I thought I was doing so well...

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Spazactaz
Spazactaz Member Posts: 15
in Head and Neck Cancer #1
Tomorrow will be 5 weeks since radiation... about a week ago I was starting to be able to eat lots of different foods with minimal pain. Then (this is the only thing I can think of that changed) it was time to go off my dexamethasone pills, and the past few days my tongue pain has been more excruciating than EVER. It used to mostly just be painful when I ate, now it's 24/7. Today I couldn't bare it anymore so I went back on the dexamethasone to see if it'll go back to how it was. Anyone experienced this? Or take that drug? I've read so many horrible things about it! :S

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    you are doing well
    Hi Spazactaz,

    Sorry I can not help with the tongue pain or Dexamethasone, but I can wish you better days. I do wonder, “You could eat lots of different foods”, you mean like regular foods? That is a plus in my book. Anyway, hope you feel better and get some good advice if not answers.

    Best,

    Matt
  • Laralyn
    Laralyn Member Posts: 532
    #3
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    Thinking of you
    I didn't have tongue pain, and my taking of dex was limited to the first few days after chemo. Sorry I can't help... just wanted to let you know that I'll be thinking of you and hoping for a quick turn-around back to where you were.

    Have you tried emailing or calling your doctor?
  • Spazactaz
    Spazactaz Member Posts: 15
    #4
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    Yeah regular solid foods...
    Yeah regular solid foods... it was SO exciting to not be limited to liquids! But even before, the liquids weren't too painful to get down... today my Ensure and smoothie absolutely KILLLLLLED my tongue, so much pain!

    I haven't called the doctor... all he ever tells me is to take more pain medication, or tries to prescribe my stronger ones.
  • Ingrid K
    Ingrid K Member Posts: 813
    #5
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    Spazactaz said:

    Yeah regular solid foods...
    Yeah regular solid foods... it was SO exciting to not be limited to liquids! But even before, the liquids weren't too painful to get down... today my Ensure and smoothie absolutely KILLLLLLED my tongue, so much pain!

    I haven't called the doctor... all he ever tells me is to take more pain medication, or tries to prescribe my stronger ones.

    may still need the pain meds at 5 weeks out
    Spaz, that would be my advice also... you still need the pain meds ! You are only a very short time out ....you might actually be at the height of the "cooking" process. Also if you are trying to eat real foods, you are probably aggravating the nerve endings in the tongue and trying to do that AND cutting down on the meds at the same time might explain the pain. At 5 week post, I was on hydrocodone round the clock at 6 hour intervals.

    Don't be too hard on yourself. the pain meds are for a reason--and you still have pain.
    GOOD LUCK to you.
  • Spazactaz
    Spazactaz Member Posts: 15
    #6
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    Ingrid K said:

    may still need the pain meds at 5 weeks out
    Spaz, that would be my advice also... you still need the pain meds ! You are only a very short time out ....you might actually be at the height of the "cooking" process. Also if you are trying to eat real foods, you are probably aggravating the nerve endings in the tongue and trying to do that AND cutting down on the meds at the same time might explain the pain. At 5 week post, I was on hydrocodone round the clock at 6 hour intervals.

    Don't be too hard on yourself. the pain meds are for a reason--and you still have pain.
    GOOD LUCK to you.

    I thought the cooking
    I thought the cooking process only lasted about 2 weeks after the end of treatment?
    But yeah that makes sense. I luckily haven't needed any pain meds at all up until this week. This super drastic change is crazy, I was not anticipating a huge step backwards in the recovery process. :(
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
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    Dexamethasone
    I hated the stuff, I only took it one cycle then no more....

    You might try to see if they will swap you to another type of drug.

    I pretty much used either I hated the stuff, I only took it one cycle then no more....

    You might try to see if they will swap you to another type of drug.

    I pretty much used either Hydrocodone, or Oxycotin both in liquid or pill form for during and after rads.

    It worked for me... They tried Roxanol once, liquid morphine... It did nothing for the pain and actually made me feel sick, so I scraped that after trying it twice.

    Only can tell you taht it'll get better over time.

    Best,
    Johnboth in liquid or pill form for during and after rads.

    It worked for me... They tried Roxanol once, liquid morphine... It did nothing for the pain and actually made me feel sick, so I scraped that after trying it twice.

    Only can tell you taht it'll get better over time.

    Best,
    John
  • hwt
    hwt Member Posts: 2,328 Member
    #8
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    Spazactaz said:

    I thought the cooking
    I thought the cooking process only lasted about 2 weeks after the end of treatment?
    But yeah that makes sense. I luckily haven't needed any pain meds at all up until this week. This super drastic change is crazy, I was not anticipating a huge step backwards in the recovery process. :(

    Cooking lasts up to 8 weeks.
    Cooking lasts up to 8 weeks. Are you certain you don't have a case of thrush?
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #9
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    Skiffin16 said:

    Dexamethasone
    I hated the stuff, I only took it one cycle then no more....

    You might try to see if they will swap you to another type of drug.

    I pretty much used either I hated the stuff, I only took it one cycle then no more....

    You might try to see if they will swap you to another type of drug.

    I pretty much used either Hydrocodone, or Oxycotin both in liquid or pill form for during and after rads.

    It worked for me... They tried Roxanol once, liquid morphine... It did nothing for the pain and actually made me feel sick, so I scraped that after trying it twice.

    Only can tell you taht it'll get better over time.

    Best,
    Johnboth in liquid or pill form for during and after rads.

    It worked for me... They tried Roxanol once, liquid morphine... It did nothing for the pain and actually made me feel sick, so I scraped that after trying it twice.

    Only can tell you taht it'll get better over time.

    Best,
    John

    Twice.
    Hi john,
    Is it my eyes or my Tablet, did you write everything twice on
    your comment about the pain meds? .......or was it a joke?

    God bless
    Tonsil dad,

    Dan.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
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    Tonsil Dad said:

    Twice.
    Hi john,
    Is it my eyes or my Tablet, did you write everything twice on
    your comment about the pain meds? .......or was it a joke?

    God bless
    Tonsil dad,

    Dan.

    Thrice the Pleasure, Thrice the Fun...
    I usually copy my reply before sending...because they have a habit of getting lost in translation....never to be seen again.

    I must have copied my reply, then went to check the spelling on Hydrocodone. When I thought I pasted the correct spelling, I actually pasted the original reply twice....

    I usually copy my reply before sending...because they have a habit of getting lost in translation....never to be seen again.

    I must have copied my reply, then went to check the spelling on Hydrocodone. When I thought I pasted the correct spelling, I actually pasted the original reply twice....

    I usually copy my reply before sending...because they have a habit of getting lost in translation....never to be seen again.

    I must have copied my reply, then went to check the spelling on Hydrocodone. When I thought I pasted the correct spelling, I actually pasted the original reply twice....

    I tend to type faster than my fingers spell correctly, as you can tell...

    Also, my main home laptop computer is missing the keyboard cap for D. If I don't hit that key especially hard, it won't show the d...LOL. So now you'll know if you see some "D"'s missing...

    If you are seeing double or triple here...it must be your eyes.

    JG
  • Redbanker
    Redbanker Member Posts: 36
    #11
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    Decadron
    This drug had a powerful effect on my boyfriend's general well-being post-treatment. (I can't remember why his radiologist prescribed it, but it was based on a good result after a particularly trying cisplatin session.) It seemed to bring back his taste buds and generally ameliorated the first couple of weeks post-treatment. However, since this is a steroid with all the downsides associated with steroids, his doctor did not keep him on it long and starting stepping down the dose after a week. Things then became very much less tolerable and those next 6-8 weeks were perhaps the toughest of the entire course. But that was all a year ago--finished treatment on June 28, 2011--and as everyone here who has made it past the shoals can tell you, it gets better. It's a slow but steady gradient, but how you feel now will not be your reality a month from now and with each succeeding month.

    Nancy
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
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    Tonsil Dad said:

    Twice.
    Hi john,
    Is it my eyes or my Tablet, did you write everything twice on
    your comment about the pain meds? .......or was it a joke?

    God bless
    Tonsil dad,

    Dan.

    editing problems
    I do that too, as I cut and paste stiff. And I insert m's and n's between words when working from my ipad. Makes it look like iverbendrunkin.
  • robinleigh
    robinleigh Member Posts: 297
    #13
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    pain meds
    My husband has always used Roxicet which I believe is like hydrocodone but no tylenol in it and it is in a liquid form which makes it much easier to swallow. I've always heard to "stay ahead of pain and not try to chase it" which works best for Andy.
  • katenorwood
    katenorwood Member Posts: 1,912
    #14
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    Pain..
    Spazactaz,
    Hey...you are in the healing process, and every"body" is different. I think that contacting your dr. is a good idea ! Pain meds are there for us to heal, and more importantly inable us to get the nourishment our bodies are needing. I am so sorry that some days we feel like we take 10 steps back in order to take two forward. Be kind to yourself, and do whaterver it takes to get through this. And you WILL get past it ! Warmest regards, Katie
  • Spazactaz
    Spazactaz Member Posts: 15
    #15
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    On my last day of radiation,
    On my last day of radiation, the dentist said I had thrush, the doctor said I didn't. I saw the dentist again today, and he says I definitely have thrush. What does this really mean though? Was told it's not painful. I've been taking nystatin since beginning of radiation... to try to prevent it. Guess it failed and is not getting rid of it.

    2nd day back on the dexamethasone... pain is STILL as bad as ever... do you think going off of it may not be what caused it? SO weird if not though. i do not want to be on it but will try a few more days..

    And thank you everyone!
  • hwt
    hwt Member Posts: 2,328 Member
    #16
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    Spazactaz said:

    On my last day of radiation,
    On my last day of radiation, the dentist said I had thrush, the doctor said I didn't. I saw the dentist again today, and he says I definitely have thrush. What does this really mean though? Was told it's not painful. I've been taking nystatin since beginning of radiation... to try to prevent it. Guess it failed and is not getting rid of it.

    2nd day back on the dexamethasone... pain is STILL as bad as ever... do you think going off of it may not be what caused it? SO weird if not though. i do not want to be on it but will try a few more days..

    And thank you everyone!

    Thrush is a yeast infection.
    Thrush is a yeast infection. My tongue burned really bad when I ate. In addition to the nystatin I was given fluconazole. It only took about 2 days before I noticed a marked improvement.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #17
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    hwt said:

    Thrush is a yeast infection.
    Thrush is a yeast infection. My tongue burned really bad when I ate. In addition to the nystatin I was given fluconazole. It only took about 2 days before I noticed a marked improvement.

    Five weeks?? :)
    I took 6-7 Narco a day (maybe you can try Narco) and wore two Fentynal pain patches for much longer than 5 weeks :)

    However, I remember when the pain patches ran out one time I thought I did not need them anymore..MISTAKE.

    I have no experience with you drug...but like others above ...maybe your doc will give you something else.

    Best,

    Tim
  • Ingrid K
    Ingrid K Member Posts: 813
    #18
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    Skiffin16 said:

    Thrice the Pleasure, Thrice the Fun...
    I usually copy my reply before sending...because they have a habit of getting lost in translation....never to be seen again.

    I must have copied my reply, then went to check the spelling on Hydrocodone. When I thought I pasted the correct spelling, I actually pasted the original reply twice....

    I usually copy my reply before sending...because they have a habit of getting lost in translation....never to be seen again.

    I must have copied my reply, then went to check the spelling on Hydrocodone. When I thought I pasted the correct spelling, I actually pasted the original reply twice....

    I usually copy my reply before sending...because they have a habit of getting lost in translation....never to be seen again.

    I must have copied my reply, then went to check the spelling on Hydrocodone. When I thought I pasted the correct spelling, I actually pasted the original reply twice....

    I tend to type faster than my fingers spell correctly, as you can tell...

    Also, my main home laptop computer is missing the keyboard cap for D. If I don't hit that key especially hard, it won't show the d...LOL. So now you'll know if you see some "D"'s missing...

    If you are seeing double or triple here...it must be your eyes.

    JG

    what was that ? what was that ? what was that ?
    I hate to break it to you, Skiff, but I think you have a new side effect -- seems like you stutter now, LOL
  • phrannie51
    phrannie51 Member Posts: 4,716
    #19
    Options
    I had to look up Dexamethasone....
    as it was never offered to me....Since it's a steroid, I don't blame you for wanting to quit taking it...and I have no idea is that's the cause of all the pain you're going thru...like it may be coicindental. I'd check in with Dr., and ask that first...then ask what they can do for you to make things better, without taking steroids.

    p

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