pain in jaws after chemo

nsichler
nsichler Member Posts: 18
in Colorectal Cancer #1

I get 5FU and oxaliplatin I  get the finger and toe pain but also get similar pain shoot up the sides of my jaws when I put anything hot or cold in my mouth. It usually is only the first 2 or 3 bites of food. I mentioned to my oncologist but he doesn't seem to have heard of it before. Has anyone had this problem?

Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
    Happened to me too

    I'm surprised that your Oncologist hasn't heard of it. I know that I am not the only person on this forum who has experienced the same thing. 

    I always described it as feeling like I had bitten into tin foil; you know, the electric shock feeling you get when tin foil hits a filling. 

    So you are not alone, friend. 

    There was nothing I could do to prevent it, but for me, it was only the first few bites and then all was well. 

    Next time you see your Onc, tell him that he should add it to his list. 

    Sue - Trubrit

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #3
    Now that sounds familiar - my

    Now that sounds familiar - my Rick's onc said the same thing, although the oncology nurses told us it was normal.  Makes you wonder, doesn't it???  Nothing like having to educate an oncologist on chemo side effects. Yeah, it's sad.

    Best wishes always,

    Cyn

  • Steve444
    Steve444 Member Posts: 105 Member
    #4
    Fun with the Ox

    I hated that drug :)

    I'd have the jaw pain when opening my mouth to eat, but it went away in a few seconds.  This and of course the numbness in feet and fingers, lower back pain, pin pricks in the mouth and throat when drinking anything cold.  It did a great job on my tumors though, so for me it was worth it for a while.

  • John212
    John212 Member Posts: 116 Member
    #5
    Me Too

    I also had this same quirky side effect when I was on FOLFOX with 5FU. For me, the pain occurred only after the first couple of bites in any meal or snack and then went away. It also went away for good after maybe 5 or 6 treatments. It's definitely one of the quirkiest side effects I experienced but it also doesn't seem to have any lasting effect, either.

  • sdp
    sdp Member Posts: 181
    #6
    folfox
    • As everyone says it is a side effect of oxaliplatin -
    • There may be some supplements that may help -
    • Also u need to make a list of the pre meds they give along with the infusion
    • Are u getting calcium , magnesium and vitamin b6 and b12 ? 

    Once you have this Pl share with the forum and you may have some more info in case there is a difference in what others are getting and dealing with it .

  • pilarica
    pilarica Member Posts: 44 Member
    #7
    John212 said:

    Me Too

    I also had this same quirky side effect when I was on FOLFOX with 5FU. For me, the pain occurred only after the first couple of bites in any meal or snack and then went away. It also went away for good after maybe 5 or 6 treatments. It's definitely one of the quirkiest side effects I experienced but it also doesn't seem to have any lasting effect, either.

    same

    When on Folfox I had the neuropathy on my hands and I also had the jaw pain, as you said the first bite and it lasted for 4 or 5 seconds.......... I have been off Folfox for 2 month now and I still have the jaw pain....... I wonder how long it is going to last.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #8
    Everyone has this problem,

    Everyone has this problem, it's weird that your oncologist said that.  Maybe he misunderstood.  It was always the worst part of eating.  I'm two years out, the jaw pain is gone, hands are fine, heels still hurt but not everyday.  I can get out of bed some days right away and sometimes I have to wait a few minutes.  Some days they just hurt all day, I've gotten used to it.  There are some natural things that you can do to help but I haven't gotten to a podiatrist or an herbalist yet.  Too many days off from work.

  • robval30
    robval30 Member Posts: 13
    #9
    Trubrit said:

    Happened to me too

    I'm surprised that your Oncologist hasn't heard of it. I know that I am not the only person on this forum who has experienced the same thing. 

    I always described it as feeling like I had bitten into tin foil; you know, the electric shock feeling you get when tin foil hits a filling. 

    So you are not alone, friend. 

    There was nothing I could do to prevent it, but for me, it was only the first few bites and then all was well. 

    Next time you see your Onc, tell him that he should add it to his list. 

    Sue - Trubrit

    Me too

    I also had the jaw pain in the muscles, like said before after chewing for a little while it would subside. If I ate something, a few hours later, same thing. I would say it's a side effect of folfox. 

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #10
    It's very common

    Surprised your onc hadn't heard of it.  It's an Oxi side affect, and goes away after second or third bite, but yes, it is painful those first couple of bites.  Been doing Oxi this round every week with one week off every 4 weeks, funny what you get used to.

    Winter Marie

Discussion Boards