Gabapentin for butt burn, thinking its nerve pain

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midlifemom
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Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Gabapentin for butt burn, thinking its nerve pain

Postby midlifemom » Mon Aug 15, 2016 3:48 pm

Hi all.

I've been through 6 months of folfox - what neuropathy in hands or feet i had gradually disappeared. I've had approximately 1.5 years of folfiri. Yes, had the diarrhea, but easily controlled - maybe maxxing out at 3 lomotil in one day. At some point, i had butt burn so started using calmoseptine. Unfortunately, i dont recall when it started or worsened. Just started (1.5 treatments) folfox again.

I'm thinking the butt burn is worse or maybe my tolerance has decreased. It feels like passing acid stools, and my anus and rectum hurt for about an hour after every bm. Not a problem sometimes, but somedays, a real problem.

Instead of just accepting the pain i decided to give a call into the pain doctor to get his opinion and see if there is something better than calmoseptine.

The reply came back that this could be neuropathic and he thinks a low dose (100mg gabapentin nightly) could help. I have seen so much on this board about hand and foot neuropathy butt never heard of butt neuropathy!!!!

I thought this was all just because of change in ph of stool. I understand we can't fix that, and the oxy and ms contin don't have an effect on this, so is it maybe worth a try? I am going to run it by my oncologist tomorrow, but thought I'd throw it out here too.

Thanks for any insight or opinions.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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mypinkheaven
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Re: Gabapentin for butt burn, thinking its nerve pain

Postby mypinkheaven » Mon Aug 15, 2016 4:07 pm

You may be having some pudendal neuropathy and Gapapentin might just get rid of the "butt burn"! I hope so!
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Gabapentin for butt burn, thinking its nerve pain

Postby BeansMama » Mon Aug 15, 2016 6:03 pm

It is worth a shot I think. Maybe it will help, if not then you haven't really lost anything and can rule out hiney neuropathy.

Best of luck to you, keeping you in my thoughts and prayers.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Gabapentin for butt burn, thinking its nerve pain

Postby Sams wife » Wed Aug 17, 2016 11:25 pm

I was gonna mention B vitamins in the post about cracks on your mouth. I think a b deficancy can cause that too

On this post I was just gonna tell you, gabapintin was the only thing that stopped pain when hubby had a tumor there. Pain pills didn't work. It was obviously hitting a nerve or something.

But with the potty talk ( I think that was you )
Hips hurting. Now mouth & nerve pain down there. It might be worth checking b vitamins. I had a friend, I think she was just having a problem using her legs. It's been more than 5 years ago tho. One day she just fell while taking a kid to school. & couldn't get back up. They said it was B deficancy and it affects nerves quite a bit. Gabapintin was good for hubby tho. I hope you get something figured out.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Gabapentin for butt burn, thinking its nerve pain

Postby Pita » Thu Aug 18, 2016 2:27 pm

Hope you get this figured out Beans and find some relief. Prayers and hugs to you...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Gabapentin for butt burn, thinking its nerve pain

Postby midlifemom » Sat Aug 27, 2016 10:21 am

Jjust a quick update for anyone who might be having the same situatuon.
The first day, the gabapentin didnt seem to do much, butt it has helped somewhat this past week or so.
Worth a try for those trying to find relief.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Gabapentin for butt burn, thinking its nerve pain

Postby BeansMama » Sat Aug 27, 2016 10:23 am

midlifemom wrote:Jjust a quick update for anyone who might be having the same situatuon.
The first day, the gabapentin didnt seem to do much, butt it has helped somewhat this past week or so.
Worth a try for those trying to find relief.


Glad it seems to be helping you at least get some relief. Hopefully it continues.

Keeping you in my prayers.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Tim UK
Posts: 73
Joined: Fri Jun 12, 2015 1:05 am

Re: Gabapentin for butt burn, thinking its nerve pain

Postby Tim UK » Sat Aug 27, 2016 4:57 pm

Hi
I was on pregabalin (similar formulation) for a couple of weeks for bad neuropathic pelvic pain after my hipec operation. It was incredibly effective. The thing to watch out for is coming off. I'd strongly recommend a gradual dose reduction. I didn't do that (went cold turkey) and had night sweats, crawly skin, bad dreams etc for a while after.
Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy - robot
05/15 Dx st 3 T4N2M0 @43
kids: 11,7
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: 1/16 16;650 | 2/16 3;690 | 3/16 1;36 | 4/16 2;46 | 5/16 1;29 | 6/16 1;42 | 7/16 2;44 | 8/16 3;72 and 4;135
8/16 progression
10/16 Trial: NCT02650713
6/18 progression, back to chemo

arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

Re: Gabapentin for butt burn, thinking its nerve pain

Postby arizona mom » Sat Aug 27, 2016 8:32 pm

I have the same pain. It is currently my biggest complaint about chemo. Every BM is so painful. When it is at all convenient, I often go straight to a sitz bath for relief. I use calmoseptine, tucks, prep H, etc. It doesn't seem like nueropathy, because I am swollen (like hemorrhoids) and raw with occasional bleeding. I just started on lomotil to see it reducing bowel movements will help. Today I even tried acupuncture for the first time specifically for this issue. I start chem #4 of folfox (this time around) on Tuesday. I was hoping to have some relief before starting all over again. I'm following to see if you get relief from Gabapentin.
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Gabapentin for butt burn, thinking its nerve pain

Postby midlifemom » Sat Aug 27, 2016 8:41 pm

arizona mom wrote:I have the same pain. It is currently my biggest complaint about chemo. Every BM is so painful. When it is at all convenient, I often go straight to a sitz bath for relief. I use calmoseptine, tucks, prep H, etc. It doesn't seem like nueropathy, because I am swollen (like hemorrhoids) and raw with occasional bleeding. I just started on lomotil to see it reducing bowel movements will help. Today I even tried acupuncture for the first time specifically for this issue. I start chem #4 of folfox (this time around) on Tuesday. I was hoping to have some relief before starting all over again. I'm following to see if you get relief from Gabapentin.


Talk to your doc, it might help. I started super low dose, 100mg/day.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Gabapentin for butt burn, thinking its nerve pain

Postby midlifemom » Wed Sep 07, 2016 2:59 pm

arizona mom wrote:I have the same pain. It is currently my biggest complaint about chemo. Every BM is so painful. When it is at all convenient, I often go straight to a sitz bath for relief. I use calmoseptine, tucks, prep H, etc. It doesn't seem like nueropathy, because I am swollen (like hemorrhoids) and raw with occasional bleeding. I just started on lomotil to see it reducing bowel movements will help. Today I even tried acupuncture for the first time specifically for this issue. I start chem #4 of folfox (this time around) on Tuesday. I was hoping to have some relief before starting all over again. I'm following to see if you get relief from Gabapentin.


For those following, yes the gabapentin helps. I've been experiencing two types of pain during bms. One is the burn, like the stool is too acidic. The second, and worse, is the knives in pelvic area with intense low back pain and tailbone pain.

I started gabapentin - 100mg - at night, cause it can cause fatigue. The pain was reduced, but evenings were still hard. The pain doc now has me taking 100mg in morning and night. The nighttime pain is gone!!!:) this is big relief since thats when i cluster. The burning pain is slightly reduced, wish that was better. But the knives, muscle and tailbone pain is GONE!!

I hope everyone can find some pain relief today, in whatever form it may be.
Last edited by midlifemom on Wed Sep 07, 2016 3:30 pm, edited 1 time in total.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Gabapentin for butt burn, thinking its nerve pain

Postby mypinkheaven » Wed Sep 07, 2016 3:03 pm

Glad to hear that Gabapentin helps!! :lol:
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

VeroMom
Posts: 5
Joined: Sun Feb 10, 2019 11:16 pm

Re: Gabapentin for butt burn, thinking its nerve pain

Postby VeroMom » Thu Mar 14, 2019 10:27 pm

I completely sympathize with you as I am dealing with similar pain from anal nerves I believe. So sorry for your pain. I am trying Lyrica but not been helpful so far. I tried gabapentin and did nothing for me. I’m glad it helped you!

Jannine
Posts: 118
Joined: Wed Jun 20, 2018 7:46 am

Re: Gabapentin for butt burn, thinking its nerve pain

Postby Jannine » Sat Mar 16, 2019 8:51 am

Just wanted to chime in here that I developed what I can only describe as genital-area numbness while on Folfox that I assumed was because of continuing weight loss. It started well before the neuropathy in my feet, and didn't have the tingling weirdness of neuropathy. I only noticed it when I was cleaning up. It started improving before the neuropathy in my extremities started improving, too. So I don't think it's quite the same thing and obviously it's not the same as what you're experiencing. But just wanted to add that I had odd nerve stuff happening in those areas as well. (And it didn't seem a big deal because the pleasure plumbing was somehow unaffected.)
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8


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