Gabapentin is for nerve pain, when it's prescribed for pain. It might not be covering all you need, while still doing some. (I react badly to it, but I know others for whom it was a big help.) Near the end of my treatment I discovered I could have Fentanyl in patch form ... THAT was a big help. (I was already at the point of having other people drive me to treatments, so no worries about driving while on too many meds ...not sure if you are driving yourself or not, but this is a good time to call in favors if you haven't yet.)

Also, can't recall ... do you have any variation of the 'magic mouthwash' yet? Usually has lidocaine and other stuff, varies from place to place, but sometimes it's the only thing that makes swallowing bearable. If you don't have that, ask for it ASAP. We all get it and we all need it. It numbs the mouth and throat a bit. Wears off quickly if you're eating and swallowing at the same time (since its purpose is to coat and numb), but there's usually not a limit on how much you can use to get you through a meal. It's not perfect, but it does help.

Keep on keeping on! You're ahead of where I was, if it makes you feel better ... I was already having to rely on my PEG at that point, and the only reason I wasn't on more painkillers was because nobody told me I could have them ... I definitely would have been asking if I'd known there were options. We've had some real power warriors come through lately ... but all our journeys are different, so don't play the comparison game ... you do the best YOU that you can do, and the point is to get through it. Survival is the win, and that's your goal. It's nice if we get the easier path, but so long as we get there, the rest will pass eventually. ((hugs))

ETA: I see now where you say you do have the lidocaine ... hmm ... are you doing swish and spit, or are you swallowing? Can't recall if it's okay to try to swallow (been too long for me), but in your case, it might be worth a little bit just to see if it helps. This is a good one to call and ask a pharmacist ... they are good at knowing what different meds can and shouldn't do.

Last edited by KristenS; 05-27-2019 10:22 AM.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery