My Colon Cancer Story And That Nasty Neuropathy

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!

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

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

Leroy, have you continued the L-Glutamine drinks? Any results you can share?

Thanks,
Bob

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,

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.

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

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.

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

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