and it seems that the general conclusion is that there isn't, as yet, any cure or promising treatment for those of us who have this! I guess we can always hope that we're in the group who will eventually be free of the irritating symptoms. I read on another website that 90% of chemo-induced neuropathy eventually goes away, which is certainly encouraging. What I don't know is when that "eventual" time is! I think most everyone also agrees that it's better to have the neuropathy-for awhile at least-than "the other option"!I'm currently taking Lyrica. After the 7-day trial period it seemed(hopeful imagination?)to improve some, maybe 5%, so I figured it was worth continuing. But now, at least a month later, I don't detect anymore improvement, so I'm thinking of stopping the Lyrica.In some of the messages on this board I detected a disinterest on the part of some of the oncologists, which was also the case w/ mine. Maybe disinterest is not the right word, perhaps ignorance is a better one...ignorance of what can/should be done to treat neuropathy. Maybe they should search the web, like we are, to come up w/ some ideas!It's wonderful to know that God does not operate according to human statistics, so I believe we all should be encouraged to know that there is hope for us...the type of hope that makes us trust Him to not only do what is best for us but also to give us the strength, patience...whatever it takes! to go through days and hours of pain and/or discomfort. And He does answer prayer. I know that b/c I am walking proof of that!Nice chatting w/ you and with whoever stopped to take the time to read this. rena53 Thu, 25 Oct 2007 00:00:00 GMT OK, it has been exactly two years since my last oxaliplatin infusion. (I received 11 infusions, stage 3 colon cancer) The neuropathy has not gone away in my feet and legs and still lingers in my hands, although not as severe. My oncologist just shrugs his shoulders when I tell him that the neuropathy is no better. I guess I am one of the 15% of patients who develop permanent neuropathy. I am now 50 years old. Good luck to all. Perhaps some day we will have a less barbaric cure for cancer. jOSEPHj jOSEPHj Mon, 14 Apr 2008 00:00:00 GMT I finished treatments about 16 months (Dec 2006) ago with oxaliplatin.  I'm 54 with stage 3 rectal cancer.  I'm a pharmacist and was aware of the benefits of calcium and magnesium.  I still had neuropathy in my feet, legs, and fingers even after using the calcium and magnesium.  My fingers are good enough to button my shirt, however my feet and legs continue to bother me.   I continue to play sports, including 4.0 tennis.  My problems consist of pain in the bottom of my feet after playing tennis.  They are tender enough for me to hobble when I get up in the morning.  I take some ibuprofen to help with pain and allows me to move around better.  I find doing some excercises with my feet help some.  I have given up on it getting any better.  I too have tried Lyrica but felt the drowsiness was not worth the little or no releif I got from it. Like most other people I do feel fortunate to have no cancer at this time, it just bothers me when I think about the additional problems numb feet can cause me in the future.  I appreciate everyones comments and get some satisfaction reading other's stories and their progress.   Thanks steverj steverj Wed, 16 Apr 2008 00:00:00 GMT Hey- yrfriend2 again... still here after 4 years! Yay- that's the part that matters, even tho I still have same neuropathy.. gotten used to it, and still very cold natured, fingers ache more when cold- early chemo-induced arthritis...  the bend at neck turned out to be 2 herniated discs, which prob. partly due to my job as a dental hygienist, but came soon after chemo ended.... the neuropathy never got any better after the 1st couple months following chemo... like I said, I get used to it.. still annoying, occasionally awkward if I type or write alot etc.. but  it's ok... I'm here, and God is good... life goes on and its better to know we've been given more time! blessings to you all Yrfriend Fri, 18 Apr 2008 00:00:00 GMT  On 4/18/2008 Yrfriend wrote:Hey- yrfriend2 again... still here after 4 years! Yay- that's the part that matters, even tho I still have same neuropathy.. gotten used to it, and still very cold natured, fingers ache more when cold- early chemo-induced arthritis...  the bend at neck turned out to be 2 herniated discs, which prob. partly due to my job as a dental hygienist, but came soon after chemo ended.... the neuropathy never got any better after the 1st couple months following chemo... like I said, I get used to it.. still annoying, occasionally awkward if I type or write alot etc.. but  it's ok... I'm here, and God is good... life goes on and its better to know we've been given more time! blessings to you allYUP YOUR RIGHT!!! I too am here 4 years after being told I only had 3-6 months!!! I have AWFUL pain in my feet!!! I (and my drs) have tried EVERYTHING!! I have finally figured out this probable is what its going to be like forever. After letting"it" get to me (and it still does sometimes!) I decided that at least Im alive and get to see my kids(youngest is now 16) and grandkids(due in Oct) grow up!!(God willing) and if this is the price I have to pay...then ok!! I figure its worth still being alive!!! Maybe one day they will have something for it.Right now Im on low dose methadone and tramadol and it helps me get through the day(not without pain though) But I would do it again,for the same results!! Heidi Heidirose Fri, 18 Apr 2008 00:00:00 GMT VetMom,I just completed a FOLFOX6 regimine on 7/18.  Fingers and feet were constantly 'buzzing' for the last 3 of 12 treatments.  Oncologist said not to worry, everything would be normal after a couple of months after treatment.  Well, I don't see any difference except the buzzing has turned to sensitivity in my fingers such that the tips of them get really sore after an hour or so on the computer.  The buzzing, tingling, and soreness cover any sensitivity to light touches. (I hope no one wants me to hand them a raw egg!)  My feet feel as though i walked barefoot on a gravel bed yesterday.  I'm seeing significant reduction in balance.  Between stumbling around, dropping stuff, and knocking over stuff, I'm beginning to feel like a toddler again!  One other thing, I have slight spinal cord compression at L3,L4, and L5.  According to my neurologist, I could have expected the low-grade pain I was experiencing from that to get worse since all nerves are targets for the platinum and any pre-existing inflamed areas will just get worse.  Give the man a prize!  The lower back/upper leg pain is no longer low-grade!  Recommended treatments;  steroid injections for the lumbar issues and patience for the fingers and feet issues!I've been to the Oxilaplatin manufacturer's web site.  There are several articles that discuss the drug and neuropathy and none of them are very encouraging.  In one study 30% of the participants dropped-out due to neuropathy effects during the study.  One article said neuropathy existing 18 months after final treatment is likely to be permanent.  Further, from the data I saw, the difference in 5-yr survival rates between Oxilaplatin and alternative treatments were not overwhelming.  After the fact I've learned that there are alternative programs with similar results and different side effects.  One is nearly 100% for hair loss and bad for stomach and bowel upsets; that was not explained to me.  I very well may have chosen the alternative if I had known then what I know now.What's done is done.  Praise God for the good results we've had so far, but more discussion of treatment alternatives and the pro's and con's of each would have been nice.Good luck and may God bless  youEd edupnorth Thu, 28 Aug 2008 00:00:00 GMT