Neuropathy From Oxaliplatin

 

On 2/1/2005 Biscuit wrote:

I have terrible neuropathy in my feet and legs from Oxaliplatin. I can no longer continue with treatment. Neurontin doesn't help me. I have pain and numbness that stops me from living. Has anyone dealt with this terrible conditon?

 

I also had the oxaliplatin and was told that i would have some neuropathy during treatment,but nobody ever told me it would last so long.I finished my chemo 5/06 and the pain in my hands and feet is 24/7.I have seen neurolegists and they say i can only try to manage the pain and gave me methadone,great now i can be in pain and be a junkie too.I did take the pills once and they made me ill for 2 days.I have heard that b12 injections are having some promising results so i suugest you talk to your encologist about doing a b12 workup and see if that is something that may help.At this point i would try anything,but i'll tell you this had i known the neuropathy would be so bad i would have passed on the chemo.....good luck....."Q"  

I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally.

Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. 

I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts?

 

On 3/15/2007 Dabblerz wrote:

I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally.

Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. 

I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts?

 

I am lucky to have found this forum. I was searching for info on neuropathy caused by oxaliplatin and found this site. In reply to your post, I am almost nine months post chemo treatments ( I had colorectal cancer, stage 3) and my neuropathy seems to be getting a little worse. The 'tingly feet syndrome' hasn't let up since it began, and my nerve endings feel like tiny needle pricking on occasion. I have been taking extra strength over the counter pain relievers. I may either ask to see my oncologist early  or wait for my scheduled appointment (May 15). Not sure if he can help, as he usually downplays my neuropathy complaints. I am happy to be alive, but  what a painful life. I now get pain and numbness shooting through my arm from my shoulder to my fingertips. May just be arthritis but someone please if you had same do tell. I hope that everything improves for you.  it used to be that I could forget about the pain and tingling if I stayed busy, but now that the arthritis-like pain  has come I am having a pretty bad time.  Good health to all of you here.

kenkd.

 

On 4/9/2007 Kenkd wrote:

 

On 3/15/2007 Dabblerz wrote:

I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally.

Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. 

I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts?

 

I am lucky to have found this forum. I was searching for info on neuropathy caused by oxaliplatin and found this site. In reply to your post, I am almost nine months post chemo treatments ( I had colorectal cancer, stage 3) and my neuropathy seems to be getting a little worse. The 'tingly feet syndrome' hasn't let up since it began, and my nerve endings feel like tiny needle pricking on occasion. I have been taking extra strength over the counter pain relievers. I may either ask to see my oncologist early  or wait for my scheduled appointment (May 15). Not sure if he can help, as he usually downplays my neuropathy complaints. I am happy to be alive, but  what a painful life. I now get pain and numbness shooting through my arm from my shoulder to my fingertips. May just be arthritis but someone please if you had same do tell. I hope that everything improves for you.  it used to be that I could forget about the pain and tingling if I stayed busy, but now that the arthritis-like pain  has come I am having a pretty bad time.  Good health to all of you here.

kenkd.

 

Thanks for commenting on my posting.  I have recently been getting the pains in the joints.  I don't think it is arthritis as I didn't have that before and other people in this forum have had these pains.  It hasn't been too bad, but I am on a pain medication called Hydromet, which I use for other things.  I just try to keep active, which helps.  The pain seems to be getting worse, so we will see what happens.  Stay in touch. Let me know what works.  I haven't seen a neurologist yet.  I will let you know the results when I do.

Take care,

Ron 

 

On 4/9/2007 Kenkd wrote:

 

On 3/15/2007 Dabblerz wrote:

I had rectal cancer and had radiation, rectum removal, and folfox for 6 months. I had probably a average neuropathy from the Ox during chemo: numb tingling hands and toes, my tongue felt I was drinking crushed ice when drinking cold liquids (which had no ice).  I don't know if that symptom has been mentioned before.  I didn't have the feeling of not being able to breathe when drinking cold liquids though.  Well, I never tried cold liquids for any length of time.  I had some problems of feeling something similar to an electrical shock down my legs occasionally.

Well it has been 2.5 months since I finished the chemo and the neuropathy has become progressively worse.  It has reached a point where I can touch a certain part of my forearm and get the tingle sensation.  My toes feel like there is a rope around them when I move them.  I also get the tingle when I touch parts of my leg near my shin.  I still get the electrical shock feelings down my legs and only yesterday did I associate them with bending my neck down. (Someone else in these posts had the same thing.)  My balance is affected and my feet feel like wooden feet when I walk. 

I plan to see a neurologist soon. Thanks so much for these blogs.  I feel some relieve knowing other people have had those problems, but disheartened to know that some have lasted up to a year.  I saw a article that this might permanent, though that is rare.  Has anyone found an average time that post chemo neuopathy lasts?

 

I am lucky to have found this forum. I was searching for info on neuropathy caused by oxaliplatin and found this site. In reply to your post, I am almost nine months post chemo treatments ( I had colorectal cancer, stage 3) and my neuropathy seems to be getting a little worse. The 'tingly feet syndrome' hasn't let up since it began, and my nerve endings feel like tiny needle pricking on occasion. I have been taking extra strength over the counter pain relievers. I may either ask to see my oncologist early  or wait for my scheduled appointment (May 15). Not sure if he can help, as he usually downplays my neuropathy complaints. I am happy to be alive, but  what a painful life. I now get pain and numbness shooting through my arm from my shoulder to my fingertips. May just be arthritis but someone please if you had same do tell. I hope that everything improves for you.  it used to be that I could forget about the pain and tingling if I stayed busy, but now that the arthritis-like pain  has come I am having a pretty bad time.  Good health to all of you here.

kenkd.

I went through chemo for colon cancer until mid - July 2006.  I was warned of the acute neuropathy that occured during treatment - and indeed experienced the sensitivity to cold (drinks, weather, etc....).  What I wasn't aware of was that neuropathy could continue past treatment.

 As you have so well described, the neuropathy progressively worsend after treatment.  It moved from cold sensitivity to a general numbness in extremeties.  It started in my fingers and toes and when at it's worst extended above my elbows and knees.  My oncologist was surprised at these results - although my research indicated that this ramp up effect was quite common.  At it's worst, I could not button, zip, and was having some balance/walking issues.  The good news is that it peaked at about 4 months past the final oxaplatin treatment and has reached a manageable level.  At about the 7-8 month mark past chemo it seems to level out.

Generally, I find that it is worse when I don't get enough rest or exercise, when it is cold, and when I drink  alcohol. to excess  At the onset of the post-chemo neuropathy, I stopped alcohol alogether at the request of the oncologist and found that it had little effect (except to depress me!).  I visited a neurologist several times and he said that I was lucky - a very mild (his words, not mine) case.  All I do now is try to keep active, rested, eat well, and stay positive.

I have a friend who's dad is receiving some new treatment for severe neuropathy that seems to be working well.  I'll find out more and post it later.

Best to all.

Dave

 

I too have the same effects...1 more cycle after this week will complete the 6 momth progran following sugery for colon cancer..tempory ostomy to be reversed in about 1 1/2 months....looking for info on lifestyle issues following rectum removal and reversal of ileostomy...what is normal following reversal?....frequency of bowel movements, incontenance? other difficulties...Any info will be greatly appreciated...dd

After reading all of this I can hardly wait to start my folfox treatment in December or January.  I'm just on week four of 5FU continuous and radiation, then surgery then the 6 mos. of Fofox.  Does everybody get the neuropathy?  It sure seems like a lot of people do?  I haven't received any side effects of the 5FU except the tiredness so maybe I won't get the neuropathy.

 

I hope you all get healed!

Terry

Hi Snowmom60, The neuropathy is cause by oxaliplatin, a substance you are not currently receiving. My father had mild side effects from folfiri (5FU), but progressively bad peripheral neuropathy. His oncologist is considering a break in oxaliplatin for a few months to try to avoid permanent damage. Which brings me to my question to others: what comes after Folfox? Thanks for your posts, you all have become my best source of information!

Hi Janie,

 

I'll be getting the oxiplatin along with 5FU and Loucavrin after my surgery.  You asked what's after the foxfire(? is that correct?), in my case that will wrap it up so maybe that's it for your father too. 

 

Your right this site is a great source of info.  Tomorrow is my last radiation treatment, YEAH!!!!! and my 5FU will be DC's Thursday, YEAH!!!!

 

Take care,

Terry

Hi Terry,

I am so hapy to hear you are close to the end of treatments. I hope you get the most boring scan a doctor has ever seen after that!! (I have come to really appreciate when they say -normal aspect of the rectum, liver, lungs, etc...).

Considering the pretty scary side effects of the oxaliplatin, we are wondering if my father should go back to folfori (5FU, leucovorin, irinotecan) in combination with Avastin. Folfiri seemed to have lost its power over the cancer, but there was no Avastin in the mix...

We are also considering a break in chemo to rest the body, but are wondering if oral 5Fu might be a good "support" chemo for a few months. My father has very little side effects from 5FU so we think it might help maintain the metastases and recurring tumor at a stable size while he gets the needles out of his fingers and feet!

Has anyone ever done the oral 5FU as part of a "resting period"?

Thanks!

Janie