neuropathy - is this weird?

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
vickster
Posts: 126
Joined: Sun Jan 09, 2011 7:56 pm
Location: Central Texas

neuropathy - is this weird?

Postby vickster » Mon May 23, 2011 9:47 pm

I started to have tingling in my feet and random muscle spasms throughout my body after my 7th round of FOLFOX, which was about a month ago. My onc reduced the amount of oxi for my 8th round. Since then, the muscles spasms have been less frequent and less intense, but I continue to have the tingling in my feet. The best way I can describe this tingling is it is like a power surge starting from my calves then ending up in my feet with a brief tingling sensation. Over time, I noticed that it happens only during certain movements, but couldn't pin point which movements. Well, today, I finally figured out what triggers it - when I jerk my chin down to my chest. So, right now, if I jerk my chin down to my chest, I get this power surge that ends up in my feet with a really brief tingling sensation.

Has anyone experienced this? Is this cause to reduce the oxi more?
:-) Vicki
12/14/10 Dx at age 40; staged at IIa, T3N0M0
1/17/11 FOLFOX starts, Oxi reduced for Rounds 8-9, 5FU/LV for Rounds 10-12
7/6/11 LAST CHEMO TREATMENT!
Lynch negative

5/26/11 Mom dx with Stage III colon cancer at age 75 :-(
FOLFOX starts 7/18/11 :-(

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: neuropathy - is this weird?

Postby jjlist » Mon May 23, 2011 9:55 pm

i had that exact symptom. it went away. my neuropathy hasnt. its 7 months since my last folfox. there is no improvement in the neuropathy. i did 10 sessions. i wished i had stopped after 8. i think i pushed it too far. how do your feet and hands feel now?. mine were pretty bad goint into 10. thats why i stopped it. then it got worse around 4 weeks after session 10 was over. and has still not let up.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

User avatar
Bill5107
Posts: 1376
Joined: Sun Jul 11, 2010 5:50 pm

Re: neuropathy - is this weird?

Postby Bill5107 » Mon May 23, 2011 10:53 pm

vickster wrote:...Well, today, I finally figured out what triggers it - when I jerk my chin down to my chest. So, right now, if I jerk my chin down to my chest, I get this power surge that ends up in my feet with a really brief tingling sensation...



WTF! :shock:

I thought to myself "oh yeah, THAT makes sense.... She's saying if you do this" <and I dropped my chin to my chest> YOWEE! =-o

I'll be damned if I didn't get that exact jolt through my feet and tingling sensation!

This weekend I noticed the jolts thing and couldn't pin down any causes, I just figured "it was what it was" I was tired out from a day helping the boys rock-climb. I tried it too, but was too weak (and overweight and not-limber) enough to climb the crazy rocks the kids seemed to just scamper up! I've had days where it was very uncomfortable to walk barefoot and tingling most of a day, but the jolts have been rare before I ended my FOLFOX rounds. I cannot believe I'm still learning new things about side effects!

So vickster! I have to say I'm in tears now laughing at how I can actually _cause_ the annoying sensations I had this weeken!

It's probably a good thing my wife is in bed already or she's probably look to have me committed right about now!

:mrgreen:
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

User avatar
Terry
Posts: 5536
Joined: Wed Oct 03, 2007 10:36 pm
Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: neuropathy - is this weird?

Postby Terry » Mon May 23, 2011 11:37 pm

O.K. your officially all wierd! Just kidding :lol: That is strange though. There must be a nerve that goes from the neck and ends at the feet which isn't so far fetched. We have a lot of nerves in our body. That's why things like massaging the palm of your hand can relieve a headache.

I don't remember, no actually I never checked to see if I had the jolt you described when I bent my neck. I haven't had that in a couple of months, but if I do again, I'll try that. I do have neuropathy but it's only in the top of my toes, I lucked out. I don't know if you should have your dose cut or not. Ask your onc. I know my dose was way to high, because I had so many facial nerve problems and was sick. I had oxi every 3 weeks and when they do that they do a higher dose than every two. All I know is oxilaplatin sucks.

Maybe someone else on here will have better advice. Do you by chance know what your doseage is? I have my paperwork that shows what my dose is, then we could compare and see if your getting a higher dose than normal.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

Rick7
Posts: 322
Joined: Sun Mar 15, 2009 5:38 pm
Location: Los Angeles

Re: neuropathy - is this weird?

Postby Rick7 » Tue May 24, 2011 1:08 am

It is very common in Chemo patients and people with spinal nerve damage.
Lhermitte's sign
http://en.wikipedia.org/wiki/Lhermitte%27s_sign

I first noticed it when I was driving. Mine progressed to where arm movements would trigger it. It is gone now. It's something I miss from Chemo days.
CC DX 1-7-09 at age 40 - Stage IV, T4-N1-M1
Surgery 1-16-09 - Folfox6 Feb-Aug 2009
Clear scans - PET/CT 9-09, CT 3-10, CT 9-10
Head MRI 3-11, CT 9-11
Head CT 2-12, PET/CT 9-12

User avatar
Canadianmom
Posts: 603
Joined: Wed Nov 03, 2010 6:29 pm

Re: neuropathy - is this weird?

Postby Canadianmom » Tue May 24, 2011 1:25 am

Funny you posted this as I was asking the same question in another thread. I also have the same sensation when u nod my head .... Nerve zing in legs and feet. I find myself doing it all the time. I just completed my eleventh round and even though my onc reduced the oxi to 50%, the side effects have been much worse than previous experiences. I think I will have the oxi cut from my last round. Also,when I extend my arms I get a nerve impulse in my hands. Guess it's the cumulative effect of oxi. This week has been hard. Now I am worrying about permanent damage.
30/09/10 Dx mCRC/ 39 yrs old
08/11/10 liver met; Stage IV
23/11/10 PET 2 lit LNs
25/11/10 RFA to liver met
13/12/10 Folfox 6 plus Avastin.
15/03/11 After 7 rounds. NED. No further tx. 2014 still NED
Praying for patience and strength.

User avatar
vickster
Posts: 126
Joined: Sun Jan 09, 2011 7:56 pm
Location: Central Texas

Re: neuropathy - is this weird?

Postby vickster » Tue May 24, 2011 6:46 am

I too worry about permanent damage. I can't remember the dosage that I got last time.

Wow, this has a name - THANKS, Rick! Very cool.

Bill, you crack me up!
12/14/10 Dx at age 40; staged at IIa, T3N0M0
1/17/11 FOLFOX starts, Oxi reduced for Rounds 8-9, 5FU/LV for Rounds 10-12
7/6/11 LAST CHEMO TREATMENT!
Lynch negative

5/26/11 Mom dx with Stage III colon cancer at age 75 :-(
FOLFOX starts 7/18/11 :-(

User avatar
DianeWantsToStay
Posts: 40
Joined: Tue May 24, 2011 3:55 am
Location: Oregon

Re: neuropathy - is this weird?

Postby DianeWantsToStay » Tue May 24, 2011 7:58 am

I've got Lhermitte's Sign due to my MS, albeit mildly. I'm in the middle of my fourth round of chemo and just today the Lhermitte's Sign went full blown. That felt weird. My oncologist and i have been discussing how they don't really know how the chemo will effect the MS. Sorry for those of you experiencing this but glad to hear about it. Stuff like this happens to me and I have to wonder if my MS is getting worse or if it's a side effect of the chemo. I'm a little worried that it worsened so quick for me... I'll have to talk to the doc abut it next time i see him.
dx multiple sclerosis 1/08
dx stage IV colon cancer 3/11

Give me health and a day, and I will make the pomp of emperors ridiculous.
Ralph Waldo Emerson

User avatar
Karen32
Posts: 180
Joined: Wed Oct 27, 2010 10:38 am
Location: Buffalo, NY

Re: neuropathy - is this weird?

Postby Karen32 » Tue May 24, 2011 9:00 am

OMG! I am now sitting at my desk nodding my head up and down and low and behold, I have the same jolt! I never related the jolt of tingling in my legs and feet to the nodding of my head. Truly bizarre side effect and thank you for sharing. It sure explains a lot!
dx at 37 YoA
9.9.10 Dx Stage IIIC Colon Cancer
9.9.10 Temp colostomy
12.3.10 Started Chemo; Folfox
2.18.11 Negative for HNPCC
4.29.11 Pet results show NED!
9.22.11 Clean scope! :)
11.7.11 Reversal failed
CT Scan results show NED: 8/11, 3/12, 3/13

User avatar
hopeful
Posts: 1372
Joined: Mon Jan 04, 2010 11:43 am

Re: neuropathy - is this weird?

Postby hopeful » Tue May 24, 2011 1:55 pm

My husband had the exact same thing, even after they reduced the dosage. That drug does some weird stuff!
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

patricia
Posts: 43
Joined: Tue Jan 26, 2010 5:50 am
Facebook Username: Patricia Mindlin Woodruff

Re: neuropathy - is this weird?

Postby patricia » Tue May 24, 2011 6:35 pm

I have the same thing. It's a little like having a sore tooth that you can't stop touching with your tongue. Sometimes I bend my head just to see if it is really tied to the feelings in my legs/feet. It is! Glad you posted this ~ I was too chicken to mention it. It has been 12 weeks since chemo ended and my neuropathy in my feet was at its worst today. My poor toes!
Rectal cancer dx 11/09
T2 possible N1
radiation/with 5FU pump almost made 6 weeks Jan - Mar/2010
bracheotherapy 4X April/2010
LAR w/temp ileostomy June/2010
Folfox 12X starting Aug/2010 - ended Feb/2011
Takedown April 27, 2011

User avatar
vickster
Posts: 126
Joined: Sun Jan 09, 2011 7:56 pm
Location: Central Texas

Re: neuropathy - is this weird?

Postby vickster » Wed May 25, 2011 12:13 pm

So, I'm getting another dose of oxi today for my 9th round, then no more for my 10th-12th rounds. I am so excited!!!! Ice cold drinks and Blizzards are in my near future! And, I was wondering if I was going to be able to go swimming this summer, and now I know I will be able to! So very excited!!!
12/14/10 Dx at age 40; staged at IIa, T3N0M0
1/17/11 FOLFOX starts, Oxi reduced for Rounds 8-9, 5FU/LV for Rounds 10-12
7/6/11 LAST CHEMO TREATMENT!
Lynch negative

5/26/11 Mom dx with Stage III colon cancer at age 75 :-(
FOLFOX starts 7/18/11 :-(

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: neuropathy - is this weird?

Postby jjlist » Wed May 25, 2011 1:15 pm

oxi kicked my ass
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

StopDropRoll
Posts: 2
Joined: Fri Oct 08, 2010 12:54 pm

Re: neuropathy - is this weird?

Postby StopDropRoll » Fri May 27, 2011 7:34 am

I've got the shock. I finished my last of 12 rounds in March 2011 and the last 2 or 3 rounds I noticed the symptoms of my neuropathy were lasting longer. They continued to get worse for about 6 weeks and became painful all the time to the point where I was not sleeping well. The chin down leg shock thing was annoying and I felt it from my butt to my heels. My doc gave me meds to reduce the symptoms but they made me too drowsy the next day plus after they didn't really do much anyway.

Over the last month I have noticed improvements in my symptoms. The chin down leg shock is nearly gone and I can sleep thank God but my finger tips and soles of my feet are numb to touch. At the same time it feels like my shoes are full of dirt and I finally have stopped checking to see if they are.

My improvements are so slow that I don't notice them day-to-day but when I think back to where I was a month ago I realize it's getting better slowly. I just hope it continues to get better.

crucialminutia

Re: neuropathy - is this weird?

Postby crucialminutia » Sun Jan 29, 2012 2:46 pm

FWIW, I'm also experiencing a quick-head-nod-induced jolt and momentary tingling sensation which flashes simultaneously from the inside of each of my calf muscles to each of my big toes-

I'm posting in this old thread in the hope that some of the previous posters may be reminded to post an update/follow up on their progress-

Thanks!


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



Who is online

Users browsing this forum: No registered users and 124 guests