Anything to avoid or relieve first bite pain after FOLFOX ?

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Indigo
Posts: 7
Joined: Sat Mar 21, 2020 9:33 pm

Anything to avoid or relieve first bite pain after FOLFOX ?

Postby Indigo » Mon Apr 13, 2020 10:16 pm

Hi,

I had my first of six infusion of FOLFOX on Friday and by first day evening, observed first bite pain with anything that i ate.

The pain fades away but was wondering if someone has some experience to avoid it or relieve it once it happens ?

Thanks
2020
01/27 - Colonoscopy, 43yr M
01/31 - Report - Mod. diff, recto-signmoid, CEA 3.4
01/31 - CT - Clean, few sub centimeter Liver legions
02/05 - Ultrasound Liver - Indeterminate.
02/12 - PET Clean. Liver legions may be below resolution
02/12 - MRI Liver with Eovist - Liver Indeterminate
02/20 - MRI ABD / Pelvis contrast - Liver lesions favored to hemangiomas.
02/25 - Colon Resection
03/10 - Path Report - 1/16 lymph node positive. Stage: pT2N1a
04/10 - CEA : 1.6
- FOLFOX starts (6 cycles)

lovelife789
Posts: 148
Joined: Thu Aug 24, 2017 5:28 am

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Postby lovelife789 » Tue Apr 14, 2020 6:10 pm

Avoid cold things, sour things. I also noticed whenever saliva came out from the side of mouth, it would hurt too, not just when I took the first bite. Like if someone was cooking up something delicious, and I was hungry, even the small walk to the dinner table, I could feel my jaw hurting a bit. So I lit candles in my room before dinner and I ran out to have dinner as soon as food was ready.

When I took first bite of every meal, I just let the first bite of food stay in my mouth without chewing at all until the soreness went away. I would repeat it a few times before it resumed normal. didn't take long. It didn't bother me much honestly.

Hope this helps.

Lovelife
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

Carboxo
Posts: 9
Joined: Sat Nov 02, 2019 5:10 pm

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Postby Carboxo » Wed Apr 15, 2020 2:19 am

My sister had these problems. Helped to eat soup so no biting. Avoid cold. Jaw would just lock up. She did a lot of massaging her jaws. Hang in there.
DS: caregiver
42, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

justin case
Posts: 4262
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Postby justin case » Wed Apr 15, 2020 1:05 pm

You get used to it after a while now you know what it is. It's the cold air that bothered me a lot .
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Postby juliej » Wed Apr 15, 2020 5:35 pm

Agree with lovelife. Just holding a spoonful of food in your mouth before biting seems to lessen it somewhat.

It's that or chew the first bite really fast to get it over with so you can get on to bite #2 and no pain! :D It's a real PITA, but goes away a few days after the infusion.

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

vincent33
Posts: 16
Joined: Thu Mar 12, 2020 9:11 pm
Facebook Username: Vincent Smith

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Postby vincent33 » Sun Apr 19, 2020 6:39 pm

I suck on ice during my infusion of Folfox and it greatly reduces first bite pain. There is also a a device (and possibly other brands) that are supposed to help: https://www.chemomouthpiece.com/
January 2019, pain in abdomen that I thought was muscular or nerve related persisted many months
November 2019, CT scan revealed large mass in colon
December 10, 2019, surgery, right hemicolectomy, 8cm t4b tumor removed, margins clear, 47 negative nodes removed, 1 positive node removed
February and March 2020, beginning week 8 after surgery have received 3 folfox infusions every 2 weeks
have been applying ice to hands and feet during infusions

User avatar
horizon
Posts: 1535
Joined: Tue Apr 12, 2011 10:10 pm

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Postby horizon » Sat Apr 25, 2020 5:49 pm

It could be completely a placebo but I got advice on here to swish apple juice in my mouth before eating. I remember I kept doing it. Here's the thread:

viewtopic.php?t=27973
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Indigo
Posts: 7
Joined: Sat Mar 21, 2020 9:33 pm

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Postby Indigo » Mon May 11, 2020 8:07 pm

Thank you for your replies,

Had 3 / 6 FOLFOX cycles and the first bite pains persists. Got used to it now, i guess. Keeping food in mouth for sometime before chewing make it more bearable ..

It fades after few days though..

Thanks,
2020
01/27 - Colonoscopy, 43yr M
01/31 - Report - Mod. diff, recto-signmoid, CEA 3.4
01/31 - CT - Clean, few sub centimeter Liver legions
02/05 - Ultrasound Liver - Indeterminate.
02/12 - PET Clean. Liver legions may be below resolution
02/12 - MRI Liver with Eovist - Liver Indeterminate
02/20 - MRI ABD / Pelvis contrast - Liver lesions favored to hemangiomas.
02/25 - Colon Resection
03/10 - Path Report - 1/16 lymph node positive. Stage: pT2N1a
04/10 - CEA : 1.6
- FOLFOX starts (6 cycles)


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