oxaliplatin

donnyb
donnyb Member Posts: 22
edited March 2014 in Colorectal Cancer #1
Hi everyone! Havent written for a while due to major surgery. Went in for a sigmoidoscopy and my doc perforated my colon. Took out some tumor while he was in there but it was touch and go for a while. Renal failure, pneumonia, you name it. I'm lucky to be alive today after 3 weeks in intensive care. Started oxaliplatin today and got some side effects already. Whats up with this sharp pain in my jaw when I first swallow something? Does that last long? Sure surprised me when it first happened. Best to all, Don.

Comments

  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #2
    Hi Don -

    Sorry to hear about your trouble, but it sounds like you are doing better. What's up with the jaw thing? We call it the "first bite" syndrome. A known side effect of oxaliplatin. With me, at least, the extreme cold sensitivity (face puckering at any contact with cold liquids) and the "first bite thing" subsided after the first week. Other neuropathies lasted longer and by the end of my 6th cycle I endured what to me was "morbid coldness" in my extremities, but that was December and only lasted about 4 weeks - might not even be an issue in the summer.

    Take care (and it sounds like you are experiencing normal oxaliplatin symptoms)

    Betsy
  • taraHK
    taraHK Member Posts: 1,952 Member
    #3
    Hi Don,
    I was so sorry to learn about the perforated colon and subsequent problems -- so glad that is behind you now.

    I, too, experienced "that jaw thing" while on FOLFOX (oxaliplatin). For me, it just lasted the first bite or two. It lasted the first few days after I finished each cycle. I had it every cycle, but after I finished folfox, it went away immediately. Try to avoid cold food/drink. (But I still had it anyway). Good luck with the folfox. I completed 11 out of 12 planned cycles. Best wishes.
  • jerseysue
    jerseysue Member Posts: 624 Member
    #4
    I had the jaw thing as well but my onc thought I was nuts when I explained that side effect. It lasted a long time and every now and then I still get it. To me it was more like a tingle a painful tingle but a tingle not a sharp pain. The side effect that got me was sometimes my eyelids did weird stuff. One day I was walking and it started raining. I couldn't see the rain was making my eyelids wack out. Almost like a muscle spazam in my eyelids. Hang in there!
  • jams67
    jams67 Member Posts: 925 Member
    #5
    My jaw or lymph nodes in my jaw did the same thing. It reminds me of eating a lemon. first I learned to lick the first bite and gradually eat it. That works pretty well. I had forgotten about that side effect until you mentioned it and I've only be off chemo since April. See how soon we go on with life. jams
  • JADot
    JADot Member Posts: 709 Member
    #6
    Good grief (think Charlie Brown) Don! You've been through hell by the sound of it. Glad you're on the mend and sound so matter-of-fact about it all. You are amazing.

    Yup, Oxaliplatin, bad stuff! I usually get the side effects right away too. Jaw pain is a big part of it. You will also likely to get cold sensitivity in hands and feet and the back of your throat. Gotta stay away from cold drinks and cold water. Hands and feet will probably tingle too after a while. These side effects will likely follow you for the whole duration of the treatement. I had 8 rounds, and things got progressive worse due to the culmulative effects. Sorry I don't have better news for you, but you sounds like a guy who want the straight truth.

    Best of luck to you and do check in again if you get other side effects.

    Cheers,
    Ying
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #7
    Oh Don!!

    I was wondering where you were. I don't have the jaw "twinge" but do have the sensitivity to cold when I eat or drink. It does get better some before I start a new treatment. My mouth gets numb too with cold stuff now. Very weird feeling. Watch your hands and feet too. I have a lot of sensitivity to cold in my hands. My feet aren't so bad. At least it is summer right now. Glad to hear you made it through so much. HUGS. Also I have a weird problem with the 5fu. It hurts to cry and you know how emotional us women can be. Just in case it happens to you. Take care and keep us posted.

    Lisa
  • cherriann
    cherriann Member Posts: 155 Member
    #8
    hi don,
    sorry to hear all that has happened but glad to hear from you.hope all starts to go your way i think it is about time. cant give you any advice on oxal. dont go on that till after mysurgery on friday but it good to know that this could be a side effect.
    take care, cherri
  • Kanort
    Kanort Member Posts: 1,272 Member
    #9
    Hi Don,

    Goodness, what an ordeal you have been through! It sounds like the others have covered all the side effects that I encountered. I chose not to take the steriods so I was plagued with pretty severe nausea. The jaw thing always took me by surprise as well. I think it is because it happens so suddenly. I hope that your side effects will be minimal! Please keep us posted.

    Kay

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