Peripheral neuropathy question

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AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Peripheral neuropathy question

Postby AussieAssCancer » Thu Aug 04, 2016 11:25 pm

G'day all,

Just a quick question re neuropathy in the fingers from FOLFOX (principally the Oxaliplatin obviously).

I am scheduled to start my second last round on Monday and but for a reduction in dosage due to weight loss following surgery/ileo, I haven't missed a beat and haven't experienced any neuropathy (other than cold sensation).

A week ago I shelled a kg of prawns for dinner and since then have had neuropathy in my thumbs. It doesn't interfere with dexterity or anything, just constant tingling, particularly when I put pressure on them.

I haven't experienced any neuropathy in my toes/feet (that I'm aware of).

I understand that it can be a delayed onset and also cumulative but am wondering what people's experiences have been in terms of how rapidly it progresses. Given I've managed 10 rounds so far of FOLFOX, I'm loathed to drop the Oxaliplatin, even though I've read studies that it's probably not THAT beneficial after a certain number.

That said, I don't want to 'soldier on' for these last two rounds, only to have it get worse rapidly and become much worse/permanent.

Has anyone been in a similar situation where it's come on quickly and gotten bad in a hurry?

Cheers,

GK
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

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BeansMama
Posts: 959
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Location: North Carolina

Re: Peripheral neuropathy question

Postby BeansMama » Fri Aug 05, 2016 12:33 am

Mine came on relatively slowly, started with a general weakness in my hands. I just finished round 13 with round 14 scheduled for next week. It is now getting worse more rapidly, I have constant numbness and tingling in my hands and feet that started after round 10, issues with my grip - I drop things a lot if I don't consciously remind myself to keep a tight hold on things, my cold sensitivity never goes away etc.

Your results and experiences could be totally different than mine. The reduction in your dose may keep you from having it get worse. I sincerely hope that you don't develop any more numbness or tingling.

Best of luck with your remaining rounds.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Peripheral neuropathy question

Postby AbbyDoo » Fri Aug 05, 2016 2:45 am

My hands started after my second or third infusion. My feet did not get it untell a couple weeks after finishing chemo. I think the reason why was because all during chemo I wore socks or slippers. Now that it's summer I like to go barefoot butt going outside barefoot feels like walking on glass.
Hang in there your mileage may very.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Peripheral neuropathy question

Postby LeonW » Fri Aug 05, 2016 5:06 am

I completed chemo 3 yrs ago, and still some neuro effects: still have slight tingles in fingers and constant hot feeling feet. But it is still improving; was worse three months ago. A bit uncomfortable, sometimes. But nothing to be afraid off. It started around cycle-2 and was really bad at the end.
L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Peripheral neuropathy question

Postby aja1121 » Fri Aug 05, 2016 9:44 am

My husband had no neuropathy at all through 10 cycles of FOLFOX, but a week after he finished, it kicked in. He woke up one day and told me his fingernails felt weird. The neuropathy progressed until it hit his wrists, and then it started in his toes. Palliative care doc recommended he try Lyrica. It has made a huge difference. His hands are pretty much back to normal. He says his feet still feel weird and kind of tingly, and he still hates to walk barefoot, but his feet are no longer super-sensitive and painful. He slowly tapered on to the Lyrica and now takes 150mg twice a day.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Peripheral neuropathy question

Postby WriterGirl1969 » Fri Aug 05, 2016 4:24 pm

I have pre-existing neuropathy and it's in my feet, so I won't speak to that part, but I will say that due to that my oncologist decided not to do Oxa with my Xeloda treatments. When I asked by how much this might lower the effectiveness of treatment, they told me less than 5%. Don't know for sure this number is accurate, but as you noted something about the effectiveness already I wanted to add that for you in case it's helpful.
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Peripheral neuropathy question

Postby Soccermom2boys » Sat Aug 06, 2016 2:03 am

I am living with post-chemo neuropathy hell as I write--ugh! So I did all eight of my FOLFOX treatments with the regular dose of Oxi. I had the cold sensitivity for about a week after each round, but that was always it and it was only in my hands and I could easily shoo it away by warming them back up. So the very last round, I was just ever so slightly feeling the numbness and tingling of neuropathy in my feet. I am now two months post chemo treatments and my feet and hands drive me crazy from the neuropathy. I walk several miles a day which is not to say it doesn't hurt to an extent, but it hurts anyway just sitting around so might as well get my exercise in regardless.

It is a most bizarre feeling that I could never adequately explain except to say it is annoying and most uncomfortable--would give it a level six on the ten point pain scale. Never a sharp shooting pain, but an always present discomfort. Every time I put on my socks and shoes I have to check to make sure my socks aren't all bunched up because that is how it feels to my feet, but they never are, just an annoying constant feeling. I would say it took at least six to eight weeks post chemo for my feet to get that bad. They seem to have plateaued with the level of discomfort, but have not gotten any better either, just in a holding pattern. For now it has stuck to my feet only, have not noticed it creep up to my legs, but perhaps that fun is just around the corner???

The hands were initially not an issue at all post treatments--silly me, I thought perhaps I was getting off easy with not having to deal with any neuropathy in them. Around six to seven weeks post treatments, I started to feel small twinges of numbness in my fingertips (not all of my fingertips, and truly, just at the very tips). Well, several weeks later and two months post treatments, they too are most uncomfortable. Again, no sharp shooting pains, but for sure hurting in their own unique way I could never adequately describe. When I wake up in the morning, I can barely move my fingers--it takes some effort to get my hands going in the mornings, that is probably when they are their most painful. For now anyway, the neuropathy seems to be in about the top third of the fingers--I would love to say that is as far as it will go, but I know better than to think I could be so lucky!

While I have been able to maintain my usual lifestyle, I do so in silent pain/discomfort and have to get help sometimes for the basics like screwing a lid off or on. Touching the bristles on my hairbrush hurts so it is tough to brush my hair back in to a ponytail, but as I am the only female in my house, I just suck it up, won't be getting any help with that one. LOL Not a day goes by where I don't think about it incessantly and try to see if there has been any change for the better, but unfortunately I am only noticing it getting worse in my hands/fingers and no relief with my feet. It can take a toll on you mentally for sure, I have moments where I just want to scream and cry from it. Walking barefoot outside of my house is a huge NO--tried it once walking on grass to the pool and was so agonizing and torturous, won't be doing that ever again until/if the neuropathy actually is gone. I have read enough posts on here to know that I may be stuck with neuropathy, to some degree, for the rest of my life, I just pray if that is the case it is a much less painful version than what I am living with now.

My onc's office said to take vitamin b6 daily immediately after I felt it starting up. So I have taken a 100 mg tablet of it daily for past two months and can't say it's making a difference so far, but I will continue with it for a few more months to see. If by six months I feel no noticeable difference then I will look in to medication for it. I have heard mixed results regarding the efficacy of the various medications to combat neuropathy so who knows.

I wish I could paint a rosier picture for you, but I would be lying if I did. Here's to hoping your neuropathy experience is as mild as is possible given your number of treatments with Oxi!
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

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Peripheral neuropathy question

Postby teri3 » Sat Aug 06, 2016 8:52 am

I did well until my 11th round and it started in my fingers, my oncologist dropped the last round and I got worse for about 3-4 weeks. It involves the bottoms of my feet and palms of my hands. I've been off it for a year and it is starting to get better, hope yours does too.
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Peripheral neuropathy question

Postby aja1121 » Sat Aug 06, 2016 9:58 am

I have heard mixed results regarding the efficacy of the various medications to combat neuropathy so who knows.


Soccermom, I had also heard poor reviews re: meds for neuropathy and expected hubby wouldn't benefit from the Lyrica, but it has made a huge difference for him. Before taking it, I had to help him with small shirt buttons. Now he is able to do anything on his own - including play guitar, which we were afraid might not be possible anymore. So it's not completely hopeless :)
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Peripheral neuropathy question

Postby AussieAssCancer » Sun Aug 07, 2016 1:34 am

Thanks for the all responses guys! Will mention it to the doc tomorrow and see what they say!

Cheers,

GK
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Peripheral neuropathy question

Postby AussieAssCancer » Mon Aug 08, 2016 9:07 am

Just an update. Saw the doc today and raised neuropathy. Did the pin prick test and both thumbs almost down to first joint appear to have damage. Other than making a note of it and telling me not to hold/touch cold things for prolonged periods, said that we'll proceed as is due to the fact that I'm young and otherwise fit as a Malley bull and so they want to 'push' me.

Soooo - I guess it's stay away from the cold for prolonged periods and fingers crossed the neuropathy doesn't kick in weeks after treatment and is permanent.

On a positive, I'm a 1/3rd of the way through my second last chemo round so I can't really complain too much LOL

Cheers,

GK
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Peripheral neuropathy question

Postby Soccermom2boys » Mon Aug 08, 2016 4:14 pm

Hmm, my understanding was that they would dial it down if/when you had neuropathy issues while going through the treatments. Glad to hear you are otherwise strong and healthy. Here's to your almost end to chemo--woo hoo! There is nothing like the feeling on that day, I am happy for you to be so close to the finish line. As for the neuropathy, keep in mind it may take a while (a few weeks) to fully kick in if you don't feel anything right away. Definitely keep us posted when you run your victory lap. :D
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

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Peripheral neuropathy question

Postby Soccermom2boys » Mon Aug 08, 2016 4:23 pm

aja1121 wrote:
Soccermom, I had also heard poor reviews re: meds for neuropathy and expected hubby wouldn't benefit from the Lyrica, but it has made a huge difference for him. Before taking it, I had to help him with small shirt buttons. Now he is able to do anything on his own - including play guitar, which we were afraid might not be possible anymore. So it's not completely hopeless :)

Well, I have a three month follow up at the end of September with my onc's office--will see by then if I want to explore any prescribed medication. I am trying to avoid taking any more than I need to and of course it comes with it's own set of side effects so I will wait it out a bit longer. Thank you Aja for letting me know it's working for your DH, happy that he is able to get relief from the neuropathy and that the medication can be very helpful for those whose nervous system responds to it. So maddening sometimes how unique we each are to our responses to these various drugs/treatments because you never know what point in the spectrum you will be at.
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

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Peripheral neuropathy question

Postby AussieAssCancer » Mon Aug 08, 2016 8:59 pm

Thanks Soccermom.

I thought the same, but my dose was reduced by 15% after my 1st Rd back after surgery cos it knocked me on my ass for a week having previously sailed through my earlier treatments (so very lucky, I know) and because I was so close to the end they said to bat on, at least with this one and if it gets worse in the next fortnight, they'll cut it off for the last one.

The irony is that other feeling tired and having lost a lot of muscle weight, I've never looked healthier. The irony eh??

Am totally excited (and a little scared/anxious) about finishing up, if only so I don't have to wear that bloody pump for two days and listen to it endlessly groan at me!

My wife asked me what I wanted to do the day I was disconnected and I just started crying and said I had no idea. I suspect that we'll have a nice dinner with my parents and a few glasses of red, and maybe a cigar, because hey, I reckon I've earned it LOL.

Thanks for your kind words and support :)

GK
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Peripheral neuropathy question

Postby jhocno197 » Mon Aug 08, 2016 10:53 pm

Have several glasses!!!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17


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