Neuropathy From Oxaliplatin

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.

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.

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]

Thanks for your response. I will look into the websites you mentioned. Stay well.

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.

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)

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.

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

Please see my post on this subject. I posted it today 11-30-6.

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.