Severe jaw pain/spasms on Oxy?

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Comments

  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #22
    Buzzard said:

    Yep its Oxy.....
    and if he doesn't believe it tell him to try a little oxy and see for himself. First treatment should do it for him...LOL...It will go away about 2 weeks after the oxy is overwith.....I had it myself and send him in here if he doesn't cooperate, we'll rough him up a little for ya...LOL....Good Luck {{hugs}}}}, Clift

    Thanks for the laugh Clift!
    I'd like to tell him to "try" a little as recreational drug use...
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #23
    Thank you everyone
    I copied and pasted into an email that I sent to my colon cancer nurse navigator. She really goes to bat for me when I need her. I really appreciate all of your replies - an opportunity to educate a good oncologist on somethings he hasn't experienced before.

    He's a tough one - a fighter that wants to go full speed ahead against cancer. Everyone in the health industry that knows him has told me they would have him as their oncologist if they needed one. But he does need to back off when necessary. He already showed that he will do that by removing my bolus of 5-FU last Thursday. I think once I fill him in on all the issues from round #2, plus your replies of oxy jaw pain, etc., he will back off on the oxy for me also. I just can't tolerate as much as they expected me to. And I am usually VERY tough - so this is hard on us all (myself, my family, my medical team) - me backing off. But I do want to be alive with some quality of life when I'm done with this battle.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #24
    Kathryn_in_MN said:

    Thank you everyone
    I copied and pasted into an email that I sent to my colon cancer nurse navigator. She really goes to bat for me when I need her. I really appreciate all of your replies - an opportunity to educate a good oncologist on somethings he hasn't experienced before.

    He's a tough one - a fighter that wants to go full speed ahead against cancer. Everyone in the health industry that knows him has told me they would have him as their oncologist if they needed one. But he does need to back off when necessary. He already showed that he will do that by removing my bolus of 5-FU last Thursday. I think once I fill him in on all the issues from round #2, plus your replies of oxy jaw pain, etc., he will back off on the oxy for me also. I just can't tolerate as much as they expected me to. And I am usually VERY tough - so this is hard on us all (myself, my family, my medical team) - me backing off. But I do want to be alive with some quality of life when I'm done with this battle.

    Just for chits and giggles
    My oxal infusion was 3 1/2 hrs long. If they lengthen it to say 5-6 hrs it will make the stay longer but they seem to think that the side effects are a lot less, or they can cut it back 20% and infuse longer. Sometimes not by fault of their own but just the magnitude of patients they may try to see if infusion time can be quick to get more patients their treatments . If you don't have any trouble then great it moves it along faster, but if you are one of the ones that have bad side effects then you are the percentage that it can be infused at a slower rate. It won't hurt to try if you want to trade longer treatment time for possible less side effect.......Good Luck to whatever you choose.....Clift
  • Steve Z
    Steve Z Member Posts: 51
    #25
    Kathryn_in_MN said:

    Thank you everyone
    I copied and pasted into an email that I sent to my colon cancer nurse navigator. She really goes to bat for me when I need her. I really appreciate all of your replies - an opportunity to educate a good oncologist on somethings he hasn't experienced before.

    He's a tough one - a fighter that wants to go full speed ahead against cancer. Everyone in the health industry that knows him has told me they would have him as their oncologist if they needed one. But he does need to back off when necessary. He already showed that he will do that by removing my bolus of 5-FU last Thursday. I think once I fill him in on all the issues from round #2, plus your replies of oxy jaw pain, etc., he will back off on the oxy for me also. I just can't tolerate as much as they expected me to. And I am usually VERY tough - so this is hard on us all (myself, my family, my medical team) - me backing off. But I do want to be alive with some quality of life when I'm done with this battle.

    No more snacking
    I feel for you. My first round was last week. I took a bite of donut hole while getting my Oxy and had the jaw pain. I've had it every meal since. No more snacking between meals. Three meals a day no more, no less. I find it's a little easier when I start with a small bite of something bland like a cracker. The pain is still there, but it's quick with less intensity. When I was disconnected from the pump I told them about it and they asked if I wanted to extend my next appointment just as Clift suggested. I'll let you know if it works. Let me know if something works for you.
  • lesvanb
    lesvanb Member Posts: 905
    #26
    Buzzard said:

    Just for chits and giggles
    My oxal infusion was 3 1/2 hrs long. If they lengthen it to say 5-6 hrs it will make the stay longer but they seem to think that the side effects are a lot less, or they can cut it back 20% and infuse longer. Sometimes not by fault of their own but just the magnitude of patients they may try to see if infusion time can be quick to get more patients their treatments . If you don't have any trouble then great it moves it along faster, but if you are one of the ones that have bad side effects then you are the percentage that it can be infused at a slower rate. It won't hurt to try if you want to trade longer treatment time for possible less side effect.......Good Luck to whatever you choose.....Clift

    lengthening the infusion time
    I agree with Clift about a longer infusion time. My total time getting the oxy on the first day was 8 hrs. 30 min calcium/mag before then the oxy cocktails with the dexamethasone and anti-nausea, then 30 min calcium/mag at then end and then hook up the 5FU pump plus bolus. One time one nurse who I didn't respect tried to speed up the infusion time but I noticed right away (light-headedness was a first clue) and had it slowed down back to the regular time. I did not have bad side effects like you are having Kathryn, but I do have residual grade 1 neuropathy which is slowly slowly getting better (now almost 6 months from last infusion).

    Leslie
  • donjen
    donjen Member Posts: 1
    #27
    Jaw spasm

    I know this forum happened a few years ago now but we've only just come across it.  I'm Jenny, the scribe for my husband Don who has pancreatic cancer but is currently undergoing his 2nd cycle of three of Oxaliplatin and Xeloda.  He's finding that the most distressing side-effect of this treatment is the agonizing 'first-bite' jaw spasms following the infusion of Oxaliplatin on Day 1, however this problem gradually tapers off over the following week.  We're finding that having a very small first mouthful of food and letting it rest on his tongue before actually eating seems to cause the pain to be less severe.  He's also experiencing intolerance to anything that's cooler than lukewarm and has the pins and needles feelings in his extremities.  Maybe he'll develop a liking for warm orange juice & smoothies in time ... I don't think!!!

    We're amazed that all the medicos and nursing staff profess to being unaware of this remarkable side-effect, especially when there are so many forums out there with folk describing this phenomenon.

    The other marked side-effect from this combined treatment is Don's constant feeling of lethargy & weakness, however all-in-all we're truly grateful that he's still here with us 16 months post-diagnosis.

    I've posted this comment in the hope that it will be of some help to others out that who've been told by their doctors that they 'weren't aware of this 'first-bite' side-effect' and therefore haven't been pre-warned about these initially quite frightening events. 

    Hang in there and keep fighting this rotten disease.

    Jenny

     

     

     

  • Coloncancerblows
    Coloncancerblows Member Posts: 296 Member
    #28
    I get that jaw spasm with

    I get that jaw spasm with every treatment (had 4 so far).  It's whenever I take the first bite of something.  It lasts for a few seconds then goes away.  After about a week, the jaw sensation goes away but it is annoying in the beginnng. 

  • Sima
    Sima Member Posts: 2
    #29
    I have the same jaw issues

    I am currently taking oxaliplatin and Xeloda for gastric cancer, and I am experiencing the jaw spasms that everyone here has been describing. None of my healthcare providers were aware of this side effect, so thank you for sharing your experiences. I am hoping that it will pass, since this is the fourth day of this experience. 

  • Woodytele
    Woodytele Member Posts: 163
    #30
    Jaw

    my Onc mentioned jaw pain, and a few times i tried to eat a burger and couldn't open my mouth all the way. It only lasted a day or so.  I wouldn't get too upset, there are crazy chemicals running through your blood. We are all doing the best we can, just another side effect to deal with, stay strong! 

  • Coachjim
    Coachjim Member Posts: 19 Member
    #31
    Old threads

    Most of the people who posted on this thread have been dead a very long time.  

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