Dana's Cancer Blog

Gabapentin for life?

I had weaned myself from gabapentin around the time I started pelvic floor PT but over time I felt that the constant stabs, itch, burn and other little pains continued (especially at bedtime) so in discussion with my primary care doc started up 300 mg of gabapentin in the evening. It seems to be helping with those symptoms. Is anyone else on long term gabapentin?  

Nicole likes this post.
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Hi Dana. I'm on Gabapentin since 2018. My neuropathy is still there, so I have to take it tree times a day.
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These symptoms have kept me up all night, but it's gotten a little bit better lately, since I switched to a hypoallergenic soap. I also soak my legs in warm water and wear sox at night. I find when these symptoms start, the whole body will start to increase in pain, even the old chemo port site, joints and all.
I’m sure there is a connection that I used to get hot feet my whole life, but a year after treatment I started having neuropathy, cold feet and all these symptoms.
My sister has used gabapentin for 20-30 years. I've not tried it yet.
Are you having side effects?
Kim likes this comment
No side effects that I know of but I’ll be watching to see.
My port site hurts all the time. Has since I got it in five and a half years ago. I had it taken out five months after treatment ended it hurt so bad. But it still hurts all the time. You’re the first person that has mentioned it. I thought maybe it was just me.
Easterly likes this comment
I had the pain on both sides, because the doc started on the left side, failed, and ended putting on the right. He didn't know what he was doing. I asked him before he started if he knew how to do them; he joked "I looked it up on the internet"----not funny! especially since it turned out he had to get another doc in to finish.
It was basically on fire the whole treatment. I too, got it out asap. It's a deep hole, but it's getting less over time, (left side is barely evident) I worked for this department and felt very dehumanized through the whole rest of my time there.
I've just been told about a external pain relief (over the counter) Lidocaine pain strips; you can cut them up (tiny for a spot like that) they last up to 12 hours, and nothing internal. It was excellent on a shoulder spasm. I think I will try them next time it bugs me.
Nicole likes this comment
Thank you for the information.
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sorry to hear this, sometimes my port site feels like something is pulling from the inside, it is sporadic and annoying, it has been 5 months since mine was removed, the doctor said it is scar tissue build up.
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It's wierd how it's "build up" yet it's an empty ditch. ?? I've been told that too, and to massage it to get it to break up.
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First post

i've read a few other blogs and i appreciate them all.  I think the toughest thing for me is the continuing side effects. I'm more than 2 years post treatment and I can't get over how much my life is still impacted every day.  I'm getting pelvic floor PT for the anal pain and constriction from scarring and i'm seeing a urologist for unfortunate changes to my penis.  Things I either don't want to talk about with friends or they don't want to hear about - so pretty alone in this.

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I'm so glad you posted! Welcome!
Yes, side effects! For me, it just feels like providers are done once the treatment is done. My list of issues has grown, not that any provider even checks beyond the immediate issue. I think the inability to talk to friends and family is so typical. It's a hard thing for them, to think about (body part)& they want us to just be done with anything to do with cancer. Shoot, most providers still won't even say the word, and say colon cancer, or yesterday one said rectal...(close, but different, I said)
We don't have many men at this blog, I always have thought they are hanging out on men only sites. I'm curious; when you had the radiation, do they protect the penis? It would seem there would be a way to do that, since it is external.
I hope the PT goes well for you.
Thanks for your helpful message. I have many of the same experiences with providers. Regarding radiation and the penis, the just looked to see that it was up toward my belly. I naively thought the radiation was very directed to the tumor. I’m not aware of any men only sites. That would be interesting to read.
Easterly likes this comment
Dana, I just realized I read your post on the main screen. Normally, we get an email that a new person has joined- but, it only goes out on Tuesdays. So, unless others go to the main screen, plan on getting many more responses next Tuesday. Also, a way to get in touch is to click on the "member" button (top left) then select the anal cancer default, and other default that you choose. (you might want to experiment with defaults) You can pull all the anal cancer people or certain stages or other. If you select each of the individuals "support" button, they get an email, and will know you are here.
Please post another message next week, so everyone can join in.
Well, hopefully you’ll get others to greet you soon!
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I hear what you are saying. After a year or two, most of our friends and loved ones just see that we are still alive and not that our affected body parts are permanently maimed. Everyday is a constant struggle. Glad you found this blog and if nothing else, at least you can vent all your concerns and we are reading them.
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So sorry you are dealing with ongoing side effects. Glad you have joined this group, where we talk about it all. I wish you all the very best as you work through these challenges.
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You are not alone in one sense...a big crowd of us here all sharing the same problems and want to help!...sorry to tell you but I have some side effects over 12 years out...but far less than they were at the outset. I still only know one anal cancer patient/survivor in person, and most people don't want to hear that name. So we just soldier on. There is little research support for work on side/after effects. In the UK it's known as Pelvic Radiation Disease...at least they're more honest about it! The HPV and Anal Cancer folks are doing some work in the area, and it's worth checking out their website. Hang in there and keep posting!
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Yeah, I hear you. How much to tell friends....fortunately I have few nurse friends, so that helped a lot. I'm a nurse also, so feel free to share. We've seen so much, it's our regular talk 🤣.
The side effects are the worst as far as I'm concerned, but I continue to have improvement as time goes on. And I've used this group to open up to and what a great support group!!
Stay close to us, we are here for you!!!
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Vital Info


January 27, 2023

palm springs, United States 92270

Cancer Info

Anal Cancer

squamous cell carcinoma

August, 2020

Stage 3C

That it is always with me - even after it is gone.

I'm strong but have my limit.

Take care of me - consider what I'm still going through.

Eisenhower Health

November, 2020

small rough patch with a little bleeding

5-FU plus mitomycin; mostly weakness, nausea

Sept-Oct 2020; too many side effects to mention here


Posts: 2
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Events: 0
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