| | 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 | kme,
You really need to talk to all your docs and get a consensus about whether or not you should continue to use the fluoride since it's irritating your tongue.
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 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | kme,
David is right -- talk to your doctors and ask if it's okay to stop for a while. I, too, am in the middle of radiation treatment (16 done, 14 to go) and the fluoride trays sting horribly on my top teeth. My prosthodontist told me not to worry about stopping if it is so irritating, and to resume when it doesn't hurt so much (presumably after radiation is over). But ask your doctors first.
According to my prosthodontist, the weeks following radiation are the crucial ones to really start using the fluoride trays.
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | | Joined: Jan 2009 Posts: 11 Member | | Member
Joined: Jan 2009 Posts: 11 | I do have a dentist appointment today so I'll check on that. I didn't use flouride all through treatment because everything was SO sensitive...I have horrible confluent mucositis. My mouth has really taken a while to heal. So my doctors urged me to start using them again despite the burning. My RO scared me that my teeth would fall out. Things aren't looking so good here. Looks like i have some kind of recurrence on the opposite side, glands though, and dermal mets may be likely. This is horrible. I just had CT scan, PET scan, and MRI the past two days so looks like I'll be hearing soon what's next. Thank you for the advice on the flouride though...I'll definitely ask very directly to my dentist today. And then my doctors I'll be seeing this week as well.
Thank you!
Kristen
26 yo Med student: 9/26/08- biopsy diagnose SCC on rt side of tongue
10/08/08- partial glossectomy and rt sided neck dissection removing 42 nodes, one of which positive for SCC
11/10/08- 7 wks of 33x IMRT, wkly cisplatin and wkly erbitux tx
12/26/08- last day of radiation.
8/5/09- uh oh...
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Kristen,
Wanted to let you know, I'll be holding my breath with you. My prayers are with you.
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Jan 2009 Posts: 11 Member | | Member
Joined: Jan 2009 Posts: 11 | Thank you Amy. Well, turns out I have a lot of cancer going on. All under left mandible, into mandible, floor of mouth, and some dermal stuff too. I have a bunch of oncology appointments at Mass General and Dana Farber on Tuesday and Wednesday of this week. Weird how this happened. I'd already had multiple CT scans that never picked this up! It was FNA biopsy that found it, and MRI and PET that confirmed it. I'm ready to fight the hell out of this cancer though!
26 yo Med student: 9/26/08- biopsy diagnose SCC on rt side of tongue
10/08/08- partial glossectomy and rt sided neck dissection removing 42 nodes, one of which positive for SCC
11/10/08- 7 wks of 33x IMRT, wkly cisplatin and wkly erbitux tx
12/26/08- last day of radiation.
8/5/09- uh oh...
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | I'm so sorry you are faced with this again. My thoughts and prayers are with you.
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: May 2009 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 113 | I got brush on flouride! Brush it on let it sit for a min and spit it out! I find that it better coats my teeth as well! Might want to look into that as well. Those trays irritate me...waste of $180
30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Kristin,
I'm so sorry you are faced with a recurrence. You are soooo young! I wish you well with your appointments this week. Please keep us posted on the results. Sending good thoughts your way.
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Kristin, Im sorry you have to go thru this again. Please keep us posted with updates on what your docs say. wishing you the best of luck with everything.
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: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | hisnibs,
I may have missed it in your posts but, what exactly is the product you are putting in the trays?
I may be able to offer some advice if you could be detailed in the product.
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
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