Okay ..have to ask

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Tim6003
Tim6003 Member Posts: 1,514 Member
in Head and Neck Cancer #1
You know those dinner rolls or biscuits you buy at a bakery and they still have that "powdery white residue" on them you can blow or brush off? Well that's what on the back of my tongue, very back. My tongue, throat or mouth in general does not hurt...but I can feel / see a couple of very small bumps on the back of my tongue if i stick it way out...

The white stuff comes and goes??? When I called my onc nurse she said "probably not thrush bc it will get worse" she also said "this far out thrush is not common" ..she also said "and don't take this the wrong way but maybe you should stop looking in your mouth so much" ...okay, I can read between the lines and can tell I annoyed them the last few days with my calls ..but I did have white spots in the back of my throat and I did have what looked like long white fibers, yes fibers, like hair strings, going across the back of my throat??? Good grief, I don't want to be annoying ..but really!!! :)

I'm pretty sure the bumps on the tongue were not there yesterday ...so I think it is just mouth stuff going on ...just feel bad I am bothering my onc team, but just tyring to see what's up ...so I am coming to you guys.

I have been working 10 hours days lately getting ready for July 4th ...and I don't think I am drinking as much as I should.....actually I'm sure of it.

Thanks guys!

Tim

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    #2
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    Sorry
    I was glad that my rad doc gave me refills on meds. I had thrush throughout radiation and I believe a few more times while I recovered. 1 year later, neck dissection, being released doctor thought canker sore--2 days later, full blown thrush. Are you soaking your toothbrush in something daily (I used listerine and then rinsed very well) do you have any meds that are inhalers? I used Advair daily, clean the mouthpiece with alchohol on a cotton ball. I drink with a straw, throw straw away daily. Glasses go in the dishwasher. I know that I am neurotic, but I don't like the stuff either. I wouldn't even kiss my hubby when I have thrush. You have a lot of kids, my sister calls her grandson the germ (lovingly!) have you checked their mouths. If you don't look, who will. Sorry, the nurse isn't living with this. You read the book, My Voice, I ordered it and checked out the website, a lot of information--one about our mouth flora, I just typed in My Voice in the search engine. Goog luck in clearing it up. You are your only advocate. I had it once pre-c and the doctors didn't know what it was, took 2 months and then I couldn't stand it, took 2 go rounds with meds. I know what it is and so do you, no need to suffer. Maybe your doctor can give you refills on prescription so you can start med as soon as you feel it coming on.
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    Just hello
    Hi Tim,

    At first I thought you were going to share with me how to enjoy the dinner rolls I use to love, but it wasn’t to be. Instead the onc nurse didn’t give you the stink eye but she did give you the crazy eye. I am not going to be any help with your issue, but you know there are no bad questions here. I always wonder, since we had similar treatments, if your present issues are my future issues? Anyway, DO DRINK MORE WATER, you want to stay freshly hydrated.

    Wish you the best,

    Matt
  • hwt
    hwt Member Posts: 2,328 Member
    #4
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    Disappointing that an ONC
    Disappointing that an ONC nurse would take that approach. Be persistent!
    I would think no pain was a good sign, however, don't chance it. I think this is my 3rd bout of thrush and my tongue burned like crazy before I got the meds started. Too much at risk, follow-up!
  • katenorwood
    katenorwood Member Posts: 1,912
    #5
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    .bother me....how dare you...
    Tim,
    I'm sorry but don't let your schedule or a crabby nurse get in the way of your health issues. For heavens sakes...you've come so far, don't back peddle now. If this has been an on going issue for awhile, get in and have it checked out ! Sorry wish I could help more ! Have a great 4th, and feel better soon ! Katie
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #6
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    katenorwood said:

    .bother me....how dare you...
    Tim,
    I'm sorry but don't let your schedule or a crabby nurse get in the way of your health issues. For heavens sakes...you've come so far, don't back peddle now. If this has been an on going issue for awhile, get in and have it checked out ! Sorry wish I could help more ! Have a great 4th, and feel better soon ! Katie

    Hey thanks guys
    I appreciate the feedback...hopefully more will chime in ....I just had a scope June 6th (by my onc and my ENT at separate locations ...so I am not thinking anything worse (though you all know it's always in the back of our head) ....the tongue bumps I have had come and go before ..seems related to the dry mouth ..and obviously if they were cancerous I would think they would not come and go.. :)

    But if not thrush and not the worse case scenario ...then I just figure it is "typical mouth stuff" that comes with what we have been through ...and I am only 6 months out from my last rad ...and I have NOT been drinking like I should for sure ...

    I keep my same water bottle and refill it all the time and I don't think I sterilize as I should ...maybe I will just start throwing it out daily and getting a new one.

    Thanks again.

    Tim
  • KTeacher
    KTeacher Member Posts: 1,103
    #7
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    Tim6003 said:

    Hey thanks guys
    I appreciate the feedback...hopefully more will chime in ....I just had a scope June 6th (by my onc and my ENT at separate locations ...so I am not thinking anything worse (though you all know it's always in the back of our head) ....the tongue bumps I have had come and go before ..seems related to the dry mouth ..and obviously if they were cancerous I would think they would not come and go.. :)

    But if not thrush and not the worse case scenario ...then I just figure it is "typical mouth stuff" that comes with what we have been through ...and I am only 6 months out from my last rad ...and I have NOT been drinking like I should for sure ...

    I keep my same water bottle and refill it all the time and I don't think I sterilize as I should ...maybe I will just start throwing it out daily and getting a new one.

    Thanks again.

    Tim

    Good idea
    Good idea about the bottle Tim, and don't share it with anyone, especially not that cute 2 year old. We have 'sippy' cups available for our grandson's, they just share at home (yuck). I have become very selfish with my water bottle.
  • Pam M
    Pam M Member Posts: 2,196
    #8
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    There I Go Again . . .
    Magic Google, WebMD says: Oral lichen planus. If you have a network of raised white lines on your tongue that has a lace-like appearance, you may be suffering from oral lichen planus. Doctors are often unable to determine the cause of this condition, which often resolves on its own. Practicing proper dental hygiene, avoiding tobacco, and limiting your consumption of foods that cause irritation to your mouth may helpful.

    LOVE IT - "limiting your consumption of foods that cause irritation to your mouth" - good luck.

    LiveStrong is not fearful in the face of white bumps on tongue, so that's a good sign.

    I, too, think it's irritating when med pros poo-poo our concerns. Hope it's a non-issue soon.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #9
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    Pam M said:

    There I Go Again . . .
    Magic Google, WebMD says: Oral lichen planus. If you have a network of raised white lines on your tongue that has a lace-like appearance, you may be suffering from oral lichen planus. Doctors are often unable to determine the cause of this condition, which often resolves on its own. Practicing proper dental hygiene, avoiding tobacco, and limiting your consumption of foods that cause irritation to your mouth may helpful.

    LOVE IT - "limiting your consumption of foods that cause irritation to your mouth" - good luck.

    LiveStrong is not fearful in the face of white bumps on tongue, so that's a good sign.

    I, too, think it's irritating when med pros poo-poo our concerns. Hope it's a non-issue soon.

    Pam...too funny !!
    Thanks Pam and all the others who responded...

    By the way ...saw the Oncologist yesterday and all looked good to him....not thrush but nothing serious either :)

    Oral Lichen Planus ----sounds like a newly galaxy or something...LOL :):):)


    Tim

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