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#118765 06-30-2010 10:41 AM
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Stily1 Offline OP
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Hello,
This may seem a minor issue all things considered, but I wanted to post up in case anyone has some advice. I've had treatment for tonsillar carcinoma with metastases to my right lymph node in my neck. My treatment was radiation (33 sessions) with 3 rounds of chemo (Cisplatin) only. My treatments ended about two months ago. I've had no surgery.

As a result of the radiation, my salivary glands have been inhibited and my mouth is dry; this is a common side effect of this treatment.

In my case, my tongue is dramatically coated, I believe as a result of the dry mouth. I've tried brushing it, scraping it, and (based on a web search) coating it in salt. These approaches have sort of helped, but the coating comes back.

Has anyone else dealt with this particular set of circumstances? Does anyone have a suggestion for dealing with a heavily coated tongue in a dry, post-radiation mouth?

Thank you,
-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #118768 06-30-2010 11:03 AM
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Hi Seth,
I finished IMRT radiation treatments for tongue cancer one month ago today and did not have problems with dry mouth. I did have some trouble with thrush and was treated with oral antibiotics. You may want to ask your RO to write you a scrip just in case.

Barb


Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!

"Get outside every day. Miracles are waiting everywhere."
beeboppin5 #118812 06-30-2010 08:39 PM
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Actually if you did have a Candida infection that is a fungal infection, not bacterial, so you were treated with antifungals, not antibacterials. Probably the most common one which is Diflucan, though there are others. Not being critical, just correcting things incase a future reader follows this thread.

As to the original question if you can scrape off that white/tan coating with a fingernail and it is kind of red sore underneath, that is likely Candida albicans. Please point it out to your doctors. The treatment takes about a week of pills, and sometimes a mouth rinse. Please have someone take a look at this, when it gets out of hand for too long it is really hard to turn around.

The dry mouth is likely going to be with you for a long time. I use the Biotene products, toothpaste, mouth wash, gum etc. available from everyone from WalMart to Walgrens. Some like others. But you need to also address this since it can lead to periodontal issues, and you don't want to come through all this just to have rampant gum disease at the end of things. 12 years after the fact, a water bottle is as natural a part of my hand as a watch or a wedding band.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #118819 07-01-2010 05:10 AM
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I had thrush twice post Tx and had to take Diflucan. It was pretty painful at times but the meds takes care of it.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #118829 07-01-2010 08:48 AM
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I found my oncology dentist to be more familiar with the coated tongue issues than my CCC team but that's why they recommended him to me. I've used diflucan pills, nizoral rinses as well as Mycelex (clotrimazole) troches for this recurrent problem and like the Mycelex the best so far. This is not really a DIY issue, so see a dentist or doctor and get a script.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #118832 07-01-2010 09:01 AM
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My dental hygenist realized it was Thrush after the oncologist tried to give me morphine for the pain. Diflucan cleared it up in several days. There is a study now (I do not have the link) researching accupuncture to increase saliva after radiation. You may search the news articles on this site (it's were I read about it). Accupuncture worked very well for me and re leaved my dry mouth immediately. I'm not a salesman but I am a believer in whatever works for you. Best of luck.
mark


11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
Charm2017 #118833 07-01-2010 09:11 AM
Joined: Jun 2010
Posts: 153
Stily1 Offline OP
"OCF Canuck, across the pond"
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Posts: 153
Thanks everybody. Hm, I had my OC look at my tongue when it first became dramatically coated and he did not think it was thrush. It's only on the surface of my tongue; nowhere else in my mouth, and doesn't seem to be progressing in any way. I have some canadian antifungal lozenges called Dequadin (sp?) that I think I'll try. But, I think it's just a badly coated tongue?

My dentist sold me a large bottle of xylitol-sweetened mints (xylitol doesn't promote cavities), and these have turned out to be fantastic, helping wet my mouth and throat while I'm out and about. But yes, travelling with a water bottle has become part of life.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #118865 07-01-2010 07:23 PM
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I get a coated tongue but it sure isn't white but more the color of dried blood. I have been getting it for close to 3 yrs and it hasn't improved a bit yet. Hurts like it looks too. Like hell. I am now going thru a stage where my mouth id arrid dry and then later it can become hurricane wet. But as they say, Hey man I am alive and breathing with a TOOTHLESS SMILE.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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