The Colon Club

Just began a new regime today; went from Xeloda with Iranotican with Avastin to Xeloda with Oxaliplatin and Xarelto (due to pulmonary embolism in last scan and slight growth of one tumor.

Problem: I immediately felt numbness in fingers and cold sensitivity in teeth/mouth. Walking outside (into 19 degree F. weather, I felt very strong pins-and-needles (effect?) in my fingers and soon in my feet. This is, I take it, neuropathy. The finger and foot pain goes away as soon as I get warm, and perhaps it is simply a matter of keeping bundled and covered. But this is a crazy quality of life issue—I am in New England, and work will require me to be inside and outside many times every day—and life requires me to scrape snow from cars, shovel and snowblow. I have been fighting lung Mets since summer of 2014, with CRC since summer, 2013. Not yet willing to cave on this treatment, and still going strong in nearly all aspects of life.

Request: Anyone at Colon Talk have successful strategies for dealing with Oxaliplatin related neuropathy?

I live and work in NH so I feel your pain. I think that it's more cold sensitivity than neuropathy but I get arthritic feelings in my fingers and hands when I wake up which might be related. I work inside but still have to scrape ice and snow and have to walk around when it is quite cold outside. I use a balaclava and ski goggles when it is cold and windy and try not to leave any skin exposed. I also bought an electric kettle because I need water and drinks slightly above room temperature. It is a royal pain (or brutal would be a better word).

I have seen many of our members suffer from the Oxaliplatin with a variety of symptoms, some of them quite long-lasting. I'm just trying to get through winter. There are times when I seriously want to stop this stuff. I do often feel like a WIMP on this stuff. I think that it might be easier if you don't have to work (as in short-term disability or retired), but many of us don't have that as a realistic option.

You have been on a long, tough journey.

Thanks, Mike. Have trouble with the “been on” part...I like to think of myself as at the beginning of the journey. I have been dealing with hand-foot effects of Xeloda for years. The Oxi is bringing this to a new leve. Short-term disability for a person with lung mets on palliative chemo who needs insurance to pay for treatment is really not a possibility. Nor is it psychologically or economically feasible for me to stop working. I am not willing to be defined by this disease; when that happens—when the disease and its treatment become my life, rather than a surmountable impediment to living in *defiance* of my CRC, I will perhaps change my view. But to date, I have muscled through, and hope to continue. Hence, looking for recommendations.

Got a balaclava, gloves and a good jacket. Looking for ways to prevent the “cold sensitivity” and neuropathy from occurring, and ways to tone it down.

Good luck, and I sincerely hope you have no reoccurance.

NHMike wrote:I live and work in NH so I feel your pain. I think that it's more cold sensitivity than neuropathy but I get arthritic feelings in my fingers and hands when I wake up which might be related. I work inside but still have to scrape ice and snow and have to walk around when it is quite cold outside. I use a balaclava and ski goggles when it is cold and windy and try not to leave any skin exposed. I also bought an electric kettle because I need water and drinks slightly above room temperature. It is a royal pain (or brutal would be a better word).

I have seen many of our members suffer from the Oxaliplatin with a variety of symptoms, some of them quite long-lasting. I'm just trying to get through winter. There are times when I seriously want to stop this stuff. I do often feel like a WIMP on this stuff. I think that it might be easier if you don't have to work (as in short-term disability or retired), but many of us don't have that as a realistic option.

You have been on a long, tough journey.

So, calcium infusions (or even oral dosing) seem to have some effect. I am looking for some scientific authority. Found the linked article below that was somewhat enlightening, and will send it to my poor, overworked, indulgent ONC., but wondering if anyone else has experimented with any of the prescription or herbal treatments discussed in the attached NCBI, NIH article.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1661634/

PeterG wrote:So, calcium infusions (or even oral dosing) seem to have some effect. I am looking for some scientific authority. Found the linked article below that was somewhat enlightening, and will send it to my poor, overworked, indulgent ONC., but wondering if anyone else has experimented with any of the prescription or herbal treatments discussed in the attached NCBI, NIH article.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1661634/

I like the article - fairly easy to read for a research paper. I received suggestions from a nutritionist for combating the issues with Oxaliplatin but I didn't listen that well.

I picked up a bag of Gin Gins from Whole Foods this afternoon. I usually feel nauseous a few days after the infusion. They give me anti-nausea drugs before the infusion and they wear off. Ginger helps with that. Could be ginger tea, chews, candies, crystallized ginger, or raw in food. I find that it helps. I saved the paper to read later on. I'm somewhat wiped out this week from work and the infusion.

My oncologist kept offering gabapentin and I kept refusing. I just didn't want another drug in my system; I can't completely explain why. But then my sister was at a party and starting talking with a friend-of-a-friend who was a Stage IV colon cancer survivor and an M.D. She mentioned the neuropathy and he told her to tell me to take the gabapentin because you don't want to set up mental pathways that register "pain," etc. when there is no real source. So I decided to try the gabapentin. It took a few tries to get the right dose: not so much that I felt drugged the next morning but not so little that it didn't have enough effect. (All of these meds seem so Goldilocks to me.) I finally settled on 300 mg. in the evening which doesn't completely eliminate the neuropathy but takes the edge off.

I hope you're able to find some relief.

Thanks Zephyr. I had read that Gabapentin was found not to work on neuropathy. Willing to try whatever is effective, I suppose, but I had read the 2007 American Cancer Society article from 2007 that I am attaching below that seemas to indicate that it doesn’t seem to help—double blind study. Do you know of other literature on this? http://onlinelibrary.wiley.com/doi/10.1 ... 8/abstract

zephyr wrote:My oncologist kept offering gabapentin and I kept refusing. I just didn't want another drug in my system; I can't completely explain why. But then my sister was at a party and starting talking with a friend-of-a-friend who was a Stage IV colon cancer survivor and an M.D. She mentioned the neuropathy and he told her to tell me to take the gabapentin because you don't want to set up mental pathways that register "pain," etc. when there is no real source. So I decided to try the gabapentin. It took a few tries to get the right dose: not so much that I felt drugged the next morning but not so little that it didn't have enough effect. (All of these meds seem so Goldilocks to me.) I finally settled on 300 mg. in the evening which doesn't completely eliminate the neuropathy but takes the edge off.

I hope you're able to find some relief.

I’m almost 5 months out from my last round of chemo. The neuropathy was at its worst around 2-3 months after my last round. At that point my hands felt so numb that I couldn’t button my shirt, tie my shoes, write or type. My feet were so numb that driving became difficult because I couldn’t tell how hard I was pushing the pedals. 5 months out now and everything feels a bit better. I still have the numbness and tingling in my hands and feet but at least it’s got a little better and I can do all the things I couldn’t do a few months ago. I haven’t found anything that makes it better besides time.

Hi Peter,

Sorry to hear about the neuropathy. I had it worst during winter 2014 in Boston - I feel your pain! Acupuncture was the best thing I did during that time. It didn't cure the neuropathy, but it did really help relieve the pain. I knew it was working when I missed a week and all those painful tingles intensified.

Good luck!

Kara