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Joined: Dec 2012
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ashler Offline OP
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Good evening,

I am writing for advice because this problem is really starting to worrying me.

I am a male, 35, heterosexual, non smoker, non drinker.

I have a strange problem in my tongue since June (about six months now). I have the following symptoms:

- White tongue
- Irritated taste buds (sometimes painful, like right now!)
- Hypersalivation
- Teeth marks in the border

I think the white tongue is product of the excessive saliva. My saliva is white and foamy.

You can see pictures of my tongue here:

Tongue left side
http://img825.imageshack.us/img825/4278/tongueside1.jpg

Tongue front
http://imageshack.us/a/img687/6173/tonguefront.jpg

Tongue another side
http://s17.postimage.org/wc1aoxdt9/lengua4.jpg

Tongue border side
http://s17.postimage.org/lqctz6i3x/lengua3.jpg

Tastebuds are sore specially if I talk too much (due the friction of my tongue and teeths). Sometimes my tastebuds are sore because I think they are "broken" (I don't know how to say: like if I click on them with a nail to pop them up)

I have been tested for several things. Tested 5 times for HIV (Negative) out to 9 months from last sexual exposure with 4th generation Elisa.

Tested also for Hep B, Hep C, Syphilis, etc. (Negative). Tested positive for Herpes 1/2 (reinfection?), also tested positive for CMV, EBV, Hep A and HPV-16 (being in treatment now with ISOPRINOSINE).My dermatologist thought to irritated tastebuds could be due HPV, but the treatment does not do anything.

Tested positive for yeast (oral swab) in June. Two tests done around September, and another in October were negative yeast.

These strange symptoms in my tongue ocurred about 4 months after I had a sexual encounter with a girl. I am not sure if my tongue problems are related to that.

Does this looks like a virus? Does it looks like a geographic tongue? Have you ever seen a case like this? Do I need a biopsy? does this looks like cancer?

Your advice will be greaty appreciated. My quality of life has decreased a lot because of this issue.

Thank you in advance.

Last edited by ashler; 12-18-2012 04:06 PM.
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Have you been to an ENT?

Where did they biopsy to find HPV16?


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.
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ashler Offline OP
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Hello David (I am David, too smile

They did not do a biopsy to find HPV-16, they just did an oral swab to find it.

I was to an ENT who didn't find anything pathological, the same was said by two different dentists (?). But the photos and symptoms don't lie. At the moment of writing this, the tastebuds at the front are sore/burning frown

I wouldn't worry much, if it was not for the fact that I am with this since past June - it's December now!

I have an appointment with an immunologist tomorrow, we will see what she says.

I am a little bit lost because I have not find almost anyone with similar symptoms on the Web.

Thanks for your time.

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"OCF Canuck"
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Sounds like thrush.... Nystatin may help. I would have it checked again.


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
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Welcome to OCF. I hope your symptoms turn out to be nothing serious!

Not all ENTs specialize in the same things. Was the ENT experienced with oral cancer or were they more of a specialist for putting tubes in childrens ears? I would suggest seeking out another ENT, one who is more of an oral cancer specialist.

Dentists unfortunately arent always up to date with all the sores a person can have inside their mouth. Many dentists pay more attention only to the teeth and ignore anything else in a persons mouth.

Any sore someone has in their mouth for over 2 weeks should be checked by a professional. Its not possible to diagnose over the internet. Photos cant be checked with a biopsy. Thats what I would suggest, a biopsy which is no big deal. You may be sore for a couple days but by the time the results come back you will be ok. Waiting for a week to get the results can seem like its taking forever.

The white coating and yeast diagnosis sound to me like thrush. Has any of the professionals put you on anything for thrush? If so you may need another round. Plus if it would be thrush, you would want to change everything you have in contact with your mouth. That includes a new toothbrush, cup or glass you drink out of in the bathroom, etc. Even get rid of the mouthwash container if you put the bottle on your mouth. When I had thrush I would be fanatical about changing everything even my sheets.

Best wishes!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Where are you being seen?

I am not aware of any oral test for HPV other than a biopsy of cells.


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.
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Did you see an infectious disease doctor? You have a few things going on with the herpes, Cytomegalovirus, Ebstein Barr virus, Hepatis A, and HPV-16. Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2012
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ashler Offline OP
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thanks a lot for your answers and advice.

about your questions:

1) CMV, Herpes, EBV are viruses presents in most of the population. if I didn't have these tongue concerns, I probably would have never found out about them

2) I tested positive for yeast in June, was given fluconazole and started a candida diet. no changes. In September I went with a dermatologist and she tested me for yeast in the tongue. Test was negative. The test was repeated a month after, and it was negative again. So looks like oral thrush has been rule out the picture. Of course, I can repeat the test again.

3) HPV-16 is something I would like to take a look again. About the biopsy I have some questions: how long does it takes? do they 'sedate' my tongue?

Today I was with an immunologist who seemed not too concerned, but as I said, the problems are very real.

I have never had health problems in my life. I don't smoke, I don't drink, so I just don't understand it.

The closest case I have came across is a 10 years old girl. She seems to have similar symptoms as me:

http://www.netwellness.org/question.cfm/68512.htm

I will keep you updated.

Thanks again.


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HPV is a disease that there is still much to be learned about. It is something that many of the population can pick up over the course of their life. While most healthy individuals can clear the HPV, in a very few it will go on to create other health issues such as oral cancer, anal cancer, cervical cancer, genital warts, etc. This is a very small percentage of patients who get HPV that will go on to develop these diseases.

A biopsy can be done 3 ways. First they can knock you completely out to take a tiny piece of tissue. Next is a local where just that area is numbed. The 3rd way is to just take a small snip without anything to numb you at all. I have had biopsies all 3 ways and actually prefer the 3rd method. Its the quickest and with one little snip its over. Sure it hurts for a couple minutes but its not a big deal. You will want to consider how much tissue and how deep the doctor will go on which method will work for your situation.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2012
Posts: 4
ashler Offline OP
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Posts: 4
hi everyone,

i didnt post here for some time now.

i finally found an oral patologist. she told me we could do again an oral swab or we can go directly to the biopsy. it has been about 10 months now of these strange irritated tastebuds and sore tongue in that part, that's not normal. not to mention the white layer on the tongue.

so last week i went to see her, and ask her to do the biopsy on the area with the irritated tastebuds, but she was more concerned with something under my tongue. she told me "I don't like this". then she asked me if I wanted her to take a biopsy from that too. i told her, yes, let's do altogether.

my results will come out this tuesday. I'll keep you guys updated.

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The white layer could be thrush which needs to be treated with medication like nystatin.

Best wishes with your biobsy!!! I hope you do not join our recurrence club.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Good luck Tuesday


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
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Yes I was wondering did you ever find out what was wrong from the biopsy

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This member has not been back since April 14, 2013. I would have to assume they have had a non cancerous diagnosis or they would have come back. If they had been diagnosed with OC, Im sure they would have had many other questions and been still here asking them.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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