Jaw Pain

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Jaw Pain

Postby d-it-up » Fri Mar 09, 2012 1:03 pm

Has anyone ever experienced Jaw Pain as a side effect of Oxaliplatin/5FU?

I had my first Oxi injection one week ago today, followed by 46 hours of 5FU. When I haven't eaten for a while, and take my first bite, the back of my jaw cramps up like I have just eaten something very sour. The pain goes away after about 5-10 seconds, and then I am fine with every additional bite. It doesn't matter what I eat - even pretzels cause this type of reaction.

I mentioned it to my nurse and she said she had one other patient who had experienced similar symptoms in the past, and it went away after a few rounds of treatment.

Just wondering if others have experienced this, and if so - did it go away?

Rectal Cancer Diagnosed 10/5/11 @ 38, 3T-0N-0M
Chemoradiation 10/31-12/8 (Xeloda)
Surgery 1/30/12 - 0/26 nodes
9 rounds of Oxi/5FU
Illeostomy reversal surgery 8/13/12
Declared NED!

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Re: Jaw Pain

Postby sadysue » Fri Mar 09, 2012 1:14 pm

Surprised the nurse only saw it in one patient - it's a common reaction to oxaliplatin. I had it from my first infusion and I am pretty sure others here will tell you of similar experiences. Pain at first bite then subsequent bites are normal. It only stopped when they stopped the oxali on me. I had my last two infusions minus oxali and reduced 5-FU dosage as well. Good luck with your treatment - kick butt!
Mary Ann
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012

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Re: Jaw Pain

Postby BrownBagger » Fri Mar 09, 2012 1:16 pm

Yes, I think "the jaw thing" is very common with people on oxi. I had it, though it usually came and went pretty quickly.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Re: Jaw Pain

Postby stephh » Fri Mar 09, 2012 1:56 pm

Yes! I definately had exactly what you are mentioning. completely normal. :D
2/9/11 Dx 33 yrs old-Stage IV
3/1/11 LAR-peritoneal met found
4/1/11 5 rds folfox/avastin
6-7/2011 radiation/xeloda
8-9/2011 3 rds folfox
10/12/11 mets-peritoneum
12/19/11 HIPEC
5/4/12-cervical mets
6/8/12-Hysterectomy/liver resection/HIPEC #2

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Re: Jaw Pain

Postby dianne052506 » Fri Mar 09, 2012 2:09 pm

You'll sometimes see it referred to here as "first-bite syndrome," but that's not an official name. I had it with every round of oxaliplatin. It wore off in-between rounds, and then came back with the next infusion. I've been off oxaliplatin for more than 2 years. Occasionally, I'll get it again, but for the most part, it left when I finished oxaliplatin.
Some people say they can lessen the intensity with various tricks, but I never could. I am a big one to have a bottled drink and something small to munch on when I am driving. I learned very quickly to always take my first bite/swallow when I was stopped!
Good luck with the rest of your chemo.
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Re: Jaw Pain

Postby Kathryn in MN » Fri Mar 09, 2012 4:14 pm

Yep - I had it. It did stop when I stopped getting oxaliplatin. Mosly an annoyance compared to the other side effects. I learned to keep eating once I started, so it wouldn't happen again. If I took a break for a while when I ate, it would happen again, and it was pretty painful.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining

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Re: Jaw Pain

Postby Nickmark59 » Fri Mar 09, 2012 4:24 pm

They took me off OX because of jaw pain and it trying to lock up . My Onc. told me he never saw this before and later found out at a conference that it develops in those with TMJ it is pushed to fast .
You may want to discuss this with your Onc.
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox

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Re: Jaw Pain

Postby juliej » Fri Mar 09, 2012 4:58 pm

First bite pain/jaw pain is a common side-effect of Oxi, at least on this forum. I had it after every Oxi infusion. It would wear off after a few days, but it hurt like heck. It goes away completely when you stop Oxi. Try taking a very small first bite and chewing very slowly. The next bites should feel normal. Hope this reassures you!
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

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Re: Jaw Pain

Postby kpjpmom » Fri Mar 09, 2012 7:33 pm

I too had this problem every time I had a chemo infusion. First two bites and then it would subside. Very normal and unfortunatly one of the side effects. Hang in there!
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

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Re: Jaw Pain

Postby westie68 » Sat Mar 10, 2012 8:15 pm

Yup, me too. But after the first oxaliplatin treatment I started taking 5-10 grams of L-Glutamine powder in juice, 1 calcium/magnesium tablet, 3 alpha lipoic acid tablets, and 1 vit B6 tablet every day (and still do). I never really had much of a problem after that (and very little neuropathy and cold intolerance either). I had 12 treatments of oxaliplatin + irenotecan + 5fU + leucovin.

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Re: Jaw Pain

Postby deb1223 » Sat Mar 10, 2012 8:47 pm

Oh boy did I ever have the jaw pain. I also suffered with my eyes burning when I cried. Did my best not to cry but I have a tendency to cry when stressed and there's nothing more stressful then fighting cancer. Best of luck to you. :wink:
52 Yr. old Female, DX July 2010
Stage IV CC, 21 mets to liver, 1 to lungs
12 Rounds Folfox
To date no surgeries
Enlarged spleen
Been on Avastin only since Mar. 2011

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Re: Jaw Pain

Postby frugal » Mon Mar 12, 2012 9:40 am

I've had it since the beginning. This round, 7, has been the worst. Hurts like hell for the first 20 seconds or so of chewing. It also lasted five or six days this time. :?
John, 40 @dx
Diagnosed 09/2011, Surgery 10/2011
Stage IIA T3N0M0
12 complete rounds of Folfox
2016-03-22 NED

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