Aqx99 wrote: For anybody that has taken or is taking gabapentin, what can I expect? Side effects? How much improvement have you seen?
Soccermom2boys wrote:Aqx99 wrote: For anybody that has taken or is taking gabapentin, what can I expect? Side effects? How much improvement have you seen?
I finished my 8th and last treatment of FOLFOX on June 2, 2016. All 8 were the full dose of Oxaliplatin. I had only just started to feel any tingling in my toes the week before my last treatment so it was never an issue prior. My fingers would have issues with cold sensitivity every week I had treatments, but would be fine by the off weeks. Well by July of 2016 the neuropathy started to really kick in for both hands and feet. It progressively got worse all summer long (to walk barefoot on grass or sand, etc was very painful). I will say I never dropped things or fell down, but none the less it was debilitating and painful in it’s own way. At my follow up appointment at the end of September with onc’s office, I was prescribed 100mg of gabapentin once a day. Did that for two weeks and felt zero difference. Called them up and they prescribed 300mg once a day. I believe I took it in morning. So I did that for two weeks and noticed ever so slightly that it took the edge off so I called office up again and was prescribed 300mg twice a day. I think I took it at say 7am and 7pm as I head out to work at 7 (I am a high school teacher). It took the edge off, but it by no means made a drastic difference with the pain/annoyance of my neuropathy. I definitely felt like a zombie and thankfully I happen to be a part-time teacher in that I only teach half a day and am done teaching by 11:30. I would eat lunch with my friends and when I would come back to my desk at noon I was in full zombie mode and many times would just fall asleep sitting up at my desk. I just always felt like I was in a haze. So I did that 300mg twice a day from around late October 2016 until some time in early April I believe. It wasn’t that the neuropathy was gone but I could tell a slight improvement that I dropped down to just one 300 mg dose of the gabapentin daily. Talk about getting your head out of the clouds, it was like night and day how I felt by dropping that one dose. When my prescription ran out around June some time I just decided to let it go. It wasn’t making my neuropathy any better and I just hated how it made me feel mentally.
I am just over 18 months out from last treatment and I am thinking I am the person who will have permanent damage that they say is rare. Sigh. By no means is it a worst case scenario, just a daily annoyance and can be painful at times. I got a Shiatsu foot massager for Christmas hoping that the daily message/stimulation might help, but honestly not expecting a cure. Fortunately I can still walk for miles and miles (and run when I can) and the neuropathy doesn’t hinder that. I don’t like wearing socks generally as that ends up making feet hurt more with the way they rub while wearing shoes. Last Christmas my husband insisted I spend the money on a pair of Uggs boots and while I initially resisted, they have been my best purchase (now have three pair, LOL). You wear them without socks and the shearling inside makes my feet feel warm and toasty (I live in northeast area of US so winter has been chilly here so far to say the least!) and feels like you have slippers on.
As for my hands, by early spring (2017) they were pretty much back to normal. I will have mornings when I wake up that my hands feel stiff, but no pins and needles feelings.
Your story sounds exactly like mine. Was fine during chemo for the most part but kicked in about a month after I finished. I never had real pain just tingling and numbness. Hands are pretty much better, although, I had Raynaud's even before cancer so that is still an issue. Must keep them warm. My feet are just uncomfortable barefoot on hard surfaces so usually wear shoes or slippers. I'm almost 2 years out of treatment so I am not expecting it to get better. I also have a massager that feels pretty good while doing it but goes back after done. I also have a mat with little spikes that I stand on in the shower that feels good as well. I haven't been hindered doing anything I still run and walk so just tolerate it and have gotten used to it. Yes, my ugg boots are my favorite. I have two pair.
Wishing you all the best with your neuropathy, may it be a fleeting memory.
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