A touch of neuropathy

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Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

A touch of neuropathy

Postby Jannine » Thu Nov 01, 2018 3:18 pm

I've gone back and read through a lot of the recent threads on neuropathy, but I have a question.

It seems like I may be starting to develop some mild neuropathy; for the past 24 hours or so the soles of my feet have kinda felt like the tail end of sensation after you hit your funny bone. A little numb, combined with a little tingly. We're having warm weather here today so I can't chalk it up to cold weather.

My fingers are feeling a little bit numbish too, but no tingling there yet, thankfully.

I've already sent a note to my oncologist to give her a heads up, and I have 8 days 'til my next infusion, so we'll see how things go over the next week.

Also relevant, my oxali and 5FU doses were both cut back by 25% for my last round of chemo because of low platelets and will stay at that level for the rest of my treatments (at most). So I'm hoping that will help slow down the progression of neuropathy symptoms.

I type a lot at work and I knit and weave (which requires manual dexterity for threading the loom) as hobbies. I really don't want for the neuropathy to get bad in my hands, although I'm willing to have some trade-off if there's discomfort in my feet that doesn't otherwise affect my ability to function.

I know people take l-glutamine and other things in the hopes they will help with nerve damage, and I know there are really helpful salves that can be compounded for those with painful neuropathy. I also saw a recommendation for a Homedics style foot massager. How about the rolling-ball foot massagers like I see in my local running store? Would that potentially help any?

It sounds like keeping on top of things is key, and I have no idea what to expect as far as "how bad should this be" before Oxaliplatin should be cut back or eliminated. What are your experiences and recommendations? Obviously I will talk about this with my oncologist, but I'd love to hear thoughts from you all.
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 also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: A touch of neuropathy

Postby Caat55 » Thu Nov 01, 2018 7:25 pm

My hands were messed up during chemo and after for a bit. II am a occupational therapist so my hands are literally critical to my ability to do my job. I am happy to say it is only a minor issue for me. My feet are still funny, tingly and sometime painful but not limiting me. I avoided folic acid enriched foods, flour, cereal, pasta, bread, etc. Check out the threads about it in past. My nurse educator gave me a heads up and I read more here.
It feels a little like I got old overnight, just keep fighting back!!!
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: A touch of neuropathy

Postby Jannine » Thu Nov 01, 2018 8:07 pm

Thanks to these boards I did cut out pretty much all folic acid at home before the start of chemo (we now have organic unenriched flour, unenriched rice, and unenriched pasta), I don't eat enriched cereals for breakfast, and I am careful about avoiding "unknown" staples that might be enriched when we eat out. I do eat an occasional hamburger with bun or similar for lunch, as long as it's not close to my infusion dates in either direction. When I do eat something suspect, I'm careful that I don't eat anything else that might be enriched that day. I even avoid fried chicken because I have no idea what's in the breading.

It's not perfect I'm sure, but I'm super glad to have gotten that advice from the awesome peeps on this forum! Hopefully my dietary changes have helped.

I know I've read that it may not be good not to eat too much sugar too. I've mostly tried to confine myself to baking things that are only a little sweet (and don't have a sweet icing or topping) but when I feel like making something I figure it's probably better for me to be up and active and baking something from scratch, rather than sitting around because the cakes I would bake have sugar.

Getting active is another thing I'm working on... walked 2 miles today, yay! But that's not going to help with the neuropathy, I expect, and that's my bigger concern/source of unease right now.

Caat55, do you remember when your neuropathy kicked in and how many more Oxi doses you had after that, and at what strength? I'm very curious about others' specifics, just as a point of reference.
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 also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

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

Re: A touch of neuropathy

Postby AppleTree » Thu Nov 01, 2018 9:46 pm

I too am a knitter. During Folfox I had to give up socks. But I slowly kept doing it on bigger needles. I made a ton of dish cloths and some scarfs. I credit my "finger gymnastics" as to why my neuropathy did not get severe in my hands.

I walked the dogs every day. When I could not feel my feet. I would start stomping a bit for every step. Now my feet often feel like I am walking on wet sand. The bottoms can be tingly.

I did 12 rounds of Folfox. Maybe one of those squeeze y balls would also help. Definitely tell your Onc. My neuropathy kept getting worse and worse the next 2 weeks after therapy. I was starting to get worried, but after awhile it settled back down.
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!

crikklekay
Posts: 65
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: A touch of neuropathy

Postby crikklekay » Fri Nov 02, 2018 11:44 am

As everyone else said, definitely tell your Oncologist. My DH started feeling the numbness and tingles in his fingers and soles of his feet so she delayed his treatment by one week to give his body more time to recover. When he came back with no improvement she removed it altogether. I know taking B vitamins helps but she didn't want him to start that until after chemo because it was so important for her to know how the neuropathy was progressing and the vitamins might have masked how bad it was. She also said to make sure he doesn't do anything to irritate it, so to be careful about his feet.
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
08/18 CT Scan Clear, NEMD

NHMike
Posts: 1792
Joined: Fri Jul 21, 2017 3:43 am

Re: A touch of neuropathy

Postby NHMike » Fri Nov 02, 2018 9:47 pm

I have some mild numbness and tinglies in the toes and numbness in the soles but it hasn't bothered me functionally. I'm returning to a moderate amount of activity, including running, and it hasn't slowed me down.

There is a tiny amount of numbness in my fingers. I have to think about it to notice it. I type a lot for work and do plan to return to playing tennis where the fingers are quite important. Things got worse for me after the end of chemo.
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

thubler
Posts: 50
Joined: Tue Sep 27, 2016 9:22 am

Re: A touch of neuropathy

Postby thubler » Sat Nov 03, 2018 12:51 pm

Hello. I thought I was going to be lucky with no neuropathy but shortly after my 11th treatment I started to feel it in my hands. After I completed chemo it got worse in my hands. I probably lost 25% of the feeling in my fingers but it slowly came back. I almost have all of the feeling back in my fingers, I usually dont notice it unless I actually think about it.... ow my feet are a different story. I didn’t notice any neuropathy until about a month after treatment. I also started running long distances at that time. I probably lost 40% of the feeling in my feet and it hasn’t returned. Luckily it doesn’t effect me too much. I can still run and do all the things I did before treatment just sometimes my feet are sore and stiff when I first get up until I walk around for a bit. Neuropathy is manageable....hopefully it passes for you.
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18
Deported 11/03/17

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

Re: A touch of neuropathy

Postby mobrouser » Sun Nov 04, 2018 4:58 pm

I shaved my legs today. The last time I did it was likely just before my surgery because of course I wanted to look well groomed while having 18" of my guts cut out of me.
As soon as I started chemo my platelets tanked, I had regular nosebleeds, and I was on daily blood thinner shots so a nick while shaving seemed too much to deal with.
And the hair stopped growing anyway. But I noticed some this morning. Not the usual dark stubble, but soft, blonde hairs about 1/2" long.

So I shaved my legs, and that's when I realised that the neuropathy was not just in my feet but also most of the way up my legs to my knees. Some days my legs feel like they weigh 100 lbs each, but if I touch or rub them I can't really tell if they feel different because of the numbness in my fingers being such a strong sensation. Anyway, this morning I couldn't feel the razor against my skin which really surprised me.

My neuropathy went from zero to full blown after I think the 10th infusion. I mentioned it to my doctor, but at that point I was so close to being finished I think I would have fought her if she suggested dropping the oxali. It was already down to 75% because of platelet and neutrophil issues. She didn't, and I carried on as usual. I have difficulty changing earrings so I have left the same pair in for months now. One morning I timed myself and it was over 5 minutes to do up the buttons on my blouse. Fortunately it was quite loose and I was able to pull it over my head to take it off. Now all my blouses are left buttoned so I can pull them over my head rather than struggle. On a positive note I can now do my bra up the normal way behind my back which I couldn't do before.

It's my feet that are the worst though. As a result of the numbness my balance is completely shot, so closing my eyes in the shower is a definite no-no. I feel a bit like the Princess and the Pea. If I step on even the tiniest of stones it feels as if I have stepped on 2" diameter rock. And this is with shoes on and with the numbness. I know someone here recommended that I spend more time barefoot but it is hard to do in our climate. I have to be very aware when driving too, as it is hard to tell where my foot is when moving from gas to brake. Sandals that don't strap around my ankle are a definite hazard when driving. Fortunately my clutch foot seems to be able to plant itself on the pedal without an issue.

It's been 3 months now since my last infusion so my anxiety about permanency is increasing slightly, but as thubler said it is manageable.

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

margiej
Posts: 50
Joined: Sat Apr 14, 2018 8:46 am

Re: A touch of neuropathy

Postby margiej » Sun Nov 04, 2018 9:43 pm

My neuropathy peaked at about 3-4 months after my last infusion and then gradually improved. It's isn't gone but it's much more tolerable. Just a little numbness in the tips of my fingers that I almost never think about..I still have all my fine motor skills. At the worst I dropped things, couldn't deal cards well, etc. My feet are still numb.. mostly the balls of the feet and my toes. They aren't painful and I am able to do most everything I could before. At the neuropathy peak, it was tricky to drive.. My foot would keep falling off the gas pedal. My slippers would fall off my feet and I couldn't tell. My sheets felt like someone dumped a bucket of gritty sand in my bed...absolutely maddening. But it got better as the months passed if that is any encouragement.
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: A touch of neuropathy

Postby Jannine » Sun Nov 04, 2018 10:05 pm

Thanks to everybody who has replied so far. This really helps me a lot. I thought neuropathy mostly only got worse for another month or so after stopping Oxaliplatin.

My heart goes out to all of you who are living with this stuff. It sounds really frustrating and difficult to deal with, but of course the tradeoff of ceasing Oxi early for less protection is always the flip side concern. I will talk with my oncologist and see what she thinks.
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 also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: A touch of neuropathy

Postby Caat55 » Sun Nov 04, 2018 11:51 pm

I notice some stiffness in my hands when I do stuff initially but it is way better than on chemo. It is still warm here and I am curious about what cold will do. The crazy hands started about 3rd round of chemo, got worse and I think are better though not back to normal. Dealing cards is my barometer, better but not smooth. My feet are tingling in the shower, on fresh sheets. The worse thing, pedicures. They used to be a treat, not now. Pretty toes but wow, not fun or relaxing anymore.
I believe it will pass, want to believe it gets better.

S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

NHMike
Posts: 1792
Joined: Fri Jul 21, 2017 3:43 am

Re: A touch of neuropathy

Postby NHMike » Mon Nov 05, 2018 6:56 am

Caat55 wrote:I notice some stiffness in my hands when I do stuff initially but it is way better than on chemo. It is still warm here and I am curious about what cold will do. The crazy hands started about 3rd round of chemo, got worse and I think are better though not back to normal. Dealing cards is my barometer, better but not smooth. My feet are tingling in the shower, on fresh sheets. The worse thing, pedicures. They used to be a treat, not now. Pretty toes but wow, not fun or relaxing anymore.
I believe it will pass, want to believe it gets better.

S


We've had several days below freezing and I definitely feel it in the toes which is where I mostly feel it. It's noticeable when I don't have socks on walking on cold tile too. But I have socks on almost all the time. I think that fingers notice the cold but I have gloves, which I've already worn a few times, for that. I also have electric hand-warmers but I haven't used them this season yet. I have a space heater arriving today for my home office which is unheated but will be nice for warming. I am five months out of chemo and have not noticed a decline in neuropathy but it's tolerable for me and doesn't really slow me down.
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


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