Neuropathy improvement: individual experience

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Jannine
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Location: Maryland, USA

Neuropathy improvement: individual experience

Postby Jannine » Wed May 01, 2019 8:06 am

I've wished there were more anecdotal information out there about neuropathy improvement over time, because it seems like such a mystery to me. If you are experiencing neuropathy improvement, please post here with your details. I think it would be helpful to others who are concerned about this side effect.

It's now been about 5 months since my last Oxaliplatin dose, which had already been cut down to 75% strength. At its worst, about 1 month after my last dose, I had trouble keeping my balance with my eyes closed (especially noticed this in the shower), had trouble buttoning buttons, and had trouble writing without having to focus all my attention on the mechanics of writing. If I straightened my arms completely I had a weird electric sensation that ran the length of my arms and was very uncomfortable, but not painful. Washing my hair in the shower felt completely weird on my hands. I quit using my fingernails for anything I normally do (basic things like getting dirt out from underneath other fingernails) because I couldn't tell how much pressure I was applying, and I was worried I might hurt myself. I had to look at my hands to tell where to put them on the keyboard (I am a touch typist). My feet were mostly numb, and were pretty numb to touch almost up to the knee.

My neuropathy has been improving in fits and starts. I may go 3 or more weeks without improvement, and then suddenly I realize that things are different. Or I might have a week where things seem a bit better every few days.

My trouble with handwriting only lasted a few weeks, and I have no trouble with buttons now. Washing my hair feels nearly normal. My fingertips feel weird but I have enough sensation to do everything I would normally do. All the really awful side effects above have resolved, although my lower legs below the knee and my feet still are pretty numb to touch. I still can't walk barefoot comfortably. But my feet do have a bit more feeling than they did 5 months ago.

I'm a hobbyist weaver and I'm now working on putting a warp on my loom, after worrying that I might not get to weave again. The threads are fine but I think at this point I can probably handle fine threads.

At its worst, I was really worried that I should have stopped the Oxali sooner. (We stopped it when I started having trouble keeping my balance in the shower with my eyes closed.) I wasn't sure that I wanted to have neuropathy that bad for the rest of my life. But at this point I'm pretty sure my hands will keep improving, and I am hopeful that my feet will eventually improve too. Even if it stopped where it is now, I no longer feel that it is having a negative impact on my quality of life.

I have been taking 600mg of Alpha Lipoic Acid daily, and recently started taking 5,000 IU of Vitamin D3. I have no idea if the ALA has helped, obviously.

I'm hoping this offers some useful information to those who have concerns about neuropathy from Oxaliplatin. Things vary a lot, so this is just my experience. If anyone else wants to share their experiences in this thread, please do!
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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Joined: Fri Jul 21, 2017 3:43 am

Re: Neuropathy improvement: individual experience

Postby NHMike » Wed May 01, 2019 10:02 am

I'm 11 months out and I don't think that there's been any change. I feel it in my toes and slightly in my fingertips. I do regular balance exercises and core work to counteract sensitivity issues (or lack of). I'm generally able to function though.
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

Dionca
Posts: 39
Joined: Sat Dec 02, 2017 2:04 am

Re: Neuropathy improvement: individual experience

Postby Dionca » Wed May 01, 2019 11:12 am

I experienced exactly the same symptoms as you mentioned, including the weird "electric" sensation in my arms when outstretched. I think the unexpected (and potentially dangerous one) was the lack of balance in the shower. If I closed my eyes to shampoo my hair, I would be very unsteady and would have to hold on to the shower rack with one hand and wash my hair with the other.

By the six month mark, most of the symptoms had gone away, my hands were back to normal, and I no longer had to go through the balancing act in the shower, and the only remaining problem was my feet (although they were not as bad as had been). I found it helpful to keep a weekly diary, detailing my symptoms, so that I could see improvements gradually happening.

What I didn't realize was that the neuropathy symptoms get worse after you stop chemo - this can be alarming if you are not expecting it. Then they gradually start to taper off over the next few months. In my case, I have permanent neuropathy in my feet and can feel the "tightness" up to my knees. I'm not really in any pain, it's more annoying than anything as I now have to place my feet in my shoes, rather than wriggling them in as I normally did. Walking long distances can be difficult and tiring, but everyday walking is just fine.
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (without oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy

AmyG
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Re: Neuropathy improvement: individual experience

Postby AmyG » Wed May 01, 2019 11:44 am

Did yall have issues with "first bite syndrome" as well?

I got my first folfox/Avastin treatment yesterday (currently wearing my sweet take home ball) and already noticed how jarring it is to eat or drink anything cold. I assume that goes away at some point, but is there any relationship with that side effect and significant neuropathy?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

ab123
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Location: Boston

Re: Neuropathy improvement: individual experience

Postby ab123 » Wed May 01, 2019 1:20 pm

I'm 6.5 years out from treatment and still have some residual neuropathy from the Oxaliplatin, but I don't really think about it anymore. I'd say my feet are different and I can still tell they aren't the way they used to be, but I don't have any numb spots. It's just a little tingly - a different sensation - especially barefoot. I don't really like to go barefoot as much, but it doesn't hurt or anything. It's kind of a very mild pins and needles. But again - I truly don't think about it. I think my balance may be slightly affected when eyes are closed, in the shower for instance, but I have never fallen as a result. I have no impairment or reduction in mobility.

After treatment it continued to get worse for maybe a couple months, and then it steadily got better - pretty much completely resolved within a year to where it is now. I only notice any permanent change in my feet. Cold sensitivity, mouth discomfort, and finger numbness were all acute symptoms that went away pretty quickly. My feet started with feeling like my socks were bunched up or that there was something in my shoe. But I no longer have that sensation.
Aug 2012: RC DX Stage IIIC, T3N2M0 by MRI - 38M
Fall 2012: Chemorad
Nov 2012: LAR - Path report: 0/13 LNs, tumor reduced to "microscopic foci"
Jan-Apr 2013: 8 rounds FOLFOX
May 2013: Ileostomy takedown, port removal
July 2013 (and since): NED!

NHMike
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Re: Neuropathy improvement: individual experience

Postby NHMike » Wed May 01, 2019 1:29 pm

AmyG wrote:Did yall have issues with "first bite syndrome" as well?

I got my first folfox/Avastin treatment yesterday (currently wearing my sweet take home ball) and already noticed how jarring it is to eat or drink anything cold. I assume that goes away at some point, but is there any relationship with that side effect and significant neuropathy?


I had first bite. After a while, you just take that first bite very carefully. It wasn't permanent for me.
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

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ginabeewell
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Re: Neuropathy improvement: individual experience

Postby ginabeewell » Wed May 01, 2019 1:58 pm

AmyG wrote:Did yall have issues with "first bite syndrome" as well?

I got my first folfox/Avastin treatment yesterday (currently wearing my sweet take home ball) and already noticed how jarring it is to eat or drink anything cold. I assume that goes away at some point, but is there any relationship with that side effect and significant neuropathy?


For me, the cold sensitivity would go away in a few days - stretching out a bit more with subsequent doses. So at first it lasted 2 days, then 3, then 4, etc.

Most - but not all - of my neuropathy seemed to resolve by the end of the first week. So by the time I had my next dose of chemo, I wasn't experiencing it any more.

I did do weekly acupuncture and they treated my fingers and feet with a laser treatment which is supposed to help with neuropathy.

I haven't had Oxy since mid-Feb, and I can kind of feel a little numbness on the bottoms of my feet, but that's it. It's not super noticeable or creating any issues for me. Dr Kemeny was hesitant to keep me on FOLFOX, but I have tolerated it well enough - and it's worked for me well enough - that I asked her to consider it. Not sure if her intent is to add it back in at some point or move me to FOLFIRI. (My first chemo post-surgery was FOLFOX hold the Oxy.) Guess I'll find out next Monday!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
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Re: Neuropathy improvement: individual experience

Postby susie0915 » Wed May 01, 2019 2:15 pm

I'm 3 years out from chemo. Still have neuropathy on the bottom of my feet. Tingly and weird feeling especially barefoot. It doesn't prevent me from doing anything but is annoying. I think I have just gotten used to it, since it really doesn't prevent me from doing anything. My hands are okay, I used to drop things but don't anymore.
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

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

Re: Neuropathy improvement: individual experience

Postby Gravelyguy » Wed May 01, 2019 2:40 pm

I had first bite and cold sensitivity which was a lot of fun in MN in the winter. I also had some balance issues but nothing severe. I never had any finger numbness but did get progressively worse foot numbness. It felt like the bottoms of my feet were falling asleep. I didn't notice it until round 10. I am a cross country and track coach so was concerned about long term trouble. I stayed on full dosage for round 11 but reduced to 80% Oxi on round 12. I am just over a year from my last chemo. The only lasting effects are the numbness on the bottom of my feet. It is almost gone but I do feel it particularly at night lying in bed. It does not in any way impact my activity. So feeling pretty blessed!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Claudine
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Location: Montana

Re: Neuropathy improvement: individual experience

Postby Claudine » Wed May 01, 2019 2:42 pm

My husband had his last Oxaliplatin infusion mid-October. Neuropathy continued to get worse for a few months, then gradually got a little better for his hands (he noticed the neuropathy gradually "shrinking" from two digits to one digit to one-half of a digit...). No real improvement in his feet, unfortunately; he's never felt out of balance, but they're painful, making it difficult to walk for any length of time. I massage them every night with CBD cream and that helps, at least temporarily.
We were told it could take a year, or more, for things to improve. Unfortunately, since his Oxaliplatin treatment did not work, he's now on Folfiri + Avastin. Not supposed to exacerbate neuropathy, but it does its own damage to fingers and toes...
Has anyone used a Shaitsu foot massager and noticed improvement?
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Soccermom2boys
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Re: Neuropathy improvement: individual experience

Postby Soccermom2boys » Wed May 01, 2019 8:09 pm

Claudine wrote:Has anyone used a Shaitsu foot massager and noticed improvement?


I have a Homedics foot massager that I use regularly. Unfortunately I did not think to purchase it soon enough to make drastic improvements with my feet, but I do recommend it. Your husband finished his treatments only about six months ago so he is still in that stage where he could have progress with the neuropathy diminishing so I would strongly recommend the ~$90 investment (coupons, sales via Kohl’s or Costco, etc.). I took the approach to avoid any stimulation to my feet when the neuropathy came on strong within a month of finishing my eight rounds of Folfox and wish now I had forced it a little more so that maybe it would have had a better long term outcome. I am like several others above who definitely don’t have a normal feeling in their feet, but it also doesn’t keep me from walking and running and no balance issues, but damn it is annoying when I go to bed at night and I just feel the “oddness” of it or about not being able to easily slip on certain types of shoes, etc. However, given that I am three years out of treatment with no evidence of disease, I can live with it!

I bought the foot massager when I was a year and a half out of treatment so by that point the damage was done/permanent, but if I could go back in time I would have bought one from the get go and given my feet the extra stimulation to help reset the nerves so to speak.

Best of luck to everyone dealing with their own version of neuropathy—it truly is a “unique” beast for each of us.
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

Jannine
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Location: Maryland, USA

Re: Neuropathy improvement: individual experience

Postby Jannine » Wed May 01, 2019 8:28 pm

I had first bite symptoms pretty bad at first, but that pretty much faded away after 8 treatments or so.

With the cold sensitivity I found it very useful to run my hands under warm water for a good 30 seconds to warm them back up thoroughly. If your hands feel tingly again before you even get them dried off, they aren't warm enough yet; go back to the sink!

For me the cold sensitivity lasted a little over a week. I could eat ice cream for a few days before each infusion. But right after getting an infusion I couldn't even drink water straight out of the tap; even that was too cold. I had to warm water up in the microwave.
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

Claudine
Posts: 183
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Location: Montana

Re: Neuropathy improvement: individual experience

Postby Claudine » Thu May 02, 2019 9:46 am

Thanks Soccermom2boys, that's great advice, I'll look into getting him a foot massager.

Claudine
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Dionca
Posts: 39
Joined: Sat Dec 02, 2017 2:04 am

Re: Neuropathy improvement: individual experience

Postby Dionca » Thu May 02, 2019 2:54 pm

Don't place too much hope in a foot massager (that's the same as a TENS machine right?). I used one religiously starting midway through chemo, and for months after, hoping to ward off neuropathy, but it didn't do a thing for me.

In fact, a cheap wooden foot roller helped me more (albeit temporarily) as it seemed to warm up my feet a bit. We all seem to experience neuropathy differently - some have burning hot feet, but mine were icy cold. I still have to wear socks, even to bed, but my feet are nowhere near as bad as they were - they felt like 2 blocks of ice attached to my legs 
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (without oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: Neuropathy improvement: individual experience

Postby juliej » Thu May 02, 2019 6:45 pm

Soccermom2boys wrote:I am like several others above who definitely don’t have a normal feeling in their feet, but it also doesn’t keep me from walking and running and no balance issues, but damn it is annoying when I go to bed at night and I just feel the “oddness” of it...

Agree! I am several years out and while the neuropathy has disappeared in the ball of my foot, it's still present in my toes. Since I'm a rock climber and use my little guys for adhering to granite walls, this is a serious issue for me!

Since they just feel odd and not "cold" I have to touch them to realize they are actually freezing and put some socks on. That seems to increase the feeling in them, so this winter I tried sheepskin slippers around the house to keep them warm.

HFS (hand and food syndrome) from years of Xeloda also caused me to lose 4 toenails. One is valiantly trying to grow back (go, dude, go!), but the other three toes look like like tiny bald guys! :D

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1


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