Neuropathy improvement: individual experience

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kellywin
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Re: Neuropathy improvement: individual experience

Postby kellywin » Fri May 03, 2019 12:18 pm

I'm coming up on 6 years out from my last Oxi infusion. I'd say it took maybe 9 months to even out and get to the point I'm out now. I only did 5 infusions in the vein that included Oxi and I've definitely got it in my feet. Most everything in my fingers/hands went away fairly quickly and my feet recovered some (I stopped falling all the time). I've been on gabapentin (Neurontin) for a long time, without it, it would be worse. It's been a life saver and after almost 6 years, I just upped my dose. My feet do hurt and feel "fuzzy" all the time, but I do most everything I did before. The only thing that really pisses me off is that I can't wear my beautiful really high platform heels like I used to, too much pain. I do wear heels everyday now, just not the really tall ones (although I may change that as I slipped off one last week and fractured by fricking foot). My balance on both feet is pretty good, on one, not as much. For everyday life, it doesn't really get in the way, it's mostly annoying and frustrating, but you learn to live with it.

I'd say if you're at the 1 year mark whatever is left is probably going to stay. I highly recommend gabapentin, even if it just gets you through this phase. Plus, if you're a woman and you are now post menopause, the one positive side effect of gabapentin is that it helps hot flashes & night sweats - like amazingly!

Post chemo is a strange spot to be in I think. I think everyone expects you to just be ok now, you're not in treatment so you're great now, right? At least for me, I wanted to punch people in the face :twisted: . I looked great, had lost weight, so I must be fine. When inside I had so many feelings that I didn't know what to do with I was struggling with neuropothy, but no one gets it. Sorry for the side commentary - I just got on here again yesterday, been awhile, and posting this just reminded me of being in this spot that so many of you are in now.

Best wishes to everyone.

Kelly
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

Surroundedbylove
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Re: Neuropathy improvement: individual experience

Postby Surroundedbylove » Sat May 04, 2019 3:24 am

I’m 10 years out from treatment and I have permanent neuropathy. It definitely improved over the 18 mo the after oxaliplatin was stopped. My medical team explained that it generally takes 18 months or so to regrow nerves or nerve endings - if they are going to regrow. After that, I worked with my doctors to manage the neuropathy the best we can.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

crikklekay
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Re: Neuropathy improvement: individual experience

Postby crikklekay » Mon May 06, 2019 9:24 am

My husband's last treatment was August last year, and our doctor recommended adding B Complex to his daily meds regimen at home to help with the neuropathy. She warned us that it could take years to see improvement but not to lose hope. I know it seems trivial, but recently his feet have become ticklish again! Before he couldn't really feel much sensation except for the electric jolt or tingling so I feel like it's an improvement.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
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06/19 Colonoscopy Clear

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betsydoglover
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Re: Neuropathy improvement: individual experience

Postby betsydoglover » Mon May 06, 2019 9:32 am

It's not always that bad. I had 6 infusions (the every 3 weeks amount) in my arm. I stopped the week after Thanksgiving and my finger tips, as well as the cold sensitivity, cleared up almost immediately. The tingling in my feet (which was never terrible) ended within a few weeks. However, that winter my feet were freezing - bought my first ever pair of big, wooly LL Bean slippers.

Hope you have the same good fortune.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Kbelo
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Re: Neuropathy improvement: individual experience

Postby Kbelo » Mon May 06, 2019 7:51 pm

I had my last FOLFIRINOX infusion Jan 2nd and definitely noticed and increase in the severity of neuropathy for the following few weeks, including the electric pulses down my legs when I moved my head forward (called l'hermittes sign, I think?). I've noticed the pulses stopped about a month ago (3 months post treatment) and I have very minor tingling remaining in my feet and finger tips. Overall I'm pleased with the improvements. At its worst I was rolling my ankle and tripping due to lack of proper sensation in my feet - now I'm able to do aerobics and dancing without issues.
Stage 3B CC - diagnosed at 40
Bowel resection May 2018
28 nodes removed 1 with cancer traces
FOLFIRINOX started July 2018 for 6 months, finished Jan 2019.
1/19 - CT Scan shows NED
2/19 - CT Scan shows NED
5/19 - CT Scan shows NED
8/19 - CT scan + MRI show NED

Surroundedbylove
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Re: Neuropathy improvement: individual experience

Postby Surroundedbylove » Tue May 14, 2019 6:55 pm

I’m more than 10 years now from my oxaliplatin treatment. I distinguished between the cold sensitivity and the neuropathy - different types of pain really. For neuropathy, I was pretty classic according to my neurologist: 18 months after radiation ended was the peak of my improvement. It apparently takes about 18 months (give or take) for nerve endings to regrow - if they are going to regrow. I did do the electrically enhanced acupuncture to help “jump start” that process. I think that was at about the 6 - 12 month point and wished I’d tried it earlier.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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mobrouser
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Re: Neuropathy improvement: individual experience

Postby mobrouser » Sat Jun 08, 2019 9:34 pm

Hi Janine,
I have posted about my neuropathy issues before but to summarize my feet are the worst. In December 2018 I stopped driving my car because I couldn't feel the clutch pedal while driving. It was devastating. the pulsing sensations in my legs and the numbness in my feet have recently been lest severe and for the first time months I have driven my car to work this week.

I am able to put my earrings in without difficulty too. I haven't tried buttons because I leave all my shirts buttoned and just pull them over my head.

I am now 10 months since finishing chemo. The tingling in my finger tips is still there, the wet sand feeling or crumpled socks feeling in my feet is still there but I think it will always be there. I think it is now up to me to make the adjustments

All in all I'm happy to be here.
Cheers, mob
:D
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

Pyro
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Re: Neuropathy improvement: individual experience

Postby Pyro » Sun Jun 09, 2019 5:42 am

mobrouser wrote:Hi Janine,
I have posted about my neuropathy issues before but to summarize my feet are the worst. In December 2018 I stopped driving my car because I couldn't feel the clutch pedal while driving. It was devastating. the pulsing sensations in my legs and the numbness in my feet have recently been lest severe and for the first time months I have driven my car to work this week.

I am able to put my earrings in without difficulty too. I haven't tried buttons because I leave all my shirts buttoned and just pull them over my head.

I am now 10 months since finishing chemo. The tingling in my finger tips is still there, the wet sand feeling or crumpled socks feeling in my feet is still there but I think it will always be there. I think it is now up to me to make the adjustments

All in all I'm happy to be here.
Cheers, mob
:D


That sucks! My nuerothpathy took just over a year to get rid of, after 12 rounds of OX. I tried to claim it at the VA (my diagnosis is tied to military service) and got ignored, maybe I didn’t have it as bad as others.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Jannine
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Re: Neuropathy improvement: individual experience

Postby Jannine » Sun Jun 09, 2019 8:19 am

I'm so glad you're driving again, Mob! That is great news. I hope you continue to have many more months of improvement.

My last oxaliplatin infusion was about 6 months ago now. My hands have improved significantly; the fingertips are still tingly when I touch things, but I think I have most of my feeling back in my hands. My feet still have that electric-vibration sensation, and the tingly electric feeling goes up to my knees and is pretty much constant. It is annoying rather than painful for me, fortunately, and I do have some ability to feel touch even in my toes, at least. I'm just glad it doesn't keep me awake at night.

I have continued to have swelling in my toes and the tops of my feet by the end of the day each day, but now that I'm back on antibiotics for my c diff infection I've started having swelling up to my ankles again. So I'm back to wearing compression socks for a bit, sigh. The swelling doesn't seem to affect my neuropathy, fortunately; it's just frustrating.
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
7/19 CT scan clear

Jannine
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Re: Neuropathy improvement: individual experience

Postby Jannine » Fri Aug 02, 2019 7:56 am

Update on my neuropathy: it's almost entirely gone from my fingers, after improving noticeably over the past few weeks.

My feet are still quite tingly and weird, but are significantly less numb than they used to be. The soles of my feet still feel like I'm walking on a bed of electricity, but I also can feel some sensation in addition to the jangly tingling. I think my upper calves sense normally at this point, and my lower calves and ankles are only partially numb. I can also partly feel it when I touch my feet and toes, now.

I'm about 8 months out from my last Oxaliplatin dose.
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
7/19 CT scan clear

NHMike
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Re: Neuropathy improvement: individual experience

Postby NHMike » Fri Aug 02, 2019 8:15 am

Jannine wrote:Update on my neuropathy: it's almost entirely gone from my fingers, after improving noticeably over the past few weeks.

My feet are still quite tingly and weird, but are significantly less numb than they used to be. The soles of my feet still feel like I'm walking on a bed of electricity, but I also can feel some sensation in addition to the jangly tingling. I think my upper calves sense normally at this point, and my lower calves and ankles are only partially numb. I can also partly feel it when I touch my feet and toes, now.

I'm about 8 months out from my last Oxaliplatin dose.


Glad to hear about the improvement.
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
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7/18: Reversal, Port Removal
2/19: Clean CT


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