Neuropathy

In this discussion
Replies
5
Views
5945
klark
Chemo treatments for colorectal cancer left my hands and feet numb with neuropathy. Pre surgery I took leucovorin in pill form, was also recv'ing radiation at that time. Post surgery I was getting (IV) leucovorin again, oxaliplatin and 5-FU. Post surgery was 13 treatments every other week, took about 6 months!! Was terrible in the beginning numbness in my mouth, tongue and lips. Palms of my hands and bottom of my feet no feeling at all. In a few months my mouth was ok, and I could enjoy a cold drink and eat ice cream. Most of the feeling came back in my hands except for my fingertips, I really suck at buttons and zippers LOL. After almost 4 years now there has been no improvement with my feet. No feeling... nothing! Best way to describe it is it feels like my socks are full of sand when I'm wearing them. Barefoot I can't even take 2 steps on concrete or asphalt at all in the summer. Smooth surfaces to walk on like ceramic tile are ok, grass and carpet in the house are ok too. My doctor seems to be convinced feeling will come back and advises patience. One of the oncology nurses told me to try Vitamin D and Magnesium about a year ago which I did and it didn't seem to work at all. To make matters worse... it's worse in the cold weather and I live in Jersey. It's been around freezing or colder the past couple of weeks and snow is on it's way in the morning. I stay in alot in the winter.

I'd be really interested to know if anyone on here also has neuropathy issues and what your doing, if anything about it. What seems to work... what doesn't. Just wanted to vent!!! LOL I'm not even sure this is the right place to post this, if it's not apologies to the admin. Thx for listening... Kevin
Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,086 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

hometown
OMG Kevin, I have almost the same thing you have. I had colon cancer and surgery and received the same treatments and live in NJ. My feet feel like I am walking on sand also and my socks always feel horrible I keep thinking my socks are wrinkled but they are not. My finger tips are good most of the time but some days they feel crappy also. It is 4 years for me also and I think we are stuck with this type problem. Kevin, I have met many people at the Cancer center I go to for my checkups and they are worse than us so I feel that I am lucky it is not worse. Oxaliplatinum drug does this and when my oncologist saw what was happening at my 11th treatment he stopped that drug and that made a big difference. I hope you do get more relief but I doubt it Good Luck Hometown Joyce
Gray Logo for MeetAnOstoMate
dsmithsc91
I've been done with treatment for three years and have tried many things to help with my neuropathies. I've been fortunate in that both my hands and feet have improved during that time. When I first finished treatment I would say the sensation in my hands was about 50% of normal and my feet were 25%. Over time those figures have progressed to 90% in the hands and 75% in the feet. It's hard to say if the progress is due to anything in particular I'm doing. I had read that evening primrose helped, so I took those for quite awhile and was convinced they were making things better. I ran out about four months ago, went a few days without and didn't notice a difference, so I've stopped altogether. Not sure if the improvement I felt with the evening primrose was real or a placebo effect. Anyway, I also stretch a lot... at least once a day and that seems to improve things. Also, I've noticed that when I eat foods generally considered to be anti-inflammatory such as leafy green veggies the neuropathies feel better. Conversely, if I eat a bunch of sugar, or other foods that inflame the system the neuropathies tend to feel worse.

Good luck
klark
Joyce and dsmith... thank you so much for replying and sharing your experience with neuropathies. That is a spot on description of how my feet feel too, socks wrinkled up in your shoes. I'm pretty fortunate in the fact that I can eat just about everything I was eating before the cancer, but my diet could be a lot better minus the sweets I guess. Now making it a point to eat healthier, less sugar, although I do love ice cream LOL!! My hands are improving, however the bottoms of my feet have not. I guess it could be worse!! Time will tell... thanks again and Happy Holidays!!
Tootie
These posts could have been written by me.. Had my permanent colostomy 2008 for cancer and also had the neuropathy in my hands and feet..hands are fine now but I can best describe my feet like walking in the ocean and then sand and then putting sneakers on, very sandy, gritty feeling. I do take Vit D and magnesium and I think they help. It also helps to keep my feet warm. My oncologist tells me if it hasn't gone away after two years, it probably won't ever go away.. Oh well, small price to pay to be cancer free !!!
 
How to Manage Emotions with LeeAnne Hayden | Hollister
gutenberg
Your stories sound like I could have written them myself. But in my case all this happened on Sept 26, 1984 and the day before I had none of these symptoms. I'll try to shorten this little episode, at the time I was going to a pain clinic (aptly named) because of a herniated disc and after two spinal surgeries was not about to go through another. In any event, at the outpatient surgery I was given four needles in the thoracic spine and six in the lumbar area, and these were just to deaden the pain before the BIG needles were to be administered, everything went ok with the thoracic injections and a ouple of the lumbar ones and then it happened, this doctor either missed with the first needle or ran out of the medication, anyway when he hit my spinal column with that big needle I went flying off the table, with this big hypodermic still stuck in my back and the doc had to run around the table yelling at me not to move because I still had this needle in my back and when he pulled it out I said "we're finished" and I think he understood exactly what I meant. And now the next day all this shit begins to happen, my feet were always freezing and like some of you the bottom of my feet were driving me up a wall, all pins and needles and the feeling my socks had slid down and were gathered around the bottom of my feet, and the cold wasn't bad enough but whenever I would mention this to someone I always got the same response, poor circulation, yeah, sure, WTF, you must be right, sure, but I no longer try to explain all this crap because now its even worse since last year I was diagnosed with Peripheral Arterial Disease in both legs just to add to the misery and all this happened before the big screwup when I had surgery for an abdominal aorta aneurysm and five weeks later I almost died, so I was told because this hit me so fast I only remember being put into an ambulance for a 150 mile trip to see more surgeons and after they opened me twice one surgeon found out my colon was dead, so good bye colon and ten days later I wake up with this new apperturance hanging from my belly and when they finally pulled that damn pipe from my throat I think I used my extensive vulgar vocabulary yelling at my family for letting them do this to me, until one of my brothers finally said, "what the hell were we supposed to do let you die", so OK he had me there and acceptance became somewhat easier to deal with, except when I get back home those famous blockages started and after a few hospital stays one of the local surgeons said "I can fix this for you Ed but it means one more surgery" hell I had no choice and went for it and lo and behold he did fix this up by removing more of my illium but I never had another blockage, those damn things were worse than any recent surgery, and so with that taken care of this damn arterial disease only makes my feet worse, yeah, I know, poor circulation, my stoma, hey that sounds better than my arse, and that's part of my story and right now I have to remove my slippers and try to straighten out my socks, y'all take care, Ed
All times are GMT - 5 Hours