| | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 64 | I just read a summary of a small study comparing this to Biotene (I assume, it wasn't specifically named). This had MUCH better results. Has anyone tried it?
Last edited by LeftyS7; 10-20-2012 08:25 AM.
Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | No, I havent tried this before. It may have been mentioned a while back. I hope to hear more from some of our members who have used this. Thanks for posting this, it may help lots of patients 
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | I tried them, didn't really care for the way they worked. May have been a personal issue (They attach to roof of mouth) but I didn't get too much added relief from them. I really thought they would be awesome at night when you really dry out and aren't as aware of it but it didn't seem to help me. Others on the board at that time was posting mixed reviews so as with everything it worked well for some and not so much for others. Doesn't hurt to give them a shot. Good Luck!
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Jun 2012 Posts: 11 Member | | Member
Joined: Jun 2012 Posts: 11 | I tried them but didn't really care for them either. My mouth has been dry for so long that they didn't seem to help much at all and they kind of make me gag. I always go back to the biotene and the oral balance. I wish they would come up with something better. I have so many issues with my teeth. I just finished getting another round of fillings and crowns and they last a little while and then they break. So frustrating. Does anyone have any helpful hints on the dental horrors. I really am so tired of it.
65f dx 7/95 scc poorly differentiated r post pharngeal Laser surg
7/96 reocur l post wall 8wks IMRT 5d/wk
freq check all clear ca
97 approx dx atypical mycobacteria lungs picc line many antibiotics still pos cultures
cough
dysphagia
dry mouth
many dental issues
osteoporosis many fxs
Poor appetite
| | | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 64 | My feelings, too. I just tried them. From reviews on Amazon and elsewhere I'd say that 60% of users are satisfied with them, 40% aren't. They worked, some, but not all night and no better than frequent uses of Biotene mist which is what I used before and since.
I'd say it's worth a try for anyone.
Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | I just tried these patches and liked them. The relief they offer lasts longer than Biotene gel. I got them online and need to get some more. Wish I could buy them locally.
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 2007 Posts: 10,507 Likes: 6 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: 6 | When buying online, Amazon is a great site to buy from. If you use the Amazon button OCF will get a 6% kickback from any purchase on that visit. Please pass this around to your friends and family especially with holiday shopping right around the corner.
The OCF home page listing all the support forums has a green Amazon banner on top. Click on it to take you to Amazon. OCF only gets the 6% IF YOU ENTER AMAZON EACH TIME THROUGH THE OCF LINK. Most people, once they get there the first time, bookmark that page (which will have the OCF Amazon unique code in the url address) and save it to their browser bar - you can rename it just Amazon once you have done that. Then if you use that bookmark to always go to Amazon, you will actually be entering through OCF's identifier without coming to the badge on the forum to enter. A simple one time way to help the foundation significantly without spending an extra cent. | | | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 64 | I just tried them again, using a different method: I put one on each side of my mouth between cheek and gum, the result was a thick, sticky, "saliva", more like phlegm, that was somewhat uncomfortable. I had to get up once to wash off my lips that were sticking together. However, I made it through the night, and beyond, with NO dry mouth so I think that it is definitely worth it.
There is a competitor product, Xylimelt patches, which I have ordered. I'll review and compare them once I've tried them.
Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Looking forward to Lefty's reviews. Biotene gel has worked best for me with the mouthwash, but it is not as effective as when I first started using it, so I think it would be good to have something to trade off with so as not to build up a tolerance.
I have the sticky saliva issue too from time to time, and keep a towel in bed to deal with that, as well as the ridiculous drool before the dry mouth hits. Honesty, like it wasn't bad enough getting cancer, what kind of lame ass side effects are these????
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | You crack me up!!! Everytime I read your posts I can just picture this spirited young woman!!
Love your gift of positivity...is that a word???
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 64 | I tried the XyliMelts Dry Mouth patches last night. They are similar in appearance to the OraMoist parches. It is recommended that they be applied to the inside of both sides of the mouth, NOT to the roof of the mouth as per OraMoist.
The product is a timed release vehicle for Xylitol, as is OraMoist, but, it only contains 500 mg of Xylitol, cellulose gum, vegetable gum, stearate of calcium/magnesium, mild, natural peppermint and nothing else. OraMoist contains 492 mg of Xylitol, Polyvinyl pyrrolidone, Carbomer Homopolymer Type A, Triglycerides, Lemon flavor, Citric Acid, Calcium Carbonate, Hydroxypropyl cellulose, Sodium chloride, Silicon Dioxide, Magnesium stearate, Annato, Glucose oxidase, Lysozyme, Lactoferrin. Apparently because it has less ingredients, the XyliMelts does not produce the same gluey saliva and, so, is more pleasant to use. The downside is that it doesn't seem to last quite as long and it doesn't glue one's teeth shut (which does help prevent breathing through one's mouth). User's have reported adding an additional patch during the night if the effect wears off.
The mint flavor did burn my mouth, somewhat, so I will try the flavorless version next time.
I do recommend that they be tried. I don't think that they are commonly available locally but are on line. I bought mine through Amazon.
Last edited by LeftyS7; 11-11-2012 05:12 PM.
Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Thanks Lefty, I will give it a go - my pillowcases may well owe you a debt of gratitude!
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2011 Posts: 126 | so, reading the posts about taping your mouth shut gave me an idea. When I was having difficult with lymphodema, my doctor recommended I try this head wrap (link to website below) to reduce nighttime swelling. Well, the lymphodema went away and I didn't use it much, but I had the idea a couple days ago to try using it to help keep my mouth shut and reduce dry mouth. I have used it the last couple nights, and have actually noticed a big difference! I haven't woken up once due to dry mouth in the last couple of nights (where I usually wake up 5-10 times a night), and my mouth wasn't even that dry when I woke up this morning! I was super excited. I have also recently started using ACT for dry mouth, so I am not sure if that has had an effect as well. either way, I feel I have found a solution to nighttime dry mouth, and thought I would share http://marenagroup.com/Default.aspx...cal-chin-strap-with-no-neck-support&
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
| | | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 64 | I've now been using Xylimelt patches for about two months. I really like them. Read my very detailed review of the Xylimet Mint flavored patches on Amazon under the four star reviews (by John Lefcourte). It explains how to experiment with them for optimal usage.
Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
