CancerCompass message board discussion started by Ron1norma2 on 11/3/2005 http://www.cancercompass.com/message-board/message/all,3377,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi there. My name is Ron. I am 50 years old and live in Denver, Colorado. I had surgery one year ago yesterday to remove a Stage 3 tumor from my descending colon (left side). I endured nine cycles of FOLFOX 6 chemotherapy from mid-Decemeber, 2004 through late-April, 2005. The therapy included Oxaliplatin, 5-FU, and Leucovorin. I had to postpone treatments twice for a week due to low blood counts. I terminated chemo after nine treatments due to complications with a kidney infection. My injections were administered through a Hohn catheter in my upper left chest just below my collar bone. For the first six treatments, my neuropathy would develop immediately after the treatment started but would dissipate almost entirely by the end of the two-week treatment interval. After the sixth chemo, however, my neuropathy was continuous. My oncologist lowered the dose marginally for the remaining cycles. As I said before, I had to stop altogether after nine cycles due to other complications. I am so glad I had to stop because the neuropathy was getting worse. For the next two-three months after stopping chemo, my neuropathey worsened. It was moderate in my hands and fingers(pain scale of 3 out of 10) but was extreme in my feet (8 out of 10). I have tried various treatments to help cope with this incredible bother. I started with Neurontin (one 100mg pill twice per day) and B6 supplements once per day. This had very minimal effect .... almost none. I doubled my Neurontin dosage to two pills, twice per day. This seemed to help a little. A few weeks ago, I tried another drug called Tramadol that is is used for diabetes-induced neuropathy. It seemed to have some similar effects as the Neurontin but it kept we awake at nights and I swithced back to Neurontin. I, like anyone, am very depressed about having this Neuropathy. I can hardly stand to wear normal shoes and I wear garden clogs (Crocs)that are very soft and loose-fitting to help me get through the day. I take a lot of hot jacuzzi baths which seem to help my feet feel better at the end of the day. I miss walking with my wife, walking the golf course, hiking & skiing. I am going to try to snow ski again this year after taking last year off (the first year I have not skied in 35 years). My research shows that this neuropathy can take anywhere from six months to five years to resolve itself .... with no certainty that you will have total recovery. For me, I am just now at the six month post-chemo point and have told myself to just try to be patient and positive and to hope for the best. If you have this crap, I'm sorry for you, but pray that you will be able to deal with it and make little "baby steps" of progress toward a happy and healthy lifesytle. Aside from all of that, I am glad to be apparently cancer-free now. I have gained my weight back (15 pounds) from when I was the sickest. My energy level is pretty much back to normal and I don't think about my cancer much anymore compared to when it dominated my thoughts, discussions and dreams. May God bless you all and those around you that care so much about you. Use those friends and family for the incredible strength that they can bring to you. Take care friends! Live long and seize the day! Ron1norma2 Thu, 03 Nov 2005 00:00:00 GMT Hi Ron, I too am from Colorado (Wheat Ridge) and just finished my 12 FolFox treatments last month. I received 10 Oxa treatments and had to stop because of the numbness in palm of hands, fingers, and feet. I am 49 years old and had colon cancer on the right side. They removed about 6" of the colon. Will get my port out next week as it is causing alot of pain as it did throughout the whole treatment. Anyway, yes the numbness is a bit of a challenge. :-) Can't backpack, hike, walk, bike or any of the things really like to do. Hope next year will bring back those activities. Wanted you to know that I just read most of the message boards on this subject. Here's a summary in my opinion. The drug is pretty new (FDA released it in June 2004). So not much out there on trends and treatments that really work. Some really good threads on this site though. Particulary liked the thread under "Cancer/Colon" entitle "Peripheral Neuropathy" date 11/3/2005. (9 posts) And the one under "After Treatment/Side Effects" "Neuropathy from Oxaliplatin" date 2/1/2005. (17 posts). I just started the L-Glutamine as recommended from the Peripheral Neuropathy post. I have definately backed off of my expecations for recovery as I saw that a lot of the folks have been off Oxal for over a year. So I'll re-adjust my timeframe and hope for the best. (It's hard to type as I can't feel the little bumps on the F and J keys. So I have to retype alot.) Fingers get pretty sore if I use them too much as well as the feet. Don't wear shoes or socks (padded soft slippers do the trick). I feel very blessed to be here and appreciate all the support from the care givers and also from resources like this page. Thanks for your story. I will write more as I learn more as I plan to continue researching. God Bless. LeRoy LeRoy Mon, 05 Dec 2005 00:00:00 GMT I hate to have bad news. The Neuropathy gets worse after being off of Oxaliplatin for six months. Then, the real damage from this horrible drug sets in. This has happened to me. Now I am numb from the waist on down and it includes my hands also. Sex is a thing of the past since I have no feelings in that area. I'm an invalid now. So, the worst is yet to come, in about six months. Sandy Biscuit Sat, 17 Dec 2005 00:00:00 GMT Leroy, have you continued the L-Glutamine drinks? Any results you can share? Thanks, Bob Bobbyh Fri, 03 Feb 2006 00:00:00 GMT Bob, I have been taking L-Glutamine for a couple of months now but not at the levels that were recommended from another post (10-20grams). I chose to go easy as I have found that I might have Hep C (possibly from the blood transfusion from my surgery last april). Jury is still out on that one as they are testing for the virus as we speak. I have definately been exposed to it at some point in my life. So as far as the dosage, I ddn't want to get too many new things going in the mix until I was sure if I have Hep C or not. I take 1gram in the morning and 1 at night along with 200mg of B6 both in the morning and night. I found during my treatment with Oxaliplatin, the B6 really helped with the symptoms. I was only taking 200mg a day so I've bumped that up a bit since stopping the Oxaliplatin last Oct. I feel I'm early on in this process and have the mind set that it could take 1-2 years before my fingers and feet get back to normal. But. . . Here are somethings that I have discovered that help the feeling: 1.)Oxaliplatin is a derived from platinum (thats why it cost so much per application - $4K each). I and others have found that the metals collect in the fatty tisues of the body. So we're thinking that massage is the way to go to help get this stuff out of the body. I checked with my nurses at the Oncology office and they said that there isn't conclusive research to show this to be true. But it makes sense to me. So I massage my fingers, hands, arms, legs, feet and toes regularly. At least twice a day. It sure has helped my sensitivity to the toes being touched as well as my fingers. (used to really hurt to type. Now I pretty much type all day, part of my job). 2.) Get plenty of rest. I stopped Oxaliplatin in Oct (2 applications short of 12). Stopped the 5FU a month later (finished treatment). Fatigue was very evident when I went back to work. Tired by 1:00 or 2:00 in the afternoon to the point of not functioning well at all. Now, I can make it to 4-5 o'clock pretty regularly. I get 9-11 hours of sleep at night. As far as the Neuropathy, I have found that if I stay out too late it seems to effect this stuff even more. I had a celebration party about 3 weeks after completing my treatment. Stayed out too late and had a bit of wine. Felt it for many days after. Same on New Years Eve. So, I now make sure that I'm in bed early and sleep at least 9 hours. 3.) Stress effects it too. I had a couple of bad days at work last week and found that the stress made my hands and arms worse. Actually not a bad thing as stress causes so much damage to our health. All in all, I feel a lot better than when I stopped the Oxaliplatin treatment. Back then, I had trouble scratching an itch becuase it hurt my finger nails, I couldn't type much at all, I couldn't begin to rub my toes (also hurt too much). So I guess you could say either the Glutamine is helping or I am learning to live with this stuff. I think its a little of both. Hope that helps. LeRoy LeRoy Sat, 04 Feb 2006 00:00:00 GMT Leroy, I just recently passed the nine-month mark since completing my FOLFOX6 chemotherapy for Stage 3 colon cancer. I am still impacted by the peripheral neuropathy in my hands and feet. It is very minor in my finger tips on three fingers of my left hand but pretty noticeable in both of my feet. The balls of my feet and my big toes are constantly a bother with that bruised/numbing feeling. I tell people it feels like I have stood barefoot on concrete on my toes with a heavy backpack for twelve hours. I gets better at the end of the day when I get off of my feet. I take 200 mg of Neurontin (Gabapentin) three times a day. I take 10 gms of L-Glutamine about every other day (I worry about developing kidney stones if I take too much Glutamine). I try to get at least 8 hours sleep each night along with an hour nap after work each day. I take an occassional Vicodin (Hydrocodone) when the pain is bad. I still find it undesirable to do much walking or standing around. I have been skiing this year again and that has been nice. I find that the sensitivity to cold is not a problem at all anymore. I hope that this neuropathy does finally go away someday. However, if having taken the Oxaliplatin results in cancer STAYING away, I can live with my current condition. I wish you the best in your recovery, that your cancer is gone forever and that those "happy feet" return soon. Ron1norma2 Fri, 10 Feb 2006 00:00:00 GMT Hey Ron, Thanks for the update. Question; are you improving? I am siting your message that says you don't have numbness in some of fingers. Did you have numbness in those fingers to begin with?? and now its getting better? Just wondering. I haven't gone sking in a long long time so its nice to hear that someone is getting to do it. Yes the cold doesn't seem to bother me either. I keeping my fingers crossed for backpacking and camping this summer. I can walk about a mile and actually jogged a quarter of it for the first time last weekend. So I am hopeful!!! I wish you the best in your recovery too. -L LeRoy Fri, 10 Feb 2006 00:00:00 GMT Hey there Leroy. A definite yes in terms of my fingers getting better. I was most notideable in my middle through little finger on my left hand but that has almost gone awayd enitirely. I don't notice it unless i really concentrate on it. MY feet have no problem reminding me that there is a problem down there. I hope you get into the mountains this summer for some backpacking. I love going over to Grand Mesa to camp and fish. I grew up in Gramd Junction and hope to retire in Montrose in 2011. You are I are so similar .... same diesease at about the same age of 49-50, live right next to each other in Colorado (Westminster vs. Arvada) and both love the outdoors. Take care Brother! Ron. Ron1norma2 Sat, 11 Feb 2006 00:00:00 GMT Hey Ron, You are right! Seems like we have a lot in common. If you'd like to continue discussions of our commonalities, you can contact me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. Specifically retirement in Montrose! Been toying with the idea too. LeRoy LeRoy Sun, 12 Feb 2006 00:00:00 GMT Ron & Leroy Have either of you heard of the drug Lyrica? My husband just received an RX for it. Doctors tell us they have had some good results, but we haven't had time to try it. Also wondering where the two Colorado people went for Treatment, or are we allowed to ask that? nofarm/Kansas Nofarm Fri, 12 May 2006 00:00:00 GMT Hi Nikki, No I can't say that I have. Just did a google search and found quite a few sites. www.Lyrica.com was one of them. Looks like this drug targets 1.)painful diabetic neuropathy and 2.)postherpetic neuralgia, reportedly the two most common neuropathic pain conditions. Found out that postherpetic neuralgia is pain that persists after shingles. So looks like this drug would help with the pain. Couldn't find anything about curing it. I know that my pain has subsided once I began massaging my feet and taking L-Glutamine. I started slowly and gently at first with the massaging. It is recommended that you take 10grams of L-Glutamine a day (I only take 2grams as I am fighting off Hepatitus so I don't want to stress the liver too much). Since starting massages and the L-Glutamine, I type all day long and at night too. The numbness is still there but I can do things without feeling the pain that I felt when I first finished up my treatments. (I just got back from a convention in Las Vegas where I walked 6-8 miles everyday for 4 days. Feet are numb but I was able to go the distance). Thank God! I feel pretty blessed. I agree with Ron, that if the cancer stays away I will gladly put up with the numbness. As far as my treatment, I received care from a Dr. in Lakewood, Colorado. I just read the policies for this site, and I don't think that I can post his name (they removed an email address that I posted earlier. This does make sense as far a identity protection). So I would say this. . . Look up the top 10 Cancer treatment Dr's for Colorado, he's in there. And I have a friend that has gone through two rounds of colen cancer who has received great care from another Dr. that is also in the top 10. My Doc has his own building and does all of the treatments from there. I do know that Lutheren in Wheat Ridge also has a care center on the 6th floor. I wish you and your husband the best and remember to make this day count, because thats all that we can really count on. God Bless LeRoy LeRoy Sat, 13 May 2006 00:00:00 GMT Leroy: I appreciate your reply. We have decided to leave our current Cancer Care Center for a more comprehensive group and may look into Lakewood or group at old Fitsimmons site on Colfax. If we stay where we are, my husband will surely suffer another poor decision. We are even looking at a group with a site in Tulsa OK and Zion Ill, but our Kansas insurance will only cover the Zion hospital. If I have time, we maybe should jump to the great TX icon on the gulf. We picked a surgeon from the 8250 list, but I think his fame has hurt his ego. I have never met a more caliver person, especially after my husband suffered a leak in his Lower bowel resection and two bouts of septus. Then to add insult, we found out after radiation, that dispite the hospital's uptodate PET Scanner, the radiation equipment was 10 years old and burned the site to the point of unrepair. As I read other message threads, apparently we are not alone in "being alone" in our care. Even with a very compassionate radiation Dr, I can see I will be totally in charge of appointment follow-ups, treatment options, etc. It will be a repeat of come in, nurses very pleasant, hook him up, go back to the hotel, cry, agonize, and start over the next day. If only I could tell you the entire tragic story. When one's entire life hung on a set of brave floor nurses, who put their jobs on the line to tell us we needed a new doctor, and stat, I don't think I would be at this site now, but a widow with much resentment. Thanks again for your reply, and we will do some searching but quickly. The colon cancer has returned in two places and met...(sp) to the liver. Nofarm Sun, 14 May 2006 00:00:00 GMT Nikki, So sorry to hear about your journey. I will be keeping you and your husband in my prayers. I would say that my treatment by my oncologist was exceptional. But more importantly was my surgen. He is tops at Lutheren and his name starts with an "M". He is originally from Africa. Everyone that I have spoken to says he is the best including all of the staff at Lutheren. So as far as the surgery part of things, I would highly recommend him. Keep the faith LeRoy LeRoy Sun, 14 May 2006 00:00:00 GMT Nikki, I had my chemotherapy treatments at a Kaiser Permanente facility in Broomfield, CO called Rock Creek. It was a brand new facility when I started there in December, 2004. What a wonderful staff of very compassionate and caring people. They are like a second family to me. I am now 13 months out of chemo and feel pretty darned good. I actually think I might be seeing some minimal signs of improvement in my neuropathy in my feet. I have not heard of the drug Lyrica you were asking about. Ron Ron1norma2 Mon, 15 May 2006 00:00:00 GMT Ron:My name is brian & I live in Thornton, CO.  Last year, I came home from the hospital for a totally unrelated problem, and experienced "severe hematuria" (bleeding while urinating).  Whe I finally got hold of my urologist, I was told that I couold be seen in about 6 weeks.  My PCP (primary care physician) told me to go right over to his office & insist on being seen.  I wasa seen, grudgingly so, and had a scope inserted into my bladder to se what the problem was.  There, right in front of me, was a bleeding tumor which I was told needed to come ljut ASAP.  I had the scope done on a Tuesday, and the tumor ws removed that Friday.  Then I was told that I should have the whole bladder removed.  Naturally, I wanted a 2nd opinion, so I went to another uroogist who also was into natural medicines.  Once again, I was told that I needed to have my bladder totally removed.  I did so, and then had cis-Platin treatment.  Afterthe second of 4 treatments, I had to have a transfusion of red blood and white blood cells since my count was very low.  This was repeated after the 3rd and after the 4th treatment of cis-Platin..  My neuropathy started up about a month after the last treatment.  I asked my cancer doctor about it, ad was told that it should go away after a year.  (My wife has had ovarian cancer twice (1995 & 2000) and she still has neuropathy in her hands and feet.)  The thing that bother s me about the neuropathy, is that I tend to drop things (e.g. a full cup of coffee) and my balance is poor.  I have to be very careful when I walk, especially around ice on the ground.No-one ever told me that neuropathy would be a side effect of "chemo", and I am very upset about it.  I thought that the drug companies HAD to tell you all about all of the side effects.  Has anyone out there ever been told about neuropathy BEFORE chemo treatments?  Is there anything that can be done to penalize the drug companies for this serious omission of pertinent information?  I would be interested in looking into this more if I had some support. My wife has been on Neurontin for several years, and I have found that taking 2  pills in the AM and 2 at night serves to relieve the numbness fairly well.  If it gets too severe, I just increase the dosage a bit.  However, since this medicine is known to make you sleepy, I don't up the dosage very much or very often.  Our PCP had no problem with writing me a prescription for it, when I complained about my neuropathy to her.We are both 2 time cancer survivors.  My wife tells me that she hung on for me, and I know that I hung on just because I love her and I was too stubborn to give up.  I've now been cancer free for a year and fighting every step of the way.  Never, never give up! Hope y'all have a very wonderful season this year (politically correct statement) and that the new year brings everyone relief from this nasty side-effect of "chemo"Brian Sir Brian The Lion Tue, 12 Dec 2006 00:00:00 GMT  On 12/12/2006 Sir Brian The Lion wrote:Ron:My name is brian & I live in Thornton, CO.  Last year, I came home from the hospital for a totally unrelated problem, and experienced "severe hematuria" (bleeding while urinating).  Whe I finally got hold of my urologist, I was told that I couold be seen in about 6 weeks.  My PCP (primary care physician) told me to go right over to his office & insist on being seen.  I wasa seen, grudgingly so, and had a scope inserted into my bladder to se what the problem was.  There, right in front of me, was a bleeding tumor which I was told needed to come ljut ASAP.  I had the scope done on a Tuesday, and the tumor ws removed that Friday.  Then I was told that I should have the whole bladder removed.  Naturally, I wanted a 2nd opinion, so I went to another uroogist who also was into natural medicines.  Once again, I was told that I needed to have my bladder totally removed.  I did so, and then had cis-Platin treatment.  Afterthe second of 4 treatments, I had to have a transfusion of red blood and white blood cells since my count was very low.  This was repeated after the 3rd and after the 4th treatment of cis-Platin..  My neuropathy started up about a month after the last treatment.  I asked my cancer doctor about it, ad was told that it should go away after a year.  (My wife has had ovarian cancer twice (1995 & 2000) and she still has neuropathy in her hands and feet.)  The thing that bother s me about the neuropathy, is that I tend to drop things (e.g. a full cup of coffee) and my balance is poor.  I have to be very careful when I walk, especially around ice on the ground.No-one ever told me that neuropathy would be a side effect of "chemo", and I am very upset about it.  I thought that the drug companies HAD to tell you all about all of the side effects.  Has anyone out there ever been told about neuropathy BEFORE chemo treatments?  Is there anything that can be done to penalize the drug companies for this serious omission of pertinent information?  I would be interested in looking into this more if I had some support. My wife has been on Neurontin for several years, and I have found that taking 2  pills in the AM and 2 at night serves to relieve the numbness fairly well.  If it gets too severe, I just increase the dosage a bit.  However, since this medicine is known to make you sleepy, I don't up the dosage very much or very often.  Our PCP had no problem with writing me a prescription for it, when I complained about my neuropathy to her.We are both 2 time cancer survivors.  My wife tells me that she hung on for me, and I know that I hung on just because I love her and I was too stubborn to give up.  I've now been cancer free for a year and fighting every step of the way.  Never, never give up! Hope y'all have a very wonderful season this year (politically correct statement) and that the new year brings everyone relief from this nasty side-effect of "chemo"Brian Hi Brian - I'm not dealing with cancer but I am dealing with peripheral neuropathy, which is how I wound up at a cancer website and read your posting.  I was struck by your comment that you were never advised that PN could be a side effect of cancer-treating drugs - this is exactly what I was thinking, but coming at it from a different direction.  I was searching the web for an explanation for my numb, tingly hands and feet when I stumbled upon PN, and I would NEVER have known about its relation to cancer therapy if I hadn't, on a whim, typed the words "fried nerve endings" at google and got taken to a cancer survivor website, where there was SOOOOO much more info about PN than I had found anywhere else!  I kept thinking, if the doctors know the drugs cause PN, why the hell aren't they doing something to counteract that????  These poor people already have cancer, do they need PN too???  And if it's that common, why isn't there any research going into it?  Why don't they already know how to prevent it for the benefit of cancer patients, if not for little ole me?  I've been to two neurologists and neither of them could figure out what was wrong with me, after hundreds of dollars of tests and MRIs - if the Internet didn't exist, I still wouldn't know.  I've been treating myself for about 2 years and am always looking for new possibilities - haven't tried Neurontin, just started L-gluthamine, also take huge doses of multi vitamins and extra B-vitamins, herbs, big doses of Vit. C (I have more faith in Linus Pauling than I do in doctors), plus the usual massage, prayer, flat shoes, etc.  Oh yeah, and gave up wine (sob!).  I think it would be VERY interesting to find out how many cancer patients were advised about PN before starting their treatments.  It's not like it goes away, and in my experience the longer you have it without treating it, the worse it gets. I see your posting was only a month ago so I hope you get this message and hope you and your wife are both doing well.  Rosy Rosythorn Thu, 25 Jan 2007 00:00:00 GMT  On 1/25/2007 Rosythorn wrote: On 12/12/2006 Sir Brian The Lion wrote:Ron:My name is brian & I live in Thornton, CO.  Last year, I came home from the hospital for a totally unrelated problem, and experienced "severe hematuria" (bleeding while urinating).  Whe I finally got hold of my urologist, I was told that I couold be seen in about 6 weeks.  My PCP (primary care physician) told me to go right over to his office & insist on being seen.  I wasa seen, grudgingly so, and had a scope inserted into my bladder to se what the problem was.  There, right in front of me, was a bleeding tumor which I was told needed to come ljut ASAP.  I had the scope done on a Tuesday, and the tumor ws removed that Friday.  Then I was told that I should have the whole bladder removed.  Naturally, I wanted a 2nd opinion, so I went to another uroogist who also was into natural medicines.  Once again, I was told that I needed to have my bladder totally removed.  I did so, and then had cis-Platin treatment.  Afterthe second of 4 treatments, I had to have a transfusion of red blood and white blood cells since my count was very low.  This was repeated after the 3rd and after the 4th treatment of cis-Platin..  My neuropathy started up about a month after the last treatment.  I asked my cancer doctor about it, ad was told that it should go away after a year.  (My wife has had ovarian cancer twice (1995 & 2000) and she still has neuropathy in her hands and feet.)  The thing that bother s me about the neuropathy, is that I tend to drop things (e.g. a full cup of coffee) and my balance is poor.  I have to be very careful when I walk, especially around ice on the ground.No-one ever told me that neuropathy would be a side effect of "chemo", and I am very upset about it.  I thought that the drug companies HAD to tell you all about all of the side effects.  Has anyone out there ever been told about neuropathy BEFORE chemo treatments?  Is there anything that can be done to penalize the drug companies for this serious omission of pertinent information?  I would be interested in looking into this more if I had some support. My wife has been on Neurontin for several years, and I have found that taking 2  pills in the AM and 2 at night serves to relieve the numbness fairly well.  If it gets too severe, I just increase the dosage a bit.  However, since this medicine is known to make you sleepy, I don't up the dosage very much or very often.  Our PCP had no problem with writing me a prescription for it, when I complained about my neuropathy to her.We are both 2 time cancer survivors.  My wife tells me that she hung on for me, and I know that I hung on just because I love her and I was too stubborn to give up.  I've now been cancer free for a year and fighting every step of the way.  Never, never give up! Hope y'all have a very wonderful season this year (politically correct statement) and that the new year brings everyone relief from this nasty side-effect of "chemo"Brian Hi Brian - I'm not dealing with cancer but I am dealing with peripheral neuropathy, which is how I wound up at a cancer website and read your posting.  I was struck by your comment that you were never advised that PN could be a side effect of cancer-treating drugs - this is exactly what I was thinking, but coming at it from a different direction.  I was searching the web for an explanation for my numb, tingly hands and feet when I stumbled upon PN, and I would NEVER have known about its relation to cancer therapy if I hadn't, on a whim, typed the words "fried nerve endings" at google and got taken to a cancer survivor website, where there was SOOOOO much more info about PN than I had found anywhere else!  I kept thinking, if the doctors know the drugs cause PN, why the hell aren't they doing something to counteract that????  These poor people already have cancer, do they need PN too???  And if it's that common, why isn't there any research going into it?  Why don't they already know how to prevent it for the benefit of cancer patients, if not for little ole me?  I've been to two neurologists and neither of them could figure out what was wrong with me, after hundreds of dollars of tests and MRIs - if the Internet didn't exist, I still wouldn't know.  I've been treating myself for about 2 years and am always looking for new possibilities - haven't tried Neurontin, just started L-gluthamine, also take huge doses of multi vitamins and extra B-vitamins, herbs, big doses of Vit. C (I have more faith in Linus Pauling than I do in doctors), plus the usual massage, prayer, flat shoes, etc.  Oh yeah, and gave up wine (sob!).  I think it would be VERY interesting to find out how many cancer patients were advised about PN before starting their treatments.  It's not like it goes away, and in my experience the longer you have it without treating it, the worse it gets. I see your posting was only a month ago so I hope you get this message and hope you and your wife are both doing well.  RosyHi, Rosy:I'm glad that I was able to shed a little light on your probem, if only a glimmer. The reason I wrote my message, was to try to see how many other people there were out there who had never been advised that PN is a side effect of cancer (and possibly other treatments).  I think that if there were enough people who suffer this disability who had never been advised by their doctors that this would probably be a permanent thing (my doctor told me that it would probably go away in about a year), then I think we might have a very strong case for sueing the drug manufacturers.  I don't blame the doctors, because the drug pushers (sometimes called detail people) don't see fit to tell the doctors of this side effect, or else even they don't know because the drug companies don't tell them.  In either case, I believe that all of the cancer drug companies know which drugc will cause PN and they ought to held accountable.  (Hmmmm what a redneck I am!)  Any thoughts on this? Brian   Sir Brian The Lion Thu, 25 Jan 2007 00:00:00 GMT Hi Brian - I completely agree, someone should try to find out how many weren't told about PN and think about a class action suit.  I mean, I'm sure no one would refuse a possible cancer cure because they MIGHT get PN too, but my feeling is that since the doctors and drug companies all know PN is a possibility, why aren't they addressing that along with cancer?  PN may not be life-threatening but it certainly is no joke, esp. if you've just gone through (or are still going through) cancer therapy.  And from what I've read, there's practically no research going on re PN.  I'm not sure how you could go about finding other people with the same issue; probably via chat boards like this one, or www.craigslist.com, where you can post uncensored "rants & raves" which others can read and respond to.  I'm also sure anyone suffering from PN alone would rally to the cause, if only in the interests of freedom of information.  Like I said, I've looked at hundreds of PN-related websites and never seen anything about it being caused by chemo.  Stress (that's mine), diabetes, alcohol, toxic stuff, all sorts of things, but not chemo.  It's like the right hand doesn't know what the left hand is doing.  If I can help, let me know - have computer access, will type!  Rosy Rosythorn Fri, 02 Feb 2007 00:00:00 GMT My name is Joe and im 36 years old.In April of 01 i was having issues getting sick and was diagnosed with a "reflux" disorder.  I lived with what all the doctors told was just that reflux. Well in May06 it got to the point i was bed ridden.  I went to see the doctors again and was told again it was exactly that. a reflux disorder. i went to a gastroentologist for a 2nd opinion.  After an endoscopy/colonoscopy i was told i had plum sized tumor in my colon just past my appendix. I was 80% blocked and everything going through my system was bottle-necked and being pushed back up. it was colon cancer. four days later i had a right hemi-coloctomy removing the tumor , my appendix and about4-6 inches of both my colon and small intestine. I went through a full 15 treatments of lukovorin, 5FU and Oxcilaplatin. My oncologist before treatment ever started informed me of the possible side effects of the drugs including the PN. After even the  first round of chemo i had the the PN effects. it lasted for around 4-6 days and then subsided leaving me with about 3-5 days of being PN symptom free before the next round of chemo. This cycle repeated itself through the next 6-7 treatments. Around the 8th treatment. the PN didnt go away. And gradually the effects got worse as chemo sessions progressed. It wasnt until i had 2 treaments to go before the dosage of the oxcilaplatin was reduced. and then only minimally. I finishd chemo the 2nd week of Dec 06. so it hasnt been that long. and the PN has only gotten worse.   The effects plateaued last week. But its agonizing. My feet are constantly numb and tingly. they feel like they are asleep all the time. If the sheets or blankets move over my feet at night i wake up and have a hard time going back to sleep. this happens 2-3 times a night. And my hands, well i have a hard time writing now, tying shoes for my sons, etc. I repair fine electronics. I work with my hands. and now i no longer have a good sense of touch. And im not real sure how this is going to work out. I got a referral to a neurologist and saw him actually just today. He told me that the fact the sensations have plateaued bodes well plus my age which is relatively young for all that has happened. anyways, he told me that at this point in time there is no real treatment for what is going on and only time will tell exactly how this is going to pan out. But he did prescribe me Symbalta. I believe its actually an antidepressant. He stated that the drug has had some good response to actually helping with the numbness and tingling sensations associated with PN. Anyways, I hope things improve for all you. Joe70 Tue, 06 Feb 2007 00:00:00 GMT  On 2/6/2007 Joe70 wrote:My name is Joe and im 36 years old.In April of 01 i was having issues getting sick and was diagnosed with a "reflux" disorder.  I lived with what all the doctors told was just that reflux. Well in May06 it got to the point i was bed ridden.  I went to see the doctors again and was told again it was exactly that. a reflux disorder. i went to a gastroentologist for a 2nd opinion.  After an endoscopy/colonoscopy i was told i had plum sized tumor in my colon just past my appendix. I was 80% blocked and everything going through my system was bottle-necked and being pushed back up. it was colon cancer. four days later i had a right hemi-coloctomy removing the tumor , my appendix and about4-6 inches of both my colon and small intestine. I went through a full 15 treatments of lukovorin, 5FU and Oxcilaplatin. My oncologist before treatment ever started informed me of the possible side effects of the drugs including the PN. After even the  first round of chemo i had the the PN effects. it lasted for around 4-6 days and then subsided leaving me with about 3-5 days of being PN symptom free before the next round of chemo. This cycle repeated itself through the next 6-7 treatments. Around the 8th treatment. the PN didnt go away. And gradually the effects got worse as chemo sessions progressed. It wasnt until i had 2 treaments to go before the dosage of the oxcilaplatin was reduced. and then only minimally. I finishd chemo the 2nd week of Dec 06. so it hasnt been that long. and the PN has only gotten worse.   The effects plateaued last week. But its agonizing. My feet are constantly numb and tingly. they feel like they are asleep all the time. If the sheets or blankets move over my feet at night i wake up and have a hard time going back to sleep. this happens 2-3 times a night. And my hands, well i have a hard time writing now, tying shoes for my sons, etc. I repair fine electronics. I work with my hands. and now i no longer have a good sense of touch. And im not real sure how this is going to work out. I got a referral to a neurologist and saw him actually just today. He told me that the fact the sensations have plateaued bodes well plus my age which is relatively young for all that has happened. anyways, he told me that at this point in time there is no real treatment for what is going on and only time will tell exactly how this is going to pan out. But he did prescribe me Symbalta. I believe its actually an antidepressant. He stated that the drug has had some good response to actually helping with the numbness and tingling sensations associated with PN. Anyways, I hope things improve for all you. Hello Joe - I'm sorry to hear  all the bad things that have happened to you, but glad to hear it sounds as if the worst is past.  I have trouble with my hands too, and I'm a secretary by trade so typing is crucial for me; it must be very difficult for you as a fine technician.  Buttons are difficult, tying shoes hard, small earrings almost impossible, picking up a penny very difficult, etc.  I had kind of learned to live with the wooden feet/legs by wearing the most comfy shoes and giving myself massages.  But then the trouble with my hands got really bad in the middle of last year, which is when I really started trying to find a way to fix it myself as doctors have been no help.  The things I'm doing seem to be working, as it's not getting any worse and for awhile there I was very scared - I'm 57 years old, recently divorced, and no one is going to take care of me except myself.  What I'm doing is this:  heavy doses of B vitamins, about 3,000 millegrams of Vit. C per day (1,000 ml. with each meal), 1 tbsp. of L-gluthamine in apple juice, regular multi-vitamins, and NO ALCOHOL, sob.  That's the tough one, but seems to be the most important.  Comfy shoes and a good brisk walk for about a half hour every day, yoga (esp. inverted exercises, seems to help circulation), and learning how to not get stressed out no matter what happens (which is probably why doctors prescribe antidepressants).  Just yesterday I saw an ad in a magazine for a product called Lyrica Pregabalin, which purports to provide relief from "stabbing pain in your feet, tingling, numbness, burning or shooting sensations" .  I'm going to check it out online as soon as I finish this email.  The website is www.pfizerhelpfulanswers.com.  You might want to look at it too.  Also, have you tried wearing thick sox to bed at night?  I would imagine they would protect your feet from the sensations of the sheets touching them and waking you up.  Thanks for adding your input here, I check this site all the time hoping more people will add comments.  Hope Brian sees your response too.  Blessings to you -Rosy Rosythorn Tue, 13 Feb 2007 00:00:00 GMT  On 2/6/2007 Joe70 wrote:My name is Joe and im 36 years old.In April of 01 i was having issues getting sick and was diagnosed with a "reflux" disorder.  I lived with what all the doctors told was just that reflux. Well in May06 it got to the point i was bed ridden.  I went to see the doctors again and was told again it was exactly that. a reflux disorder. i went to a gastroentologist for a 2nd opinion.  After an endoscopy/colonoscopy i was told i had plum sized tumor in my colon just past my appendix. I was 80% blocked and everything going through my system was bottle-necked and being pushed back up. it was colon cancer. four days later i had a right hemi-coloctomy removing the tumor , my appendix and about4-6 inches of both my colon and small intestine. I went through a full 15 treatments of lukovorin, 5FU and Oxcilaplatin. My oncologist before treatment ever started informed me of the possible side effects of the drugs including the PN. After even the  first round of chemo i had the the PN effects. it lasted for around 4-6 days and then subsided leaving me with about 3-5 days of being PN symptom free before the next round of chemo. This cycle repeated itself through the next 6-7 treatments. Around the 8th treatment. the PN didnt go away. And gradually the effects got worse as chemo sessions progressed. It wasnt until i had 2 treaments to go before the dosage of the oxcilaplatin was reduced. and then only minimally. I finishd chemo the 2nd week of Dec 06. so it hasnt been that long. and the PN has only gotten worse.   The effects plateaued last week. But its agonizing. My feet are constantly numb and tingly. they feel like they are asleep all the time. If the sheets or blankets move over my feet at night i wake up and have a hard time going back to sleep. this happens 2-3 times a night. And my hands, well i have a hard time writing now, tying shoes for my sons, etc. I repair fine electronics. I work with my hands. and now i no longer have a good sense of touch. And im not real sure how this is going to work out. I got a referral to a neurologist and saw him actually just today. He told me that the fact the sensations have plateaued bodes well plus my age which is relatively young for all that has happened. anyways, he told me that at this point in time there is no real treatment for what is going on and only time will tell exactly how this is going to pan out. But he did prescribe me Symbalta. I believe its actually an antidepressant. He stated that the drug has had some good response to actually helping with the numbness and tingling sensations associated with PN. Anyways, I hope things improve for all you. Hello Joe - I'm sorry to hear  all the bad things that have happened to you, but glad to hear it sounds as if the worst is past.  I have trouble with my hands too, and I'm a secretary by trade so typing is crucial for me; it must be very difficult for you as a fine technician.  Buttons are difficult, tying shoes hard, small earrings almost impossible, picking up a penny very difficult, etc.  I had kind of learned to live with the wooden feet/legs by wearing the most comfy shoes and giving myself massages.  But then the trouble with my hands got really bad in the middle of last year, which is when I really started trying to find a way to fix it myself as doctors have been no help.  The things I'm doing seem to be working, as it's not getting any worse and for awhile there I was very scared - I'm 57 years old, recently divorced, and no one is going to take care of me except myself.  What I'm doing is this:  heavy doses of B vitamins, about 3,000 millegrams of Vit. C per day (1,000 ml. with each meal), 1 tbsp. of L-gluthamine in apple juice, regular multi-vitamins, and NO ALCOHOL, sob.  That's the tough one, but seems to be the most important.  Comfy shoes and a good brisk walk for about a half hour every day, yoga (esp. inverted exercises, seems to help circulation), and learning how to not get stressed out no matter what happens (which is probably why doctors prescribe antidepressants).  Just yesterday I saw an ad in a magazine for a product called Lyrica Pregabalin, which purports to provide relief from "stabbing pain in your feet, tingling, numbness, burning or shooting sensations" .  I'm going to check it out online as soon as I finish this email.  The website is www.pfizerhelpfulanswers.com.  You might want to look at it too.  Also, have you tried wearing thick sox to bed at night?  I would imagine they would protect your feet from the sensations of the sheets touching them and waking you up.  Thanks for adding your input here, I check this site all the time hoping more people will add comments.  Hope Brian sees your response too.  Blessings to you -Rosy Rosythorn Tue, 13 Feb 2007 00:00:00 GMT I just read this online and thought it was interesting.  You can see the whole story at yahoo mail science "HIV-related foot pain".  Won't do me any good as I certainly couldn't smoke joints all day, but maybe it will give someone some ideas re tetrohydro-whatsit.   Rosy"The study, conducted at San Francisco General Hospital from 2003 to 2005 and published Monday in the journal Neurology, involved 50 patients suffering from HIV-related foot pain known as peripheral neuropathy. There are no drugs specifically approved to treat that kind of pain.Three times daily for nearly a week, the patients smoked marijuana cigarettes machine-rolled at the National Institute of Drug Abuse, the only legal source for the drug recognized by the federal government.Half the patients received marijuana, while the other 25 received placebo cigarettes that lacked the drug's active ingredient, tetrahydrocannabinol. Scientists said the study was the first one published that used a comparison group, which is generally considered the gold standard for scientific research.Thirteen patients who received marijuana told doctors their pain eased by at least a third after smoking pot, while only six of those smoking placebos said likewise. The marijuana smokers reported an average pain reduction of 34 percent, double the drop reported by the placebo smokers as measured with a widely accepted pain scale."These results provide evidence that there is measurable medical benefit to smoking cannabis for these patients," said Dr. Donald Abrams, the University of California, San Francisco professor who led the study."  Rosythorn Tue, 13 Feb 2007 00:00:00 GMT My error - the website for the drug lyrica is www.lyrica.com.  The other website address is how to get free or reduced rate prescriptions from Pfizer.  Rosy Rosythorn Tue, 13 Feb 2007 00:00:00 GMT Hello everyone. I am 57 and I was diagnosed with colorectal cancer approximately a year ago. I had about 16" of my colon removed. I've had the full 6 mos of Folfox treatment which ended on March 29. I was lucky that I only postponed 1 treatment by a week due to low platlet counts and another treatment by a week due to a low white cell count. My neuropothy symtoms seem to be very similiar as everyone else. The first 6-8 tratments I was okay. The neuropothy would go away prior to the next treatment. As time went on though, I noticed that it was getting worse and not going away. At one point I actually found myself chocking from breathing in the cold. During the whole treatment cycle, I was able to work on/off but most of the time, not the full day. I was told at the time that neuropothy symtoms can take 1-2mos, 6mos, 1-2 yrs, or never, to subside. I feel right now that my symtoms are not any better or worse than how they were  after my last treatment. I've had 2 CT scans and recently a colonoscopy and everything looks clean. I'm very concerned though, with the neuropothy. I've only tried a B vitamin AlphaBetic, and I haven't seen any changes. I'd appreciate any suggestions. Also, on a good note, if the cancer will be gone forever, I can put up with the neuropothy. Cable Guy Thu, 11 Oct 2007 00:00:00 GMT My husband is 37 with stage 3 colon cancer.  He has had 6 rounds of Folfox, which has cause severe neuropothy!  Thank you for your story; it helps.  JJSS1 Fri, 26 Oct 2007 00:00:00 GMT Hi ron my name is brenda. I am currently in remission from colon cancer i had surgery in december 06, and after surgery i started chemo. I am still having problems with oxalipatin neuropathy and is currently unable to work. My neuropathy is so bad in my hands and feet. The doctor has tried several medication to help with the pain, tightness, num finger, feet and toes. I am currently taking 2000mg of neurontin ( gabapentin) 2 caps 4 x a day so i sleep alot. I have tried several other medication such as lyrica. The gabapentin helps some.Ron,Do you have trouble with cold temp weather because i do? How can you work with the pain and numness?  freee Fri, 18 Jan 2008 00:00:00 GMT Hello!  I just want to tell you that I have been on Methotrexate for probably 20 or more years.  NO ONE ever told me, or was probably even aware of the side-affect of neuropathy.  I take the med for rheumatoid arthritis.  My doctor put me on neurontin about six or more years ago when I complained of burning feet.  I take 2400 mg of neurontin a day, and it's barely keeping up with the pain.   I was thrilled when I learned about L-glutamine helping PN.  I have started using it, but am having trouble knowing how much to use with the neurontin.  I haven't talked to my doctor about this yet, but I see him next month and will tell him ALL ABOUT what I've learned thanks to the internet and shared information from actual sufferers of this problem.  I think there is SO much that the doctors don't have a clue about.  I know some oncologists are aware of how L-glutamine helps PN, so they recommend it to their patients, but others don't know about it.  THe pharmaceutical companies would rather have me take one of their meds than a natural amino acid to help my condition.  Thanks for listening.     MaryMargaret Tue, 18 Mar 2008 00:00:00 GMT Hello!  I just want to tell you that I have been on Methotrexate for probably 20 or more years.  NO ONE ever told me, or was probably even aware of the side-affect of neuropathy.  I take the med for rheumatoid arthritis.  My doctor put me on neurontin about six or more years ago when I complained of burning feet.  I take 2400 mg of neurontin a day, and it's barely keeping up with the pain.   I was thrilled when I learned about L-glutamine helping PN.  I have started using it, but am having trouble knowing how much to use with the neurontin.  I haven't talked to my doctor about this yet, but I see him next month and will tell him ALL ABOUT what I've learned thanks to the internet and shared information from actual sufferers of this problem.  I think there is SO much that the doctors don't have a clue about.  I know some oncologists are aware of how L-glutamine helps PN, so they recommend it to their patients, but others don't know about it.  THe pharmaceutical companies would rather have me take one of their meds than a natural amino acid to help my condition.  Thanks for listening.     MaryMargaret Tue, 18 Mar 2008 00:00:00 GMT  On 2/2/2007 Rosythorn wrote:Hi Brian - I completely agree, someone should try to find out how many weren't told about PN and think about a class action suit.  I mean, I'm sure no one would refuse a possible cancer cure because they MIGHT get PN too, but my feeling is that since the doctors and drug companies all know PN is a possibility, why aren't they addressing that along with cancer?  PN may not be life-threatening but it certainly is no joke, esp. if you've just gone through (or are still going through) cancer therapy.  And from what I've read, there's practically no research going on re PN.  I'm not sure how you could go about finding other people with the same issue; probably via chat boards like this one, or www.craigslist.com, where you can post uncensored "rants & raves" which others can read and respond to.  I'm also sure anyone suffering from PN alone would rally to the cause, if only in the interests of freedom of information.  Like I said, I've looked at hundreds of PN-related websites and never seen anything about it being caused by chemo.  Stress (that's mine), diabetes, alcohol, toxic stuff, all sorts of things, but not chemo.  It's like the right hand doesn't know what the left hand is doing.  If I can help, let me know - have computer access, will type!  RosyI won't bore you by repeating my story; it's the same as most everybody's.  I had Stage IIIB colon cancer on ascending colon that had penetrated the colon wall but all nodes collected were clear.  Removed the tumor and advised to do FOLFOX6 in case 'loose cells' were left behind.  Was advised early on of cold-sensitiivty caused by Oxilaplatin.  Complained of finger and feet pain, soreness, and numbness after 6 of 12 treatments.  Was advised that it would go away after treatment was complete; it hasn't.  Condition has grown worse so far after 2 months.  Found Oxilaplatin manufacturer's website; PN is a well-known side effect there.  Many studies done to assess PN and treatments for it; no successful conclusions so far.  Recommendations to reduce PN when it occurs (reduce dosage) were not followed by my oncologist!  His attitude it that FOLFOX6 is so much better than alternatives that it justifies the PN risks.  I'm not sure that the Oxilaplatin manufacturer's study and comparative data to 5-FU/Leu./Irantocan (sp?) treatment success really says that at all.  My onc. told me that the combination of surgery and FOLFOX6 would give me 90+% probability of remaining cancer-free after 5 years; the manufacturer's data did not say that at all.If I had known then what I think I know now, I'm not sure I would have stayed with FOLFOX6 for the entire program and certainly not as it was administered.  I started at 90mg/m2; it was reduced to 85mg/m2 after I complained of PN.  The manufacturer recommended to start at 100mg/m2 and drop to as low as 65mg/m2 if PN develops.  If PN goes beyond Stage 3 (impacts normal daily life functions) consider elimination of Oxilaplatin.  In one study they ran, 30% of the participants dropped-out before the study was completed due primarily to PN issues.My Granddaddy used to say, "If your foresight was as good as your hindsight, you would be better-off by a damn-sight!"Ed edupnorth Thu, 04 Sep 2008 00:00:00 GMT