| | Joined: May 2016 Posts: 7 Member |  Member
Joined: May 2016 Posts: 7 |
03/02/16 surgery to remove malignant tumor in soft palate
05/09/16 began 30 treatments RAD (no chemo)
05/16/16 loss of taste and dry mouth
| | | | | Joined: Mar 2014 Posts: 6 Member | | Member
Joined: Mar 2014 Posts: 6 | David and CArmstrong, you're very welcome  | | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | When we were in New Mexico earlier this month I saw a new formulation of Biotene in the local Walmart. It was in a green label bottle in lieu of the blue and said it the original flavor. I assume that it is not the original formula, that's be way too much to hope for, just a new flavor. When I got back to Memphis I have not been able to locate it here or on Amazon. Has anybody else seen or tried this product?
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Jul 2016 Posts: 4 Member | | Member
Joined: Jul 2016 Posts: 4 | troylowe06 i used the spray and mouthwash had to take them back even with them open they burnt my mouth you say the gum is still ok need something for dry mouth
troylowe06 pariod gland removed 5-12-16 stage 2 cancer rad. tx started6-27-16 33 total to be done
| | | | | 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 | Look for gum that has xylitol in it. Years ago when I was a kid one came out. I think its called Quench.
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 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | I use Trident. Of all the ones I've seen it lists Xylitol highest in the ingredients list. Not perfect, but then what is. (besides chocolate)
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 2016 Posts: 10 Member | | Member
Joined: Aug 2016 Posts: 10 | Hi, I'm relatively new to this forum and just saw this post. I'm not sure if it was a coincidence, but I when I used the Biotene gel while I was starting my radiation treatments for OC, I developed painful white bumps on the front of my tongue where I had put most of the gel. This happened twice, after using the gel for 2-3 nights. After I stopped using the gel, the bumps went away after a few days. Has anyone else experienced this?
I have used the Biotene toothpaste and mouthwash with no problems, except the mouthwash hurt while my tongue was sore during radiation (I'm 4 weeks post-rad now).
SCC 4/20/16, bottom middle of L side of tongue, T2, HPV-neg
Partial glossectomy 5/9/16, L lymph nodes removed (neg), nerve invasion
30 rad 6/20/16-7/29/16
Non-smoker, non-drinker
| | | | | 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 | Over the years I dont remember anyone mentioning they experienced white bumps after using the Biotene gel. If anyone has their mouth burn while using mouthrinse (nonalcohol type), diluting it with water should help.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Many of my friends down under have raved about these products and I've heard successes as it rolled out to other countries. I met a person from a discussion on the old Biotene products before they were sold to GSK and the real power behind the brand, the patented enzymes, were removed. She insisted I try this and I had to cycle through the box of dry mouth products I am already evaluating.
I finally got to the products and day 1 was miraculous! It balanced my oral flora within minutes and removed the horrible lactose taste I have been battling since the feeding tube in March. I started last week and picked a day I knew I had appointments and would be out and about for several hours. I used the toothpaste, waited 20 minutes to get the maximum benefit of the fluoride, then followed with the mouthwash and about 30 minutes later, I added the gel on the way out to my first appointment.
I didn't really pay attention and 5 hours were gone before I knew it and I hadn't even taken 1 sip of water to flush out the usual crud buildup in the pyriform sinus area that causes all of the choking. This is a first since around September 2003, after week 3 of radiation treatment.
My curiosity kicked in and I have tried every possible combination to see if maybe all 3 products are overkill and I could not get close without all 3. I'm not sure of the cost or how long each individual product will last so I'm not sure of the economics as health insurance refuses to cover medically needed tooth anything as far as prescriptions and I don't know if one will be needed.
This product is the first thing I have seen that gets this close to the old Biotene products and that's pretty exciting! The gel doesn't last all night like the Biotene gel, maybe close to half as long but I think it will also be an excellent product for CPAP users. That is a segment of post radiated oral cancer survivors that suffer beyond belief trying to sleep because of xeristomia.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Ed, where did you get the Oral Seven? Is this available to everyone here in the US or were you sent a sample?
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 | | |
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