Neuropathy From Oxaliplatin

Hi Everyone,

I'm new to this board, but not cancer. I was diagnosed with stage 3 colon cancer two years ago, had a resection, my colon burst  a week later, and then they reversed my colostomy one year ago.   Regarding the oxaliplatin treatments, I'm a wuss compared to everyone here. I could only manage 5 treatments before I had to stop, and my oncologist reminds of this every checkup I have.  I know my survival odds have decreased considerably because I stopped the treatments early, but I just couldn't do them any longer.  You all have provided some incredible inspiration to me and I appreciate it!

Dale

Jeanne, your message was very informative. It appears we are experiencing very similar symptoms. It has been difficult to find details of possible treatments. My chemo ended March 08 and I have been trying all options I could without success, you have offered more options, Thank you. 

This site is great, there appears to be more discussion in  US, I have had little luck here in Australia.  It is a difficult condition to deal with given it's impact on everyday tasks such as getting dressed - hard when you live alone. I am wondering how others cope and what has helped them.

 Marie

Marie, What kind of cancer did you have? Congratulations on being a survivor! I also was surprized by the lack of discussion on this site about neuropathy-- unless I am missing it! The letter I responded to was from 3-4 years ago. I have another PET scan tomorrow and I am very scared of what the results will be. I have had a wonderful summer with no chemo so far, just the neuropathy which still seems to be getting more bothersome as time goes by. How many treatments did you have? Jeanne

Whew...what a relief to find this site today!  I've been online since my neuropathy started kicking in after I finished 9 months of treatment for Stage 3a colon cancer in February 2009, trying to find a solution.  My therapy was a resection to remove the tumor and then 6 weeks of radiation (5x a week for 6 weeks) while wearing the pump with straight 5fu simulataneously.  After that I did 8 treatments of folfox with the 5fu and oxaliplaitin and occasionally leucovorin, although they ran out of their supply of the latter early on.  They stopped me at 8 because I was needing transfusions to try to increase my blood count. 

I tried the gabapentin/neurontin for a couple of months with no results.  Then I did 10 sessions of far-infrared sauna (no help) and switched to Lyrica, which I just stopped taking.  I realize since I stopped taking it that it was helping to tamp down the screaming nerves in my feet but I am just finishing my first month of a new job in my field of retail and I was getting too fatigued.  I keep trying to find shoes that I can walk in but it doesn't seem to matter much what shoes I wear, since my feet hurt even barefoot or in flat sandals.  I am concerned because I have a round of trade shows coming up at work and I have to walk miles during a day.  I haven't confided to my new boss the fact of my cancer experience because I didn't want it to weigh in on her decision to hire me. 

Hey, really, I'm just glad to still be here, to be functioning, to be able to have kept my house, to have a new job (I got laid off after my cancer diagnosis but there's no way I could have worked during treatment) and to have had 2 clean PET scans and a clean colonoscopy just since stopping chemo in February.  I can tough this out...I do have a high pain tolerance after 3 abdominal surgeries in the last 5 years...my oncologist shrugs and says all they can do is send me to a pain specialist, which I may investigate, but I don't do well on pain meds and would rather not deal with them.  Ibuprofen does nothing to help.  One nurse who is in medical school told me that peripheral nerves can and do rebuild and heal, just very very slowly.

This phenomena can't be as rare as they say.  I have a high school classmate in AZ (I'm in Vegas) who went through the same treatment I did and is having the exact same response to the Oxali. 

I am glad to know that I am not alone in this crazy phenomena and others are looking for the best way to handle it too!

Magick, Wow - you have been through a lot and are still doing a lot!! Congratulations on that! About the feet pain, I have discovered that bare feet and little support like sandals bothers me more for osme reason. For me the essential feature is either shoes that have a lot of squishy padding on the part that touches my foot, or a tie shoe like my good running or walking shoes with socks that have a small soft weave rather than big cotton weave, that helps to spread the pressure on my feet around my whole foot and ankle. Also, as you read for me, taking a very small dose of Oxycodone (3 - 5mg tab once or twice a day) helps me deal with the nerve pain. My pain doesn't seem to be as intense as yours, (I wouldn't call my foot pain "screaming" for instance), but I know what you mean-- I don't have a high tolerance for pain and am aware of every little twinge and difference. and yes, you are cancer free-- congratulations on that.!!! I hope it is true that the peripheral nerves keep growing back little by little - I'll take that. I am starting chemo again next Wed. with folfiri - a combination of three drugs. Not looking forward to losing my hair again! Jeanne

Hi Nancy...I'm wondering how, more than a year after your last post, you are doing with your neuropathy.  I was also colon cancer Stage 3 and am 9 months out of treatment.  I just saw a new pain specialist at the Nevada Cancer Institute, where I received my treatment.  She upped my dose of Lyrica and prescribed a mild anti-depressant to take only at night.  She says new studies show that a combination of these two drugs is somewhat effective after a couple of weeks.  She also claims that 4 years after treatment 80% of chemo patients are reporting little or no neuropathy.  So since you're almost 4 years out of treatment I'm wondering how you are doing.  I trust that your scans continue to turn out clear.  -Another Nancy

Hi Jeanne...just wondering how you are doing now...-Nancy