CancerCompass message board discussion started by Robabe on 1/14/2006 http://www.cancercompass.com/message-board/message/all,4059,0.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/ I have neuropathy in my hands, feet, (abdominal area sometimes) and weakness of legs after treatment of Taxol. I finished chemo six weeks ago, and I still experience the neuropathy. Does anyone have any suggestions to lessen the affects? I am curious how long it last? Some patients tell me if goes away after a few months and some tell me they have had it for four years. What should I expect? Robabe Sat, 14 Jan 2006 00:00:00 GMT I also have Neuropathy after Taxol. I had B/c three yr ago and my numbness got less as the years went by just a small amount of nunbness. I now have overin and doing the taxol/carb 7 th round one more to go. Feet, finger tips and feet are numb. My feet are so bad with pain I can't walk at times. some people can have it for years I was told by my doc. I'm going on 3 years, now I can't say how long it will last. Good shoes help alot. Foot rubs help me. Carol Hope? Sun, 22 Jan 2006 00:00:00 GMT So Sorry to hear you have to deal with chemo and it's side effects. I also have neuropathy that didn't go away after the second 6-month chemo treatment. Hands got better, thankfully, but left foot and leg are awful. I use a long list of supplements.. but specificly for this condition, I use l-glutamine which comes in capsule or powdered form. Calcium citrate and magnesium citrate have been helpful, also Glucosamine blend and maitake mushroom blend. Lite to moderate walking helps me, lots of fluids, and worse case scenario, pain meds without acetomeniphine...(because the cancer has spread to my liver) I'm with you, these side effects stink, but my life has been prolonged. When quality of life issues begin to get serious, (hearing loss or not being able to walk), I will consider not continuing chemo. Also, I will hope for breakthroughs in cancer researce to help us fight this insidious disease. All the best of luck to you! You will be surprised what a good attitude like yours will do to improve a gloomy day. Paula3 Fri, 27 Jan 2006 00:00:00 GMT I finished 6 rounds of Taxol at the end of November. My numbness appeared in my fingers and toes. While my hands have returned to normal, my toes, especially my big toes, continue to have numbness. Here's the weird thing; When my two big toenails started to become discolored and thicker in appearance, I was sure I had developed a nail fungus. When one of the nail started bleeding, I called my doctor. As it turns out, this is a symptom of the Taxol. I'm going to eventually lose the toenails, and have the same thing starting on my thumbnails. Have you or anyone else had this? Jeannies716 Thu, 02 Feb 2006 00:00:00 GMT I had the same problem. Someone told me to try vitamin B6 and B12. It worked for me. Check with your doctor before taking anything new. Carolhg Tue, 21 Mar 2006 00:00:00 GMT A good friend had a very bad case of Neuropathy in addition to other autoimmune diseases. She began taking Original Limu which is rich in Fucoidan (a super nutrient) and is doing much, much better. The doctors told her that she would never walk again, but she is able to go anywhere she wants without a problem. For more information you can e-mail 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 ----. I will be glad to send you some information. JTM Jammor Wed, 29 Mar 2006 00:00:00 GMT I too, have had Taxol/Carb for chemotherapy. I had to have 4 months of chemo after lung cancer surgery. My oncologist said we were going to use agressive measures which meant a full day on an IV once a month. After, my last treatment, I have developed neuropathy in my toes but my fingers seem to be okay. Like you, I also have developed a hard yellow toenail on my big toe on my right foot. I thought it was fungus. It's really uncomfortable to walk alot because it feels like fine gravel in my socks. It's also uncomfortable to sleep when the sheets and blankets rest on my toes. Is this normal? Does anyone know if ibuprofen helps? I thought this would go away. It's been three months (After reading the other messages, I guess not). Yvocat Sun, 02 Apr 2006 00:00:00 GMT I had chemo for non-hodgkins lymphoma Mar.- Jul of 2005. After treatment my arms were numb and my legs were numb up to my thghs. I was so weak that I could barely stand up to walk to the bathroom. I had a test for nerve damage on my legs and forearms. He said I had nerve damage and it may or may not regenerate. I used a cane and went to physical therapy for about 4 months to learn to rebalance. It was very helpful. Well, a year and 3 months later I can write legibly if I take my time, only my hands are 35% numb. The bottom of my feet are numb and some times at night I can feel it up to my knees at which time I get up and walk around. I still have to watch my balance making sure I do not do 45 degree turns too quickly. I use a cane for long walks. In may I took Zevalin at Cancer Treatment Centers of America as tumors had come back under my one arm pit. I guess they are gone now. I am 74 and also have arthritis and fybromyalgia that causes pain. I am however, fortunate to be able to get around, drive my car and work part time. I guess having neuropathy is little to pay for getting rid of the cancer. Some people I have talked to do not have this side effect. I have to say however, that I have had some of it in my feet for as long as 8 years ago, so I guess, the chemo just made it worse. I hope for the best for you. Marylee Thu, 15 Jun 2006 00:00:00 GMT I finished 12 treatments of FOLFOX for stage II colon cancer six weeks ago. The side effects in my hands are getting so bad. When I wake up in the morning I cannot bend my fingers, this has only been for the past two weeks, my feet are numb and my fingertips tingle all the time. The thing that is worrying me the most though is the pain in my finger joints. Has anybody else experienced this? I had no side effects during the treatment. I am getting really afraid of this. Enggal Wed, 05 Jul 2006 00:00:00 GMT My dad had surgery for rectal CA and the tumor was a T2-Stage III tumor. He just got his port and will start chemo (FOLFOX) on Monday. My concern for my dad is the neuropathy. He is a bartender and was planning on working throughout his treatments, but when they gave him the gloves that he would need to wear anytime he needed to go into the refrigerator, he was shocked. He did not realize that the neuropathy would be that dangerous for him. He is worried that he will not be able to grab cold beers from cooler chest or make chilled drinks for his customers. They say for the 7 days after your treatment that you have the sensitivity to cold. How soon does this start happening? Right after your very first treatment? Should he consider not being able to work because of the neuropathy? He also golfs and they told him that he could not be in the sun for long periods of time and that 18 holes would be out of the question. They have told him that all of this is only for the next 6 months, but it sounds like it will affect him longer than that. He is 64 yr old and unfortunately did not plan well for the future and he and my mom both still work and rely on their incomes to live. I read about the Glutamine, B-complex and B12 suggest. Any other ideas to help with this matter. We would also be glad to hear about things he should be aware of or things that he could do to make it more comfortable during this time. Thanks for helping. Johannah15 Thu, 13 Jul 2006 00:00:00 GMT Hello, I had colon cancer in June of 2004 and had folfox 4 chemo treatment. The oxaliplatin is what causes the reaction to cold. For at least 7 days following chemo, he will have a severe reaction to cold. I could not hold a piece of cheese from the frig in my hand. You can drink nothing cold. I do not think he will be able to work that week as he cannot handle cold glasses, beer, etc. If he gets neuropathy in his hands and feet, it will feel like tingling and my feet were constantly cold. This did stop several months after the chemo stopped. One of the worse things about this type of chemo is the horrible taste in your mouth. Finding food I could tolerate wasn't easy. The other thing that I will warn you about is a side affect to the lungs. Less then 1% of the people in the world on this chemo gets pulmonary fibrosis. If your Dad starts with a dry hacking cough, TELL YOUR DOCTOR IMMEDIATELY. I told mine and he said it had nothing to do with the chemo, but it DID. I ended up in the hsospital 6 weeks following chemo because I couldn't breathe. I was on oxygen 24/7 for almost a year. I could not do anything for myself as I would get to out of breath. I am now using oxygen only when I exert myself. I am so much better then I was a year ago. I could have died from this too. I will never be 100% again, but I have learned to live with this ailment. I was on prednisone for over a year and got diabetes and osteoporosis from it. I hope this has helped you. Barbara 119 Tue, 01 Aug 2006 00:00:00 GMT I am going through the same thing you described. Both big toes are discolored and one is bleeding badly. Been diagnosed as nail fungus by 2 doctors. I was caused by 4 treatments of Taxol. I will also lose atleast one big toe nail. Doctor cut about half of it off and cauterized it to stop the bleeding. Only recommendation is to take B1 and 6 which I'm about to start. How are you doing? Any suggestions from your doctor? Barb209 Mon, 07 Aug 2006 00:00:00 GMT After several differant treatments Rituxan steriods,thalidamide and tonight I took the last Revlimid pill. I cant even walk to the bathroom. The pain is unreal and the Neuropathy is severe. Nobody told me about this to give me a choice, and nobody knows how long it will last. All I know is the treatment is worse then the Disease and I cant deal with it. My feet and fingers are numb,freezing,tingle to where It keeps me up most all night. And now im having little mini strokes.(TIA'S) If you have info I'd really appreciate it. Im not sure how you can get it out since guidelines dont allow email addresses.Happyface messenger monkiesandturtles Turtlerah Thu, 05 Oct 2006 00:00:00 GMT I am experiencing the same symptoms.If I find any solutions for the problem, I will let you know. Please let me know if you find out anything. May with a good support system, we can whip this thing !!!!!!!!!! Woody Woodyaench Thu, 12 Oct 2006 00:00:00 GMT I finished six months of Folfox in May and did not get any of the neuropathy side effects until after my last treatment. Unfortunately the neuropathy appears to be escalating, my doctor's office said to load up on the B vitamins. Meanwhile the hands and feet thing is very annoying, I am even carrying a small purse now so that I can see what is in it because when I feel around in my purse I cannot tell what anything is just by touch. I really wish the best for you, six weeks is not very much time for your body to adjust. Congrats anyway on finishing your treatment. Enggal Thu, 12 Oct 2006 00:00:00 GMT Hi, Jude. Please let me know how you are doing. My husband, John, finished 12 rounds of 5FU/oxaliplatin/leucovorin on 9/19/06 and is now suffering from numbness in his fingers, dropping stuff, hard to button shirts, etc. Could you please let me know if you have found something that works for you. Thank you, Margaret. Margaretireland Thu, 02 Nov 2006 00:00:00 GMT I was diagnosed with Inflammatory (HER2 positive) breast cancer 17 months ago and underwent chemotherapy including Docetaxol and Paclitaxol. I developed peripheral neuropathy in the balls of my feet and toes and I too had toenail problems - I lost both of my large toenails. My GP thought it was fungus and the registrars at the cancer unit didn't seem to know anything about it. I finished with chemo nearly a year ago, but am receiving Herceptin and still have the neuropathy. My toenails grew back but they are starting to go black and die off again. My GP has put my on a course of B12 injections and has suggested Carnitine and Glutamine. As with most things, it seems you are your best doctor so surf the many sites on the internet for help. Good Luck! Mazza Wed, 08 Nov 2006 00:00:00 GMT My husband also has these horrible aftereffects, he has yet to have his last chemo treatment scheduled for next month. He too is getting Taxol/Carb for chemo. His legs and feet swell so bad, he is so miserable, he is numb in his toes, fingers, legs, and his feet hurt him so bad, sometimes he can barely walk. He was diagnoised in May 06 with Lung Cancer, has had 34 radiation treatments, he did so good with those, he even continued to work, surgery is not an option, because of location of cancer, but we will see what happens on his next ct scan. This guy has been fighting with every fiber in his body, the chemo is what is causing the biggest problems. These awful side effects will probably continue for some time. Please do not get discouraged!!! Please know we are all hoping for positive outcomes. Cancerwife Wed, 08 Nov 2006 00:00:00 GMT I have stopped my chemo treatments because of the Neuropathy. If I would have had one more treatment I would not have been able to walk. My Doc prescribed lyrica which has really helped with the pain and I also take two PM's at night to help me sleep. One more item that has helped me is walking and swimming in the pool at the gym. The Neuropathy in my legs went away quickly once I started the workout routine. My feet and hands are still quite bad. I hope this info with be a little help with your husband. Earl m Fri, 24 Nov 2006 00:00:00 GMT Please see my post on peripheral neuropathy. I posted it today, 11-30-6. I hope it helps. Scip111 Thu, 30 Nov 2006 00:00:00 GMT Hi all: I'm wondering if any of you were told by your doctor that neuropathy would be a part of your lives after chemo.  I know I wasn't told, nor was my wife.  I had bladder cancer about 13 months ago, and neuropathy appeared while I was having my chemo.  I still have it and curse every time I drop something (e.g.cup of coffee) because I can't hold things properly any more.My wife has had neuropathy in her hands and feet ever since her first round of chemo for ovarian cancer (1995) and it has continued through her second round of chemo for ovarian cancer again (2000) to this day.  No-one ever told her either that she'd have to live with it.Comments? Sir Brian the Lion. Sir Brian The Lion Tue, 13 Feb 2007 00:00:00 GMT I am a 5 yr. lung cancer survivor.  I have two thirds of my right lung gone.  I  am in my 70's and excersie regularly   My NEUROPOTHY is getting worse.   Does any one have an answer   My neurologist has tried different medications.  Nothing seems to work. Shoeshoe Wed, 04 Apr 2007 00:00:00 GMT hi, i just finished with my chemo for colon cancer i cant type well because of the neuropathy but I can answer all your questions ifn you would like to call that is good   my name is donarae 9098037359   Donarae Fri, 06 Jul 2007 00:00:00 GMT My husband went through most all the chemo treatments discussed and he was prescribed Lyrica (generic name pregabalin) for his neuropathy. If I remember correctly it had to be approved seperately (?) from his regular meds. It was 50mg, 3 times a day. The side affects were not too bad but the dizziness sometimes got to him. While in the hospital, they perfomed reflexology. All that is rubbing the hands, arms, feet, legs.....you can look it up on the internet to get the general idea of where to "massage" or "rub" but it helped him a great deal. His hands would warm up, the dizziness subsided.  So, rubbing and massaging and Lyrica. That's what he took to help him. Lou38s Fri, 06 Jul 2007 00:00:00 GMT http://www.metrokc.gov/health/prevcont/ig.htm my neurologist is going to try immune globulin for my post chemo neuropathy  i will let everyone know how it goes   donarae Donarae Mon, 09 Jul 2007 00:00:00 GMT you should check the following, if you have not already done so:Payment:  some insurance companies may balk as this is unapproved AND expensive (probably $10-20K per month).  Have you tried other treatments?Availability:  IVIG is still in short supply and usually allocated to Pharmacies, so your doc may want to see if he can actually get it for you.Location:  this is a 4-6 hour infusion so it is done in a clinic, hospital or perhaps office.  You will probably need the day off. Oncrx Mon, 09 Jul 2007 00:00:00 GMT  On 6/15/2006 Marylee wrote:I had chemo for non-hodgkins lymphoma Mar.- Jul of 2005. After treatment my arms were numb and my legs were numb up to my thghs. I was so weak that I could barely stand up to walk to the bathroom. I had a test for nerve damage on my legs and forearms. He said I had nerve damage and it may or may not regenerate. I used a cane and went to physical therapy for about 4 months to learn to rebalance. It was very helpful. Well, a year and 3 months later I can write legibly if I take my time, only my hands are 35% numb. The bottom of my feet are numb and some times at night I can feel it up to my knees at which time I get up and walk around. I still have to watch my balance making sure I do not do 45 degree turns too quickly. I use a cane for long walks. In may I took Zevalin at Cancer Treatment Centers of America as tumors had come back under my one arm pit. I guess they are gone now. I am 74 and also have arthritis and fybromyalgia that causes pain. I am however, fortunate to be able to get around, drive my car and work part time. I guess having neuropathy is little to pay for getting rid of the cancer. Some people I have talked to do not have this side effect. I have to say however, that I have had some of it in my feet for as long as 8 years ago, so I guess, the chemo just made it worse. I hope for the best for you. Hi thereI came across your message on the Cancer Compass website after googling the main symptoms being suffered by my dad.He's 61 and was diagnosed with NLH in April 2005 (stage IV). since then he's been having chemotherapy in relatively short, but intensive, spells. steroids have also been part of the treatment mix.more recently, however, he's been in considerable neuropathic pain in his legs. Classic symptoms like lack of balance, and "pins and needles" sensations were the start of it, but it's got so bad recently that he's now unable to walk. he's also recently been diagnosed with a deep vein thrombosis stretching from groin to knee (which is being slowly dissolved by injectable drugs which are not going to exacerbate the effects of the cancer).He's now in hospital for some respite care (and also giving my mum some time to herself because she is his primary carer because they live some 200 miles away from my wife and I), but I don't know what the long-term prognosis is. His specialists are not as forthcoming as we'd like, and as a family we are struggling to know what to do.Any help, advice, treatment ideas for the neuropathy would be so gladly appreciated. I hope things are looking up for you too - you sound very positive, which is clearly vital. Best wishes Ian ShoesmithLondon, UK shoey1975 Tue, 10 Jul 2007 00:00:00 GMT I can't seem to find your posting about peripheral neuropathy.  Any suggestions you may have would be greatly appreciated. Eva  Pault Wed, 25 Jul 2007 00:00:00 GMT YEA MY LEFT FOOT IS TOTALLY NUMB I REALIZED IT WHEN I WAS ABLE TO TAKE A BATH AND MY FINGERS WERE NUMB THEY DIDNT FEEL THAT THE WATER WAS SO HOT. i ABOUT SCALDED MY FOOT AND APRT OF MY LEG ITS BEEN 8 YRS SINCE CHEMO AND ITS NOT GOTTEN BETTER..AND THIS CHEMOBRAIN OMG I FEEL WILL FORGET WHO I AM lastangel4one Thu, 06 Sep 2007 00:00:00 GMT  On 4/4/2007 Shoeshoe wrote:I am a 5 yr. lung cancer survivor.  I have two thirds of my right lung gone.  I  am in my 70's and excersie regularly   My NEUROPOTHY is getting worse.   Does any one have an answer   My neurologist has tried different medications.  Nothing seems to work.Shoeshoe,  my lung cancer have been in remission for 12 years now last august 8th of this year. I never had the problem of any kind from my surgery and radiation. My ordeal begun after 2 months of chemo which I already recieved 6 rounds on feb.1996. All of the possible side effect anyone can imagine was being felt from nerves to muscle pain. Here it is 12 years later, I'm still suffering from it. I have been in pain killers and anti anxiety drugs for about ten years now. I tried to minimize the use of drugs for fear of drugs may not work after so long. I only take them when pain is so unbearable. for the first 5 years, I was using 375mg of vicodin es twice daily. after a while, I have to up it to 4 times daily. now i'm approaching 11 years under that medication, I have to up it again to 5 times daily. It does not take away all the pain but It was minimizing it to I was able to live a more quality life. I trully believed it is all up to individuals system how it reacts to different situation. I have tried many drugs and only found two that helps me.  aprasolam to help me sleep and half a tablet for pain maintanance. I'm sure you will find some relief for you. just keep on asking your doctor to try and prescribe you different one's until your system respond to one of them.  I hope you find one. wish you the best. buang  buang Sat, 06 Oct 2007 00:00:00 GMT My husband has had 6 rounds of chemo (FOLFOX); his neuropathy began almost immediately.  It no longer goes away for any period of time and he's feeling discouraged by his inability to play football with the kids or golf or type or handle food from the fridge......He's only 37 and he is fearful that this may never subside.  I plan to ask the doctor about Lyrica or Neurontin.  Have you heard of these?  JJSS1 Fri, 26 Oct 2007 00:00:00 GMT I finished chemotherapy(for colon cancer using ox platinum) in June of this year---my neuropathy began 2 weeks when my chemo ended. I had the usual neuropathy during chemo(adverse reaction to cold etc.) but nothing like what i have now....complete numbness in hands and feet...everyone says it is temporary--i began to doubt it...so i went to a neurologist at USC Dr. Engel, he gave me an EMG a muscle biopsy(didnt hurt) and a spinal tap, all in one day(last week tuesday) I will get my results back in a few weeks, he says if he sees anything he can treat it with IVIG but if it is stictly chemo based neuropathy....well we all know the story....i will let everyone know what happens....and yes it is hard to type..donarae Donarae Sun, 04 Nov 2007 00:00:00 GMT Try lyrcia seems to work.. kamkrs Wed, 07 Nov 2007 00:00:00 GMT Hi,Yup! got neuropthy, too. Started after 1st treatment and, initially, went away after a day or 2. Now I am in 9th treatment out of 12 FOLFOX4. The neuropathy has increased and is not going away. Am also getting more of side effects from the Oxaliplatinum Yu-uk!! Most bothersome is loss of balance which started around #7. It is all new to me, too.Everybody reacts differently. But after doing research AND asking my Onc. and chemo nurses, I hear it may "peak" fo a month or 2 after treatment ends, then slowly subside over the course of the next 6-12 months.Re. neuropathy. I am an artist and VERY concerned abouy my fine-motor skills. I have been doing a lot of work during and between chemo sessions (wire wrapping and glass cutting/fusing) in an effort to keep the nerve endings in my fingers stimulated. The Oncologist stopped in today while I was in infusion center getting chemo. He saw me working and said to keep at it and continue even AFTER chemo ends as this will help! Of course, since the jewelry making is also a business for me, I intended to do so. But it was good to have the doc confirm my instincts. Perhaps your husband might take up drawing, clay or wood model-building, or repairing small items etc... angela759 Wed, 07 Nov 2007 00:00:00 GMT  On 7/13/2006 Johannah15 wrote:My dad had surgery for rectal CA and the tumor was a T2-Stage III tumor. He just got his port and will start chemo (FOLFOX) on Monday. My concern for my dad is the neuropathy. He is a bartender and was planning on working throughout his treatments, but when they gave him the gloves that he would need to wear anytime he needed to go into the refrigerator, he was shocked. He did not realize that the neuropathy would be that dangerous for him. He is worried that he will not be able to grab cold beers from cooler chest or make chilled drinks for his customers. They say for the 7 days after your treatment that you have the sensitivity to cold. How soon does this start happening? Right after your very first treatment? Should he consider not being able to work because of the neuropathy? He also golfs and they told him that he could not be in the sun for long periods of time and that 18 holes would be out of the question. They have told him that all of this is only for the next 6 months, but it sounds like it will affect him longer than that. He is 64 yr old and unfortunately did not plan well for the future and he and my mom both still work and rely on their incomes to live. I read about the Glutamine, B-complex and B12 suggest. Any other ideas to help with this matter. We would also be glad to hear about things he should be aware of or things that he could do to make it more comfortable during this time. Thanks for helping. Please tell your Dad to listen to his doctor about the cold sensitivity!! I did not listen and started drinking cold drinks and touching colder things even when I knew I shouldnt. I ended up with a bad case of peripheral neuropathy which I think I made worse by not staying away from cold items.Tell him not to touch or drink anything cold no matter how bad it gets! Nothing is as bad as dealing with the neuropathy, trust me on that!Good luck to you and your Dad, I wish you both the best!]John  joca2002 Fri, 08 Feb 2008 00:00:00 GMT  On 10/26/2007 JJSS1 wrote:My husband has had 6 rounds of chemo (FOLFOX); his neuropathy began almost immediately.  It no longer goes away for any period of time and he's feeling discouraged by his inability to play football with the kids or golf or type or handle food from the fridge......He's only 37 and he is fearful that this may never subside.  I plan to ask the doctor about Lyrica or Neurontin.  Have you heard of these? I had 10 of 12 treatments and my neuropathy started after about 5 treatments and became progressively worse. I found that the sensitivity to cold was a short term effect, even though I was taking treatments through the winter months, most of the time it was handling cold objects and swallowing cold drinks. I would get a sensation like a electrical shock in my hands and feet and my throat felt very constricted if I tried to drink something to cold.After the treatments were completed, I started a course of Lyrica, 75 mg capsules. These helped reduce the nerve pain, but I found myself feeling like I was walking in a fog during the day....not good. My doctor prescribed a lower dosage for the day and I used the higher dosage at night.I also used massage therapy, accupuncture...to no avail and cold laser light stimulation...to no avail. The massage  helped me in the short term as it relieved the knots in my neck and shoulders, legs and feet.Overall, as it has been just over a year since I stopped treatment and am back to fulltime work, I tell people that it is like having pins and needles all the time, some days are worse than others. I still take meds, Tylenol 3 a prescribed narcotic and also Lyrica as I need it. I find that I am able to do most things, I have learned that i need to do some things differently. Don't lose hope and keep laughing at the world....it helps   filling the bucket Fri, 03 Oct 2008 00:00:00 GMT