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Old 10-21-2014, 10:05 AM   #1
Bellaokc
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Location: Oklahoma
Posts: 51
I'm a zombie...thanks Neurontin aka Gabapentin

A few months ago my left arm, which had been numb since my mastectomy and lymph node removal, started to "wake up." It was hurting all day and I had to wear a compression sleeve, which I hate, to keep it from REALLY hurting. The surgeon who performed the surgery prescribed Neurontin and it worked immediately. However it has also turned me into the walking dead and I am exhausted all of the time. I take 300mg a couple of hours before bed and I start drooling out of the side of my mouth. I wake up feeling fine the next morning for about 2 hours, then I start to crash again. The fatigue gets worse as the day wears on and then I take my nightly pill and begin the cycle all over again.
I started the medication 6 days ago and I have been reading that the body will adjust to the side effects and I will be able to function again, but I am seriously thinking of stopping the medication and putting the compression sleeve back on.
Any thoughts???

Thank you!
__________________
Norma,

June 7, 2013: Age 43, mother of 2, had just celebrated 16th wedding anniversary June 6th
Dx Invasive Ductal Carcinoma:
ER-, PR-, HER2+++,
Stage IIb, 5 cm. tumor, grade 3
Benign lymph nodes.
June 26, 2013: Begin 4 Rounds of AC
Sept 19, 2013: Begin 12 weekly treatments of Taxol/Herceptin
Oct 22, 2013: Skipped a treatment because of a trip to the ER. Turned out to be a blood clot in the inferior vena cava….Started Coumadin (aka Warfarin)
Dec 12, 2013: Last treatment of TH
Dec 20, 2013: CAT scan and nuclear bone scans show NED. Yay! Chemo worked!
Jan 24, 2014: Bilateral mx w/expanders inserted; 10 Lymph Nodes removed on left side;Pathology report shows no trace of tumor was left after the chemo. More proof that the chemo worked!
Jan 30, 2014: Emergency surgery due to hematoma on the right side. Had a filter inserted to deal with blood clot that had developed in October.
Feb 2014: Begin Herceptin only treatments
Aug 29, 2014 Expanders OUT and implants IN
Sept 4, 2014 Last Herceptin treatment YAY!!
Oct 8, 2014 Port Removed
Dec 5, 2014 Nipple Reconstruction

Current Meds: Daily - 150 mg Effexor; 50 mg Tramadol for aches and pains caused by treatments
Occasional - 30mg Temazepam (Restoril) for insomnia ; 300mg Neurontin for nerve pain in left arm; 1 mg Lorazepam (Ativan) for anxiety;
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Old 10-21-2014, 12:08 PM   #2
StephN
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Location: Misty woods of WA State
Posts: 4,128
Re: I'm a zombie...thanks Neurontin aka Gabapentin

Hello Bella -

Maybe you are taking a little too much to begin with.

Yes, Gabapentin WILL do that - increase the fogginess. I had to switch to Lyrica after my back surgery for just that reason. A few weeks on lowered Gabapentin dose, but the cumulative effect was too noticeable. The Lyrica has a rather costly co-pay, but it worked well for me, I needed less of it and I got my brain (such as it is) back.

I was lucky enough to get a surgeon who did not slice right through my main nerve while removing my lymph nodes. He took an extra five minutes to spare it. I did have some numbing, but had feeling at the back of my upper arm after the anesthesia wore off. Too bad this is not something that more women can insist upon, but they are not told how the surgeon will do the cutting, or what he will cut or leave intact.

This level of detail goes beyond what most of us can deal with when facing surgery and all the questions that are bouncing around. But it IS important.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 10-21-2014, 05:40 PM   #3
sassy
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Re: I'm a zombie...thanks Neurontin aka Gabapentin

Hey Bella,

I took Neurontin for several years and did have to work through N adjustment period. As Steph said, perhaps you should lower the dosage. I think mine was 200mg that I actually took four times a day. I can't say I got to the Point of no signs of lethargy, but it did resolve to a tolerable level.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 10-22-2014, 08:38 PM   #4
Bellaokc
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Location: Oklahoma
Posts: 51
Smile Re: I'm a zombie...thanks Neurontin aka Gabapentin

Thank you for your responses ladies :-) I am happy to report that today (day 7) I felt MUCH better. I couldn't believe it! The Neurontin worked on the pain and I was neither foggy-brained nor lethargic.

Steph, I had originally not wanted to have any lymph nodes removed, but the surgeon thought I would regret it later, since my cancer had been growing so aggressively. I didn't realize that nerve damage would result from the surgery.

I have read that people usually have to increase their dosage after a while. So we will see if that is the case with me. After so many months of SOMETHING hurting, brain not working, feeling exhausted, etc...one good day is like a diamond. I am hoping that things are on the upswing now.
__________________
Norma,

June 7, 2013: Age 43, mother of 2, had just celebrated 16th wedding anniversary June 6th
Dx Invasive Ductal Carcinoma:
ER-, PR-, HER2+++,
Stage IIb, 5 cm. tumor, grade 3
Benign lymph nodes.
June 26, 2013: Begin 4 Rounds of AC
Sept 19, 2013: Begin 12 weekly treatments of Taxol/Herceptin
Oct 22, 2013: Skipped a treatment because of a trip to the ER. Turned out to be a blood clot in the inferior vena cava….Started Coumadin (aka Warfarin)
Dec 12, 2013: Last treatment of TH
Dec 20, 2013: CAT scan and nuclear bone scans show NED. Yay! Chemo worked!
Jan 24, 2014: Bilateral mx w/expanders inserted; 10 Lymph Nodes removed on left side;Pathology report shows no trace of tumor was left after the chemo. More proof that the chemo worked!
Jan 30, 2014: Emergency surgery due to hematoma on the right side. Had a filter inserted to deal with blood clot that had developed in October.
Feb 2014: Begin Herceptin only treatments
Aug 29, 2014 Expanders OUT and implants IN
Sept 4, 2014 Last Herceptin treatment YAY!!
Oct 8, 2014 Port Removed
Dec 5, 2014 Nipple Reconstruction

Current Meds: Daily - 150 mg Effexor; 50 mg Tramadol for aches and pains caused by treatments
Occasional - 30mg Temazepam (Restoril) for insomnia ; 300mg Neurontin for nerve pain in left arm; 1 mg Lorazepam (Ativan) for anxiety;
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Old 10-24-2014, 02:49 AM   #5
michka
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Posts: 858
Re: I'm a zombie...thanks Neurontin aka Gabapentin

Hello Bella
I am happy you are feeling better. I had to take Neurontin for a year after surgery for pain, burning and electric shocks in my arm. The surgeons don't speak about this before the operation and they should. After a year I was able to lower the dosage and get rid of Neurontin. I still have problems with my arm but I can manage it without Neurontin.
So my suggestion would be that if you can stabilize the pain you could try to slowly reduce the dosage after a few months. Things improve.
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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