| | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | Hi folks, I'm back after struggling with some addiction problems post treatment. Working at a 12 step retreat in New Hampshire and looking forward to being back in touch with all of you. Limited however to an hour a day on line. Also... my teeth are losing their enamel. Some have lost most of it. Does anyone know of a procedure to replace a protective coating? Really really worried about long term dental problems so any advise would be greatly appreciated. I'm very happy to be back. You folks really saved my butt. thanks. Will
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 | Hi Will! Ive wondered what became of you. Glad to see you stop back to visit.
If you need any teeth pulled, make sure you do hyperbaric oxygen treatments (HBO) or you could have even bigger problems down the road. Hope things improve very soon for you. Best wishes!!!
Last edited by ChristineB; 12-06-2011 12:00 AM.
ChristineSCC 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  | | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Good luck with your recovery..we are all rooting for you to overcome your addiction issues and get back to LIFE!
Hopefully our resident dentists can make some suggestions regarding your dental issues.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | 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 | Hi there! You kicked cancer dude you can do this too... Give yourself a break... You've been through a lot. HAVES think you may have to have veneers put on. I've noticed a little gum recession but so far so good. Do talk to the dr. They really cook us so I can see myself having problems down the road too! Hugs ! Stay strong ! You can do it!
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: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi Will! Glad to see you back in the fold...but not so glad about the reason.
Veneers are great and can last much longer than anticipated (I've had some last for 13 years.) I don't know much about bonding, but I think it was mainly a tooth covering that wasn't as durable as a veneer. I wonder if a tooth-colored sealant (like what is used for kids to prevent cavities in molars) would work. I hope your dentist can give you some good options.
Last edited by Sandy177; 12-06-2011 12:50 AM.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Will. So glad to see you post. Have thought about you and wondered how you were. Congrats for taking control of your life and working the program! Sorry I don't have any advise for the dental issues. My husband seems to live in the dentist chair these days. Continued good health and STAY STRONG!!!
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | Thanks for all the support. It's great to hear from all of you. As far as the teath go....it's the damn dry mouth that has caused the enamel loss. My teath are still in great shape but I know it's only a matter of time before they start to decay without enamel. And the back ones hurt already. There rough like a pomus stone so... I'm 7 months out of TX. Anyone know when my dry mouth will improve. Anyone have any luck with Saligen? Thanks again folks. Strangely enough it's great to be back. I've been very fortunate. MW
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Will, welcome back. I hadn't seen your moniker for awhile and was hoping you were ok. Glad you've come through treatment and I know kicking an addiction can be a bitch.
I think the dry mouth thing is different for all of us. It took me the better part of a year before things started to improve. But they did improve and now over 2 years out I'd say the dryness is at least 50% better than it was right after RT.
I would say hit it with everything you can. Dunno about Saligen, but I do have gum with xylitol and xylitol candy (hard little candies in a tube called Fruit Sparx that I ordered online). I also use a xylitol spray called Spry Rain, which I also found online. None of that replaces saliva of course, but from what dentists tell me, my own and also my cousin who's a man of the tooth, xylitol is great for helping your teeth counteract the effects of bacteria.
You might also try gargling a few times a day with baking soda in warm water.
Keep us posted!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Welcome back Will, Good to see you post again and just love what you have called this thread as we are indeed a family. Good luck with the retreat to beat your addiction problem. It is great that you are getting help. Also best wishes in getting your dental problems sorted. Don�t be such a stranger to this family 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Hey there, Will. So good to hear from you. I have often wondered how treatment went and what you have been up to. Your posts were very inspiring to me. (Manuka honey was a good tip.) I think we went through treatment around the same time. My recovery was very slow. How was recovery for you? My life has (almost) returned to normal. Energy is back but my mouth is still quite compromised (lack of saliva, difficulty opening, swallowing). But I am grateful to be on the other side of things. So good to hear from you. -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.
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