| | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | OP  "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Hi,
I'm 4 months post TX with radiation and Cisplatin (no surgery). I have the typical dry-mouth side effect from radiation of my salivary glands. For several months now I've had a heavily coated tongue. I'm comfortable that it's not thrush.
Anyone else have this problem? Anyone out there found a way to clear this up? I have a good tongue scraper and it does help, but only in a "constant maintenance" sort of way.
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.
| | | | | Joined: May 2010 Posts: 37 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2010 Posts: 37 | Hi Seth!
My tongue was the same way for quite a while. I am now 6 month's post treatment & still rinse my mouth out constantly with the baking soda, salt water soloution. Plus the tongue scraper really helped. It is much better now not as terrible looking. So it will get better. I also use Biotene mouth wash & that seem's to help also.
Stage 1V scc of toncil 12/1/09
Peg in 01/18/10
35 rads 3 cisplatin
tx ended 03/02/10
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I'm 4 years out and my tongue is still somewhat coated despite me brushing it constantly. I also had 2 bouts with thrush (not fun at all) so I guess this is the way it's going to be. I just don't stick my tongue out at people as much anymore. lol
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.
| | | | | Joined: May 2010 Posts: 48 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2010 Posts: 48 | Yeah, I'm a little over 2 months out and I have the same issues. I think it may have something to do with the Ensure; but not sure. I am trying to increase the amount of yogurt that I eat since it's suppose to help with the natural flora of the mouth! 
Charles
HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.
Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Is the coating any particular color? I have noticed some interesting things based on going to bed after eating sweets. The tongue is usually coated brownish and think towards the back. I pretty much scrape it daily for the past 7 years anyway. If I drink a Coke, thrush by morning always. It is sometimes yellowish and sometimes light brownish but always has the smell of dirty dishrag. I have tried many probiotics and the standard diflucan, nystatin, etc., but it always comes back. Just another thing to slot in for another day in paradise.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | An update. One notion is that this fuzzy tongue is a fungal issue (not thrush, however).
My UK oncologist suggested sucking on a pineapple juice ice cube every day for 4-6 weeks. I tried this, and it didn't make a noticeable difference in my case (but I came to rather enjoy the ice cubes!).
My BC cancer dentist suggested clotrimazole pouches, but these don't exist in the UK for oral use.
My UK oncologist then prescribed amphiterazin (sp?) lozenges, but it turns out they stopped manufacturing those two years ago!
In researching one of these medicines, I found a reference that one is very similar to nystatin, and I happen to have two bottles of nystatin solution, which was suggested by my Canadian GP but I never tried consistently.
So! I've just started using the nystatin solution 3-4 times a day, and will report back in a couple of weeks.
-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.
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Seth, you are singing my song. I am 2 1/2 months post treatment, and I have had a coated tongue for about 6-7 weeks. My ENT said it was dead skin and to brush or scrape it and it would go away on three weeks. Well, it's been three weeks and it is still coated. I continue to scrape and just try to deal. Like everything else with this cancer, the gross factor is extreme. -Michelle
Last edited by Michelle Ann; 06-05-2011 10:45 AM.
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Hi Michelle,
Well, I'll suggest that as side-effects of this go, this is not such a big deal, but yes, it's annoying (and unsightly). I'm more than a year out, so I can only blame my dry-ish mouth, and my dry mouth is not that extreme, but it is a change (from pre-treatment). I'm not yet sure if the nystatin will help. I will try to let you know!
-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.
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | An update. So I'm now 18 months post treatment, and it seems my furry-tongue has started to improve somewhat. This *may* have coincided with a recent dental cleaning, but that may only be coincidental, too.
Otherwise doing well, continuing to get more fit, my weight is just about back up to what it was at my third and final chemo, and no, weight gain isn't a goal, per se.
Moderate dry mouth is just something to deal with, and xylitol mints are my saviour. Neck muscle cramping is also just one of those things and isn't a big problem.
Pretty much I feel great!
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.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Have tried using a waterpik? They have a tongue scraper which helps! Also try manuka honey 3-4x a day for a few days... That may help!! (it's anti- inflammatory, anti- infectious - and anti bacterial - it's a natural hydrogen peroxide for your mouth! ) Good luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | I had that. I thought it was thrush but the thrush meds did not help. Then my ENT said that it was burnt skin on my tongue and that I should scrape it, which I did, but time was the only thing that seemed to clear it up. I am 6 months post TX. I think my tongue cleared up last month or the month before. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Hi Michelle, Apparently "black furry tongue" is a pretty common condition, and for most people it's temporary. It's the papillae of the tongue growing longer than they should. http://en.wikipedia.org/wiki/Black_hairy_tongueNobody seems to have a solution, and for me, following my treatment, I had this for, well, about 1.5 years! But, recently, it seems to have gone as mysteriously as it came. This change, or my noticing of it, seems to have coincided with a dental cleaning, but I wouldn't go so far as to claim that the two are linked. Maybe? The good news is, it seems to go away, eventually. -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.
| | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | I won't say this is for every single one of you, but chances are the coated tongue is bacterial overgrowth that isn't removed naturally by saliva (we know why). This summer my tongue was coated like that, and my ENT's PA, who sees me first at my check-ups, and my ENT oncologist, said, bacteria, get rid of it by using baking soda, tongue scraper. My husband, who is a GP dentist, says he sees a lot of it in older people whose salivary function is not so great. He always says, and it makes me feel better, "I've seen worse in people who have not had radiation."
Anyway, what I do is mix up some baking soda and water, get a gauze square wet with it, and use that on my tongue. I can get rid of it everytime. Just have to repeat the process if not daily every other day, I guess. I like using the gauze because I feel like it is gentler than the tongue scraper, and I have more control. What I don't like is, as you well know, baking soda dries the mucosa.
For what it's worth, and I think someone else mentioned the baking soda.
Best,
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Time for an update. For whatever reason(s) my "black furry tongue" problem has mostly resolved now, about 20 months since the end of my primary treatment. Perhaps my salivary function has returned enough? I can't say for certain.
Otherwise I'm doing quite well. Getting more and more fit, working, travelling. Dry mouth is a minor nuisance. Neck muscle cramping is.....a minor nuisance. Otherwise all systems are "go".
Cheers,
-Seth in London
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.
| | |
| Forums23 Topics18,247 Posts197,132 Members13,319 | | Most Online1,788
Jan 23rd, 2025 | | |
|
