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#54207 12-27-2003 11:34 AM
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minniea Offline OP
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Hello everyone,
Have any of you had spells of losing taste even after your taste seemed to come back?? I was tasting food quite well a couple weeks ago, but this week my mouth has been more sore then usual and my taste is just not as good. I attributed the soreness to me being adventurous and trying lots of new foods, but that wouldn't explain the loss of taste. Any suggestions? I've also noticed that there seems to be a milky kind of coating on my gums when I get up in the morning and if I don't eat for an extended amount of time. It scared the you know what out of me until I brushed it off with my tooth brush. Thanks for any help with this.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#54208 12-27-2003 12:01 PM
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Hi Minnie, My taste seems to come and go. Usually disappears altogether after a couple of mouthfulls but I press on. My dentist has stressed the need for me to brush my tongue and roof of mouth to remove bacteria and debris. Lack of saliva is the problem. I was given a tongue scraper also. I continue to use the mouthwash 1 teaspoon seasalt, 1 teaspoon bicarbonate in 500 mls boiled water to keep my mouth and throat clean. Helen


RHTonsil SCC Stage IV tx completed May 03
#54209 12-27-2003 12:32 PM
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I too had taste dulling and a mild burning and almost itching sensation. EVERY time it went away after a Nystatin anti-fungal anti-yeast swish. Your symptoms sound very similar especially the "milky coating".

I have mentioned this so many times that everybody is going to be tired of me typing this again but: My Doctors failed to identify the source of the problem because the yeasts didn't show up in the usual visable way. I finally was able to convince my General Practicioner to prescribe something (mostly because he accepted that it wouldn't hurt to try it) and guess what ALL the symptoms went away after about three days of the swish. I now keep a bottle in my kit of tricks because I have had occasions where the symptoms have come back. The number of times have become less and less over time.

I am fairly convinced that many of us continue to suffer needlessly from low grade yeast problems.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#54210 12-27-2003 02:37 PM
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minniea Offline OP
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I think you're right Mark, I have mentioned thrush to my doctor before and he always says that my tongue doesn't have a white coating, usual signs, etc. I went to my family practice today, the urgent care center that is part of their practice, for this stubborn UTI I have been battling for two weeks now. I should have mentioned it all to him, maybe I could have talked him into some nystatin. I'll try him again tomorrow.
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#54211 12-27-2003 03:08 PM
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And don't forget that the antibiotics you may be taking (just guessing) will also affect (kill) the good bacteria that keep the yeasts in check. I recommend lots of live culture yogurt every day. Just tell the doc he/she has a choice of a complex culture to indentify what is going on in your mouth or the easy way; try the nystatin! Also I just found out that the Nystatin swish may be mixed with a sugar base (so kids will take it) This mix should be avoided if you have limited salivia and tends to feed the very creatures you are trying to eliminate!

Go getum! laugh


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#54212 12-27-2003 03:09 PM
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And don't forget that the antibiotics you may be taking (just guessing) will also affect (kill) the good bacteria that keep the yeasts in check. I recommend lots of live culture yogurt every day.

Just tell the doc he/she has a choice of a complex culture test to indentify what is going on in your mouth or the easy way; try the nystatin! Also I just found out that the Nystatin swish may be mixed with a sugar base (so kids will take it) This mix should be avoided if you have limited salivia and tends to feed the very creatures you are trying to eliminate!

Go getum! laugh


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#54213 12-28-2003 04:58 PM
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I'll chime in on the guess that you may be dealing with thrush. Like Mark, my thrush didn't look like it was supposed to so no one caught it until I hit an osteopath on duty in the walk-in clinic. Nobody else, not the radiation oncologist or the ENT, figured it out; they just counselled me to be patient about my throat healing. After the osteopath prescribed nystatin, in one week I went from struggling with Ensure and soup to eating a McDonald's cheeseburger (with lots of water, of course).

#54214 12-28-2003 05:41 PM
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minniea Offline OP
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This morning my tongue was totally white but after a good brushing looked normal again. This has happened to me off and on since radiation. I think if my doc saw my tongue like it was this AM he would understand what I am talking about. In his defense, he doesn't see my tongue when it looks like that. But, I am going to call in the morning and be a bit more firm about it, there can be no harm in trying the Nystatin mouth rinse. Thanks to all for the answers............keep on keeping on Mark where the thrush is concerned, I think you're on to something.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.

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