Peripheral neuropathy post chemo

Please feel free to read, share your thoughts, your stories and connect with others!
strategygirl
Posts: 4
Joined: Fri Sep 07, 2018 2:06 pm

Peripheral neuropathy post chemo

Postby strategygirl » Fri Sep 07, 2018 2:13 pm

Within a few weeks of completing my second round of chemo, I developed peripheral neuropathy post-Oxaliplatin infusion. I'm now in month three of numb and tingling feet to the ankles and thumb and first two fingers on both hands. My neurologist says it will take anywhere from six to eighteen months to completely dissipate. I'm lucky in that it's sensory nerves only so I'm still able to work, wear heels, drive, etc. and am going to my first reflexology appointment in the morning. Has anyone had similar issues post-chemo? If so, what did you do to alleviate some of the symptoms?


7/17 – annual check-up; asymptomatic; PCP recommendation for colonoscopy; dx stage 3 rectal/colon cancer; CBC; CT – chest, abdomen, pelvis w/contrast; MRI pelvis w/contrast; 07/21 – Xeloda- daily x 6 weeks; 07/25 – Radiation daily x 6 weeks
11/17 – Surgery including permanent colostomy, with muscle/myocutaneous/fascioucutaneous flap of trunk and implantation of mesh for ventral hernia repair.
12/17 – Port installed
01/18 – 05/18 - Infusion with Oxaliplatin (Eloxatin); port removed
06/18 – Neuropathy begins / progresses from thumb and balls of feet to hands and feet to ankles
Last edited by strategygirl on Wed Sep 19, 2018 1:54 pm, edited 1 time in total.

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Peripheral neuropathy post chemo

Postby O Stoma Mia » Fri Sep 07, 2018 3:15 pm

strategygirl wrote:Within a few weeks of completing my second round of chemo, I developed peripheral neuropathy post-Oxaliplatin infusion. I'm now in month three of numb and tingling feet to the ankles and thumb and first two fingers on both hands. My neurologist says it will take anywhere from six to eighteen months to completely dissipate. I'm lucky in that it's sensory nerves only so I'm still able to work, wear heels, drive, etc. and am going to my first reflexology appointment in the morning. Has anyone had similar issues post-chemo? If so, what did you do to alleviate some of the symptoms?

Welcome to the Forum, and sorry to hear that you are having problems with peripheral neuropathy.

First, I have a couple of questions: In what context are you taking Oxaliplatin -- FOLFOX, or XELOX(CAPEOX) ?

Second, it would help if you could create a Signature to show the basics of your DX and treatment regimen. This is so that persons who read your post can determine whether or not they have anything relevant to say. (Peripheral neuropathy under FOLFOX is not exactly the same thing as peripheral neuropathy under CAPEOX, and this is because of the timing and dosage levels of the successive oxaliplatin infusions in the different regimens.)

A link for creating your signature is given below. I think it would help if you were to create a signature. It doesn't take long to set up a signature, then you will have a short summary of your situation that will be displayed at the bottom of all your future posts. (You can always go back later to update it in case the need arises.)

Here's the link to do that:
http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

And here are some tips
Signature tips

Hope to hear from you soon.

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Peripheral neuropathy post chemo

Postby Capri » Sat Sep 08, 2018 10:53 am

My son completed 12 cycles of FOLFOX on July 30. After about the 9th cycle, peripheral neuropathy started first in his fingertips, now in the hands and feet. Oncologist gave him the option of stopping chemo but he wanted the full treatment. He (and I) are hoping it will eventually go away; oncologist says it may be permanent. It doesn't interfere but my son says he is careful stepping on the brake or going up ladders as it's a little hard to feel.

Anyone tried accupuncture for relief?
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

Koreysue
Posts: 24
Joined: Mon Apr 30, 2018 2:36 pm

Re: Peripheral neuropathy post chemo

Postby Koreysue » Sat Sep 08, 2018 11:25 am

I had a few acupuncture sessionsafter I finished chemo. Seemed to help me. I felt like my feet were “waking up”. I still have numbness at the tips of my toes but it was the entire bottom of both feet. My fingers have gotten almost totally better too
I had 9 of 12 with oxaliplatin
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)

User avatar
mobrouser
Posts: 95
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Peripheral neuropathy post chemo

Postby mobrouser » Sat Sep 08, 2018 12:05 pm

I start each day with a large dose of "grin and bear it" and try to make sure that I am getting enough B12 in my diet or, if necessary, with supplements.

I looked at the suggested prescription meds that mask symptoms but they all come with their own side effects and contraindications so they were eliminated from consideration.
The recommendations of PT, acupuncture and other therapies all came with the caveat "may help relieve symptoms in some patients over time". To be honest, due to financial and time issues I wasn't willing to make the leap of faith that I was one of those who would benefit.

I have difficulty with buttons, doing up my bra, putting in earrings, and using a keyboard among other things. For years I have had the hand syndrome that goes with neuropathy (can't remember the name but my fingers go white and numb when cold). Whenever I wriggle my toes it feels as if they are covered in wet sand and I have a strange pulsing sensation in my feet (it feels sort of like when an elevator stops and then makes the adjustment to be level with the floor before the doors open) that occur at random moments. Standing for a long time is painful and walking barefoot is extremely uncomfortable. My balance is out of whack too. All of this came on full blast during the 10th infusion. I went from zero to warp drive in one infusion.

Now to balance what I hope didn't sound too negative, I am still working full time and, while I do spend many hours on a computer, I don't have to do any thing with fine motor skills. As in I am not a surgeon. :P
My travel time to and from work is an hour each way in heavy traffic and I am still driving my manual transmission car (fondly called The Blue Tank). I used to be comfortable driving with sandals but now wear shoes. I would be devasted if I had to switch to an automatic because of the neuropathy.

It was my choice to maintain the oxaliplatin for all 12 infusions (I was at 75% of my initial dosage) and I don't regret it.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic 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

NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

Re: Peripheral neuropathy post chemo

Postby NHMike » Sat Sep 08, 2018 1:31 pm

The neuropathy kicked in around cycle 4 of 8 of CAPOX for me but it went away in the recovery period. So I had some confidence it wouldn't be permanent. Until it stopped going away later. One month after finishing it got stronger. The tingles are in my toes and there's a little loss of feeling in my fingertips. Basically things that I can live with. I'm hoping that they go away over the long haul but can live with it if it's permanent. BTW, my friend with MS has this in a bunch of different areas of her body. She definitely has it tougher.
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; 9/8: 1.8; 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
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

Gravelyguy
Posts: 59
Joined: Thu Jul 05, 2018 6:03 pm

Re: Peripheral neuropathy post chemo

Postby Gravelyguy » Sat Sep 08, 2018 4:56 pm

Mine kicked in after round 10. Round 12 we dropped the Oxi to 80% otherwise full dosage for the first 11 rounds. My oncologist said it would be a very gradual decrease in symptoms. I am now down to morning tingling and after a long day of being on my feet they feel like they are falling asleep. I took, all through chemo and continue to take, a supplement from Plexus that is supposed to help heal nerves. I can’t say for sure that it has helped but it sure seemed to help me through the chemo stage.*

Dave

*Full disclosure, my wife sells Plexus products so mods if this is off base please delete. I am not trying to solicit sales just sharing what I think has helped.
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

Re: Peripheral neuropathy post chemo

Postby NHMike » Sat Sep 08, 2018 6:18 pm

Gravelyguy wrote:Mine kicked in after round 10. Round 12 we dropped the Oxi to 80% otherwise full dosage for the first 11 rounds. My oncologist said it would be a very gradual decrease in symptoms. I am now down to morning tingling and after a long day of being on my feet they feel like they are falling asleep. I took, all through chemo and continue to take, a supplement from Plexus that is supposed to help heal nerves. I can’t say for sure that it has helped but it sure seemed to help me through the chemo stage.*

Dave

*Full disclosure, my wife sells Plexus products so mods if this is off base please delete. I am not trying to solicit sales just sharing what I think has helped.


Gabapentin?
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; 9/8: 1.8; 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
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

Gravelyguy
Posts: 59
Joined: Thu Jul 05, 2018 6:03 pm

Re: Peripheral neuropathy post chemo

Postby Gravelyguy » Sat Sep 08, 2018 7:55 pm

No it is not a prescription drug. It’s called Nerve. It is all natural. I would have to ask what exactly is in it.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

Soccermom2boys
Posts: 195
Joined: Tue Nov 10, 2015 10:29 pm

Re: Peripheral neuropathy post chemo

Postby Soccermom2boys » Sat Sep 08, 2018 8:34 pm

I would actually recommend you start exposing your feet to more stimuli—this was advice from Miss Molly to someone else a while back and unfortunately when I read her post I was well over a year out from finishing my chemo so the neuropathy was too far gone to ever fully fade away for me. But after reading her post I made more of an effort to have my feet feel “uncomfortable” with walking barefoot here in the house where I could and walking barefoot on sand, and I bought a homemedics foot massager this past winter and try to use it daily. It’s that kind of “hurt” that feels good in a weird way. I still have lingering neuropathy in my feet and I assume at this point I always will, but at least on a bad day it is only a “2” on the pain scale (actually only bothers me at night in bed when I lay down and stretch out my legs/feet or when first putting on socks and sneakers to run). I obviously can’t say for sure now, but I think had I started using that foot massager by six months after finishing chemo when my neuropathy was so painful, I could possibly have much less long term issues with uncomfortable feet now. So while it may sound counterintuitive, try to expose those nerve endings to stimuli now so that you can possibly regenerate the proper feelings. Miss Molly is the best, she knows her medical stuff! :D

As for my hands, I have no remaining issues. By about 8-12 months out from my last treatment any neuropathy in my hands was gone.

I did try Gabapentin for about 8 months, but I needed to take two 300mg capsules a day to even help take some of the edge off, truly didn’t do anything more than that for me. And while you can take a considerable amount of it daily to help with the neuropathy, it does not cure it, it only helps with managing the pain AND it made me feel like a zombie. I was falling asleep at my desk at work almost every day by mid-afternoon. Others have had better success with it and I know some try Lyrica. Again, I would highly recommend the route of trying to stimulate the nerves the soonest you can tolerate it, I wish I had known to try that shortly after I finished treatments. I really feel like my feet would be closer to normal had I worked through the uncomfortable pain rather than tried to avoid any pain. Good luck and congrats on finishing chemo!
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

AppleTree
Posts: 244
Joined: Fri Mar 18, 2016 8:16 am

Re: Peripheral neuropathy post chemo

Postby AppleTree » Mon Sep 10, 2018 12:23 am

I knit and crochet. My favorite thing to knit is socks...on small needles. During chemo I could not handle the smallness. I switched to much bigger needles and started making scarfs and dishclothes. Ever so slowly compared to how I knit pre-chemo. I really think this finger exercise helped to keep finger neuropathy at bay. I still can not feel the very tips of my fingers (4 months out now)...so no typing fast. But my knitting needles are getting smaller! As for my feet...yes, it feels like there is always sand in my shoes. Weird. And I pretty much only wear sneakers.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], Jannine and 53 guests