| | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 |
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | Stily, hey mate, if you're out there, I gave a copy of the fluoride ingredients link you posted to my Dad's Rad and his Pain Mgmt NP today, sort of got the raised eyebrow but as they read it, got "hmmm, this is new to me, sounds good let's check it out." They asked to make a copy so they could run it past their dental oncologist. They are now sure that the bulk of his mouth soreness was from the fluoride, not rads, as his gums are now healing. It was a MESS. His Rad said to hold off on the dental trays until his final week of treatment (3 weeks) and that studies show the real benefit of fluoride are from post treatment lifetime use and he didn't want him to go through that pain again. Will keep you posted on how this turns out, I sense I rocked the boat again (with a smile of course) but his mouth was ridiculous and my guess is that they just script "brand X" fluoride to everyone for dental trays. Also going to run it by my dentist for his thoughts.
Last edited by Caco; 08-23-2011 02:19 PM.
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I had the same problem with the flouride it can be very irritating. I noticed after using it - that my hot would swell as well! I didn't use it until I was done! They do have different strengths!
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: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Very cool. I guess I got lucky. I hope the pH neutral fluoride gel turns out to help people out. I sure know the non-pH neutral stuff burned like a so-and-so when I first had to use it (because I ran out of the pcXX stuff.
-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.
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