Fingertip and toe numbness from Cape or Oxaly?

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lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Fingertip and toe numbness from Cape or Oxaly?

Postby lakeswim » Mon Dec 10, 2018 4:50 pm

Hello.
Curious about others experience with numbness in fingertips and toes - particularly if you have done TNT.

I went through FOLFOX chemo over the summer. I stopped Oxaly after Round 5 of 8 due to reaction of severe hand and leg cramping (which was not an issue when I wasn't on the drug). During my break in September between chemo and chemo/radiation, I had some neuropathy in lower left leg and top of my foot but it went away completely. A week into starting chemo/rad (with capecitabine - the generic of XELODA), I started feeling numbness in the very tips of my fingers and my toes, so I assumed this was from the Cape. (I also had the inflammation/redness/burning issue - which came on later - but that went away after I stopped Cape.)

My numbness *seems* to be triggered by friction, movement, and heat. Cold actually seems to help and I have had no problem standing out in the cold for an hour (even getting my sneakers soaked in slush puddles) while out with my dog or walking barefooted on the frigid concrete floor of my garage (feels nice, actually!).

I asked my Onc team if this info indicates that my numbness is more Cape related than Oxaly related (thinking that if it were the Cape, then it WILL go away vs. it being from Oxaly, which may or may not go away). The reply I received was that neuropathy is a funny thing and it can come and go, get better and then get worse, and only time will tell if it will ever go away. They said I can't assume anything about what it's from. (That said, my Onc MD did assure me when I went on the Cape that any skin affects/changes from the Cape - including numbness - goes away within weeks of treatment being over.) It's been nearly 4 weeks since I stopped the Cape and it does seem to get worse at times, so I'm thinking at this point that it's probably the Oxaly.

Also, I did not get any skin peeling issues or anything while on Cape (though I was religious about the urea cream) but now that I'm done, my skin on my fingers seems worse than usual (given it's cold and dry where I live).

I realize that time will tell but just curious if anyone who did TNT has any experience to share regarding the finger tip and toe numbness. ALSO - my apple products only recognize my finger like half the time! Thanks!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Fingertip and toe numbness from Cape or Oxaly?

Postby juliej » Mon Dec 10, 2018 5:43 pm

Oxaliplatin is the 800-pound gorilla when it comes to neuropathy. Capecitabin is also a factor and I often wonder if those of us who've taken both at the same time have increased detrimental effects.

I had the classic HFS (hand-foot syndrome) with Cape -- red, peeling, and hot hands and feet. Although my skin healed after treatment ended, I lost 3 toenails that never grew back. :cry: I was also one of the people who lose their fingerprints on Cape. They are slowly coming back now. I managed to use the fingerprint recognition on my iPad just this year so hang in there about that! :D

Oxaly caused classic neuropathy in both my hands and feet during treatment and I also had numbness in my throat during the infusion (which was a bit scary!). It was hard to button up my clothes and I dropped heavy things (like a glass of water) on a regular basis because I couldn't tell if my grip was strong enough to hold them. The problem is that your nerve cells’ long extensions (called axons), degenerate over the course of oxaliplatin treatment. This progression continues for a time after treatment is stopped/ended. In clinical studies, even 6 months later, 7 out of 8 patient's axons continued to wither. That means the numbness will get worse before it starts getting better.

The neuropathy in my hands went away 100% about 18 months after treatment, but my finger tips still get numb very easily in the cold. It also went away in the soles of my feet but my toes continue to be pretty numb. I have to keep an eye on them when I hike in the snow because I'm not sure I can feel if they're getting frostbitten.

Right now I view those problems as a small price to pay for being alive, but I wish there were more studies on the long-term effects of oxal and cape-induced neuropathy. B6, Gluatamine, and other supplements have been suggested to help things, but nothing seems like a sure bet. I agree with your onc about it coming and going.

What I'd like to see is an evaluative analysis of numbness, pain, etc. post treatment, and then subsequent annual tests to see if there is any improvement (also tracking a patient's supplement or drug use during this time). Most oncs just concentrate on the cancer and unfortunately neuropathy doesn't get much attention from them after they reduce the oxaliplatin or capecitabine dosage or after treatment is over. We need data to understand how to fix this problem.

Hope this helps!
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 12/18/2019, CEA<1

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Fingertip and toe numbness from Cape or Oxaly?

Postby lakeswim » Mon Dec 10, 2018 7:44 pm

Thanks, JulieJ. Very informative. Right after I wrote my post, my husband said, "Look at your toes!" And, yes, my toes/feet were a bit purplish. So, I'm wondering whether my attempt to keep them cool (bc heat bothers me) is not a good idea. Perhaps if I can't feel them, the circulation isn't ideal? Is this a problem? I don't know.

And you are right - nobody pays attention to some of this stuff once you are done with chemo. Studies should be done!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Fingertip and toe numbness from Cape or Oxaly?

Postby teachpdx » Wed Dec 12, 2018 10:32 pm

I never took Oxaly, but I had a bad case of HFS & still have issues with cold hands/feet. If my hands get cold I need an external source to get warm again. Sometimes walk around with my hands tucked under my armpits.

I get the not liking your feet hot so I would suggest testing cold sources on more sensitive areas as a baseline and also pay attention to color. Best of luck - Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Fingertip and toe numbness from Cape or Oxaly?

Postby NHMike » Thu Dec 13, 2018 12:05 pm

For me, the Oxaliplatin results in numbing and tingles in my toes. The Cap gave me a bit of arthritic feeling in the knuckles on my hands. The numbing in the toes increased about a month after ending treatment. The arthritic feeling declined with time.

Cold exacerbates the numbing/tingles.
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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