Starting gabapentin

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Aqx99
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Starting gabapentin

Postby Aqx99 » Wed Jan 03, 2018 6:53 pm

I saw my oncologist today. I was describing some issues I have been having with my hands and feet to her PA. I have numbness, pins & needles feeling and pain when touching things. I also have been having a hard time buttoning and tend to drop things. She suggested gabapentin and said she would discuss it with the doctor. They have decided to start me on 300mg/day, taking it at night because it can cause drowsiness. For anybody that has taken or is taking gabapentin, what can I expect? Side effects? How much improvement have you seen?
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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susie0915
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Re: Starting gabapentin

Postby susie0915 » Wed Jan 03, 2018 8:01 pm

I was prescribed but never took it. I know it can make you feel loopy. I've been waiting to see if things would get better. My hands are much better I don't drop things anymore or lose my balance. My is more tingling and uncomfortable barefoot in hard surfaces. Doesn't stop me from doing anything just annoying. Good luck let us know how it works, may be I'll start my scripr . My son took it when he was a kid for seizures at first he was a little hazy but he adjusted
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Starting gabapentin

Postby NHMike » Thu Jan 04, 2018 7:13 am

I just finished my first cycle so this is a concern for me down the road.

I do not like feelings of drowsiness or loss of control. I need to get up twice at night to empty my bag to avoid leakage (that's worst case, I'm usually okay with just one empty but I do it twice to be sure). Something making me very drowsy could result in a big mess to clean up. But I do understand how bad permanent neuropathy can be and it's a huge concern for those on CapeOx. It's been a big discussion area on my radar.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Starting gabapentin

Postby Aqx99 » Thu Jan 04, 2018 10:53 am

I took my first dose last night, along with the trazodone I have been prescribed to help me sleep. I felt a little woozy when my alarm went off at 2am for me to empty, but I was able to do it no problem. Hopefully it will stay that way.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: Starting gabapentin

Postby Soccermom2boys » Thu Jan 04, 2018 11:20 am

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.

Wishing you all the best with your neuropathy, may it be a fleeting memory.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

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susie0915
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Location: Michigan

Re: Starting gabapentin

Postby susie0915 » Thu Jan 04, 2018 11:43 am

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.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

zephyr
Posts: 363
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Re: Starting gabapentin

Postby zephyr » Thu Jan 04, 2018 6:53 pm

I started on 600 mg at night but that was too much so I broke the pills in half and took myself down to 300 mg. That took the edge off the neuropathy: I wasn't dropping things anymore and I was able to sleep without the on-the-edge-of-painful toe chills waking me. There was still neuropathy but it was manageable. Then I got a little ahead of myself and tried to cut back to 150 mg and my feet started acting up again so I went back to 300. It's been over a year since my last infusion of oxal and I might try to cut down again...
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

orlar
Posts: 65
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Location: oregon

Re: Starting gabapentin

Postby orlar » Thu Jan 04, 2018 8:09 pm

I noticed the tingling/numbness around cycle 2, but it would ease off by the before the end of the cycle. By cycle 4 or so it was more persistent and I started gabapentin. Cycle 8 OXI stopped due to infusion reaction and the neuropathy. I finished cycle 12 and have been on gabapentin 300mg since cycle 4. I started with 1 -300mg at night and stayed there pretty much until after cycle 12, due to the disconnect feeling when doing more than that. Recently, I have been taking 2 a day as things have worsened after cycle 12 (on the 7's and get the late morning disconnect feeling around 10-11am). I can still walk without too much pain (2.5 miles a day is about it). I still have the dropsies and buttons can be tough with the hands. From the forum, I knew it was common for the neuropathy to worsen for a while after treatment. I can't say the gabapentin isn't helping as I haven't tried stopping it. Just so you know, my ONC wanted me at 300mg 3 times daily from the beginning, but for me the disconnect feeling is more than I like. I did see my ONC today and he suggested we give Lyrica a try. Trying to get insurance to approve it now. Just keep everyone up to date (infusion RN's, ONC etc.) on how you are feeling as you continue through treatment.
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

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CRguy
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Re: Starting gabapentin

Postby CRguy » Thu Jan 04, 2018 10:09 pm

Just a couple of generic comments here concerning "neuropathic" medications :
( which may include gabapentin, amantadine or pregabalin which are all kind of similar in action ..... BUTT different meds and not the same ! )

1. PLEASE check with your own docs about these drugs in your own individual situation
2. sometimes patients need a "wean on" interval so side effects don't overwhelm you
3. NEED a wean OFF interval = do not stop cold turkey if you have been on them a while = DO NOT !
4. some folks have few to NO side effects ... others have major issues, so if one does not work, another may work
5.UNlike chemo infusion doses ... sometimes IF things are going Ok ... try a dose reduction to the lowest effective dose for YOU
6. LIKE chemo infusion doses ... IF things are NOT going OK, try a lower dose and if still NOT OK ... change ... AFTER a withdrawal interval
7. IF your docs have not given you at least as much info as I just did ................. well you can figure that out for yourself I hope :twisted:

(( I have been prescribing for vet patients for past 20 years and wifey has been on Lyrica for past 10 years
= Yes I know what I am talking 'bout homies !!!! :mrgreen: ))

Cheers and " let's be careful out there wit's dem drugs !!! "
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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susie0915
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Re: Starting gabapentin

Postby susie0915 » Fri Jan 05, 2018 10:00 am

Yes definitely cannot stop cold turkey. My son was on these medications for seizures during his teen years. After being seizure free for 3 years, it took a year to wean him off his meds. My other son had his first seizure at 25, he is on meds due to his brother's history and my sister having seizures. He went out of town for work and missed a few doses of his meds and it triggered a seizure. The meds build up in your system and are kept at a therapeutic range. A sudden drop can trigger seizures, so important to reduce dosage levels slowly.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5


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