Specific question re: mouth sores

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tootlemonde
tootlemonde Member Posts: 3
in Head and Neck Cancer #1
My wife is 6 mos. out from rad/chemo for squamous cell lodged in her tonsils which resulted in a tonsillectomy & lymphectomy neck dissection as well. She is doing OK ~ actually really well compared to my own experience ~ and just got a clear PET scan. One residual problem she has, however, is an ulceration on the right side of her tongue that just won't heal. This results in difficulty eating and talking.

Has anyone here found a 'magic bullet' that helped them with such wounds? So far she has tried salt water rinses (gagged her), Oragel & Triamcinolone Acetonide (ineffectual) and is now trying Glutamine powder at the suggestion of a homeopath (jury is still out, but it doesn't look promising).

The oncologist, after giving the usual "everyone heals differently" fall-back line, could only offer "triple swish", which was refused by our med plan. Those ingredients (nystatin, lidocaine, benadryl) look to be little more than a band-aid anyway, dealing with the effects rather than promoting much actual healing.

I am suggesting that she have the dentist make a tooth mold such as for fluoride treatments, since I found that to be very helpful to wear to bed in my own case as it 'keeps things in place' and would protect the tongue from aggrivation at night while she is sleeping. But she never listens to me.

Anyone have anything else that has helped?

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
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    No Info - Just Well Wishes
    tootlemonde,

    Have to say - your screen name caught my eye. Brought back memories of my father, when anxious for me to get something done, would tell me "tootdesweet".

    Your wife's doing really well compared to your experience? You are a survivor as well?

    I'm not much use on advice for the ulceration on your wife's tongue - I do recall hearing good things about manuka honey - perhaps number 16? Six months of continued suffering is harsh - hope you all find some relief.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
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    L-Glutamine Powder
    Heaping tsp. In water swish and swallow. I also add it to my smoothie every day.

    I buy mine at GNC or some health food stores carry it, or on line. Get the powder.


    GLUTAMINE


    ARTICLE ON BENEFITS OF GLUTAMINE


    GLUTAMINE

    ARTICLE ABOUT GLUTAMINE AND THE PREVENTION OF MUCOUSITIS IN BMT PATIENTS

    It worked for me. I can drink orange juice now. I had mouth sores on top of mouth sores during and after treatment. So bad that I didn't eat or drink by mouth for months. Five months not even drinks and 9 months no food. I was a mess.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
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    Pam M said:

    No Info - Just Well Wishes
    tootlemonde,

    Have to say - your screen name caught my eye. Brought back memories of my father, when anxious for me to get something done, would tell me "tootdesweet".

    Your wife's doing really well compared to your experience? You are a survivor as well?

    I'm not much use on advice for the ulceration on your wife's tongue - I do recall hearing good things about manuka honey - perhaps number 16? Six months of continued suffering is harsh - hope you all find some relief.

    Your screen name caught my
    Your screen name caught my eye too, because I took 7 years of French, about a million years ago. So, when I read it, I heard 'tout le monde' in my head. Literally 'all the world' but translation would be every body.

    I am thinking I need some ice cream, toute de suite. (immediately. Tootsweet) :)
  • Scambuster
    Scambuster Member Posts: 973
    #5
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    Mouth
    Toots,

    She would probably need a decent dose of the L Glutamine and as Sweets says, use the powder. It will not work immediately. You can take 3-4 heaped tables spoons a day of the stuff so dont be shy with LG.

    Also some the B vitamins (Multi or Mega B)and Zinc, Mg and Vit C All help with healing.

    Check with the NP on dosage.

    Scam
  • ratface
    ratface Member Posts: 1,337 Member
    #6
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    Scambuster said:

    Mouth
    Toots,

    She would probably need a decent dose of the L Glutamine and as Sweets says, use the powder. It will not work immediately. You can take 3-4 heaped tables spoons a day of the stuff so dont be shy with LG.

    Also some the B vitamins (Multi or Mega B)and Zinc, Mg and Vit C All help with healing.

    Check with the NP on dosage.

    Scam

    Providone Iodine 10% diluted
    pour a couple tablespoons in a water bottle. Fill with water, cap and shake. Now just swig it out of the bottle, swish and gargle, then spit it out. Iodine has been a powerful antiseptic forever. Taste like crap but it works.
  • DrMary
    DrMary Member Posts: 531 Member
    #7
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    Late mouth sores
    It was very disheartening to have a bad sore pop up months after treatment - Doug had a wicked one that showed up a few weeks after his neck dissection, which was done about 2 months after his radiation ended. The ENT couldn't even see it, but the radiation doctor was able to - it looked like a tear that happened when they pulled his tongue aside to scope his throat during the dissection (the tear was where his tongue was attached to his jaw on the right side - just about any kind of chewing, swallowing or even talking irritated it).

    We had a bottle of pure lidocaine from when my daughter had strep - he applied this before meals with a q-tip. Your med plan may or may not pay for it, but I don't recall it being expensive, and he only went through a few mL. He found that diluted hydrogen peroxide was the best rinse to help it heal - it took another 2-3 weeks but did heal. I did re-evaluate his diet, as he was eating more solid food and less Boost Plus, and so increased the amount of vitamin A, C and B-12 in his diet.

    We did not try L-Glutamine swish and swallow, but he was consuming quite a bit of it in milkshakes. Given that it can't hurt, is not expensive, and folks swear by it, I'd keep that up as well.
  • tootlemonde
    tootlemonde Member Posts: 3
    #8
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    DrMary said:

    Late mouth sores
    It was very disheartening to have a bad sore pop up months after treatment - Doug had a wicked one that showed up a few weeks after his neck dissection, which was done about 2 months after his radiation ended. The ENT couldn't even see it, but the radiation doctor was able to - it looked like a tear that happened when they pulled his tongue aside to scope his throat during the dissection (the tear was where his tongue was attached to his jaw on the right side - just about any kind of chewing, swallowing or even talking irritated it).

    We had a bottle of pure lidocaine from when my daughter had strep - he applied this before meals with a q-tip. Your med plan may or may not pay for it, but I don't recall it being expensive, and he only went through a few mL. He found that diluted hydrogen peroxide was the best rinse to help it heal - it took another 2-3 weeks but did heal. I did re-evaluate his diet, as he was eating more solid food and less Boost Plus, and so increased the amount of vitamin A, C and B-12 in his diet.

    We did not try L-Glutamine swish and swallow, but he was consuming quite a bit of it in milkshakes. Given that it can't hurt, is not expensive, and folks swear by it, I'd keep that up as well.

    Thanks for the replies.
    It's
    Thanks for the replies.

    It's nice that my username was actually recognized. I have used it from time to time on chat rooms with the idea that these posts go all over the world, but usually people reply to 'tootle'.... Nice that you understand the french roots, toots.

    Yeah, both my wife and I have both experienced the joys of SCC. I went thru my trial about 4 years ago with mine own being lodged in the lymphs. It was easier for my wife, I think, having had me go there before and for me to know something of what she would experience. Still no fun. She has had little of the viscous saliva effect which has been so vexing for me to this day, but does have trouble with 'dry' meals. Otherwise, she has made a rather remarkable recovery. But she is overall a much better patient than am I.

    I am glad to hear that the glucosimine is/was effective for several of you. I had my doubts and Wifey tends to try something for a couple weeks, then when instant gratification fails to appear, goes looking for an alternative. I will have her look these posts over and hopefully give the treatment a chance to work.

    Incidently (and for the benefit of those who might be facing the prospect), her tonsillectomy was a relative breeze. We were very concerned after hearing all the problems that people talked about as adults getting the procedure. In her case, it was quite simple and she delt easily with the after-effects (which were short-lived). Don't believe all the horror stories you might hear.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
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    tootlemonde said:

    Thanks for the replies.
    It's
    Thanks for the replies.

    It's nice that my username was actually recognized. I have used it from time to time on chat rooms with the idea that these posts go all over the world, but usually people reply to 'tootle'.... Nice that you understand the french roots, toots.

    Yeah, both my wife and I have both experienced the joys of SCC. I went thru my trial about 4 years ago with mine own being lodged in the lymphs. It was easier for my wife, I think, having had me go there before and for me to know something of what she would experience. Still no fun. She has had little of the viscous saliva effect which has been so vexing for me to this day, but does have trouble with 'dry' meals. Otherwise, she has made a rather remarkable recovery. But she is overall a much better patient than am I.

    I am glad to hear that the glucosimine is/was effective for several of you. I had my doubts and Wifey tends to try something for a couple weeks, then when instant gratification fails to appear, goes looking for an alternative. I will have her look these posts over and hopefully give the treatment a chance to work.

    Incidently (and for the benefit of those who might be facing the prospect), her tonsillectomy was a relative breeze. We were very concerned after hearing all the problems that people talked about as adults getting the procedure. In her case, it was quite simple and she delt easily with the after-effects (which were short-lived). Don't believe all the horror stories you might hear.

    Glad things have been easier for your wife.
    You want L-Glutamine, not glucosimine. Just want to make sure if she tries it, you get the right thing. I would think she would need to give it a month to judge if it's working. Gee, even with prescription drugs, you need to give some stuff time to work and make a difference. Tho, I can understand, since I am an extremely impatient person. Lol
  • ratface
    ratface Member Posts: 1,337 Member
    #10
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    sweetblood22 said:

    Glad things have been easier for your wife.
    You want L-Glutamine, not glucosimine. Just want to make sure if she tries it, you get the right thing. I would think she would need to give it a month to judge if it's working. Gee, even with prescription drugs, you need to give some stuff time to work and make a difference. Tho, I can understand, since I am an extremely impatient person. Lol

    Yeah, both my wife and I have both experienced the joys of SCC.
    Please don't let this unique circumstance go un-investigated as it could have great benefits for future couples. Do you attribute both your cancers to the HPV virus? I can somewhat empathize as my wife and I have actually gone to our respective oncologists at different hospitals on the same day, one in the morning and one in the afternoon. Her's is cervical dysplasia though. Damn shame we have oncologists as a matter of routine.
  • tootlemonde
    tootlemonde Member Posts: 3
    #11
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    ratface said:

    Yeah, both my wife and I have both experienced the joys of SCC.
    Please don't let this unique circumstance go un-investigated as it could have great benefits for future couples. Do you attribute both your cancers to the HPV virus? I can somewhat empathize as my wife and I have actually gone to our respective oncologists at different hospitals on the same day, one in the morning and one in the afternoon. Her's is cervical dysplasia though. Damn shame we have oncologists as a matter of routine.

    Nope, not HPV...
    ...cigarettes, we figure. Both my wife and I were smokers, although she did quit some 6 years before I got my diagnosis. No hx of HPV in either of us.

    And she is using L-Glutamine ~ I was going by memory when I wrote te above entry. (always a chancy thing).
  • tonyb
    tonyb Member Posts: 69
    #12
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    this is gonna sound wierd
    this is gonna sound wierd but.....
    the doctor told me to try camphophenic (spelling?)
    it tastes horrible and burns like the dickens when you first apply it,
    but it numbs the ulceration and helps healing just like their jingle claims.
    (STOP HURTING START HEALING WITH CAMPHOPHENIC.....)
    and yes it really really tastes horrible.......
    i am convinced that the left side of my tongue would still be an open wound,
    if not for this stuff. just dab it on with a cotton swab,wait 4 or 5 seconds for the burn to go away then the yuccky taste but it feels great and you can do this as many times a day as you need to. best of luck to you, Tonyb
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #13
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    tonyb said:

    this is gonna sound wierd
    this is gonna sound wierd but.....
    the doctor told me to try camphophenic (spelling?)
    it tastes horrible and burns like the dickens when you first apply it,
    but it numbs the ulceration and helps healing just like their jingle claims.
    (STOP HURTING START HEALING WITH CAMPHOPHENIC.....)
    and yes it really really tastes horrible.......
    i am convinced that the left side of my tongue would still be an open wound,
    if not for this stuff. just dab it on with a cotton swab,wait 4 or 5 seconds for the burn to go away then the yuccky taste but it feels great and you can do this as many times a day as you need to. best of luck to you, Tonyb

    Well...
    If it burns so bad, you can try using magic swizzle or magic mouthwash first, and then applying the campho-phenique.

    Is it this stuff?:

    CAMPHO-PHENIQUE
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #14
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    tonyb said:

    this is gonna sound wierd
    this is gonna sound wierd but.....
    the doctor told me to try camphophenic (spelling?)
    it tastes horrible and burns like the dickens when you first apply it,
    but it numbs the ulceration and helps healing just like their jingle claims.
    (STOP HURTING START HEALING WITH CAMPHOPHENIC.....)
    and yes it really really tastes horrible.......
    i am convinced that the left side of my tongue would still be an open wound,
    if not for this stuff. just dab it on with a cotton swab,wait 4 or 5 seconds for the burn to go away then the yuccky taste but it feels great and you can do this as many times a day as you need to. best of luck to you, Tonyb


  • tonyb
    tonyb Member Posts: 69
    #15
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    yep thats the stuff, tastes
    yep thats the stuff, tastes really really bad but it helps.
  • BJammin
    BJammin Member Posts: 5
    #16
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    tonyb said:

    yep thats the stuff, tastes
    yep thats the stuff, tastes really really bad but it helps.

    Thanks for the Mouth Sore Advice
    Thanks for all the ideas. I still have a tongue sore that flares up, and it's been 4 years after radiation treatment for throat cancer. I have dry mouth and my teeth have begun detiorating as well :(

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