| Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | We have searched for something to replace Biotene for over a year now. I have chased every possible lead, and followed a company that had the right thing, that could not get through the FDA because they didn't have the science data to support the enzymes and associated claims. We found a product out of Spain that has a US distributor, but the costs are through the roof, and I am still trying to sort something out with them so that we could get it for our members at some kind of discount or wholesale price to make it bearable. But most of the overseas things coming here, or that we have asked to be brought here, have high prices as a result of the shipping etc. that the trip adds to the costs of the product. This seems so simple, as this is a class one FDA product and getting something through them isn't that hard - I have taken class 4 products (implantable devices) through and understand the process well. OCF is not funded to produce a product, but this sure isn't rocket science. The problem for us, if I could find some donor to underwrite the idea, is that you are looking at making a minimum number of tubes, and without selling them in Walgeens etc. (which would put us out of our non-profit world) I don't think we could make a dent in getting rid of all of them over a couple of years to people that know us.... The search goes on.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2014 Posts: 6 Member | Member Joined: Mar 2014 Posts: 6 | Hello, I've been following this thread for some time. The demise of the original Biotene roughly coincided with my starting to sleep with a CPAP machine (very drying), and shortly after that I added a mouth-drying medication to the mix. I've had a lot of dental problems as a result of all these changes.
After doing some reading here and research on my own I settled on Sensodyne Pronamel which does not contain SLS. I use two rinses, the CVS dry mouth rinse which claims to still have the protective enzymes (no fluoride), and ACT Total Dry Mouth rinse with fluoride which to my surprise does not burn my mouth (most rinses do). I've been tempted to try the ACT dry mouth toothpaste because it is SLS free and has xylitol, but I haven't found out yet what the RDA (abrasiveness rating) is. Sensodyne Pronamel has a very low RDA -- unfortunately I just read that it is a GSK product and I hate sending any money their way.
Thank you, Brian and all who are contributing their experiences and ideas about solutions/alternatives for dry mouth care. On the sleep apnea/cpap forums we still have discussions about dry mouth care and I appreciate what I learn here so I can pass it along.
| | | | Joined: Jul 2014 Posts: 5 Member | Member Joined: Jul 2014 Posts: 5 | I was just at my Drs this morning for a followup of a sore they were watching. Just spent 2 weeks using a steroid rinse (gross!). He was a little concerned about some patches on my cheek and since I suffer from dry mouth he wants me to rinse with Biotene for the next month and see if it helps. Is this all for naught?
June 2015 - Biopsy of lesion of left side of the tongue June 2015 - Confirmed SSC August 2015 - partial glossectomy and left neck dissection
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Cathy,
I haven't tried the "new & improved" Biotene rinse yet, but their "new" toothpaste burns my mouth. I've been looking for a replacement mouth rinse for a while now, and the only brand I found that does not burn my mouth is Act. Act has a few different types and I think there is a dry mouth one. If you try the Biotene rinse, post a note here to let us know.
Did your doctor know that Biotene was bought by GSK and they changed all the formulas on all the products? Biotene products used to be good and were recommended by many doctors and other medical professionals.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Has anyone tried a product called Oranurse Flavorless Toothpaste? Like Brian, I'm constantly trying different toothpastes in the hope of finding a decent replacement for the original formula Biotene. This toothpaste was developed for autistic children who had trouble tolerating the taste of regular toothpastes. It contains no SLS and lists its ingredients as: Hydrated silica, glycerine, sorbitol, xylitol, cellulose gum and sodium benzoate.
I've ordered a tube through Amazon but it is also available on other sites. Hope this of some use.
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
| | | | 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 | Havent tried it but the toothpaste it does sound like it should help OC patients/survivors. Xylitol helps with saliva.
Anyone who orders thru Amazon please go thru the link on our page. Its very easy and does not cost one cent more. By clicking on the Amazon box prior to shopping on Amazon a small portion of your total gets kicked back to OCF. Sorry, I cant remember if its 5% or 6%. This doesnt sound like much but it all adds up to help OCF manage some of its expenses. 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 2014 Posts: 5 Member | Member Joined: Jul 2014 Posts: 5 | I've been using Squigle Tooth Builder (Sensitive), 36% Xylitol. It has no flavor nor fluoride and for me, does not burn. I checked w/ my dentist and he said I really don't need flouride. For now, however, I'm mixing it w/ a small amount of the original Biotene paste (still have a couple of tubes). http://www.squigle.com/tbingredients.html If you want/need fluoride try Squigle Enamel Saver, also has 36 % Xylitol + flavor (peppermint). http://www.squigle.com/squigleingredients.htmlI haven't tried the Enamel Saver because I generally do not do well w/ natural flavors. Check out the links for exact ingredients. No SLS. Per Squigle only "mouth friendly ingredients" which help w/ canker sores/mouth ulcers, dry mouth and other things. I originally ordered the Tooth Builder on Amazon, but now see the price is outrageous there. Luckyvitamin.com has it for $7.52 Only need to use a small amount. | | | | Joined: May 2016 Posts: 7 Member | Member Joined: May 2016 Posts: 7 | Well rats! I'm halfway through radiation and have almost finished a bottle of Biotene rinse. I was planning to get more soon. I will be paying attention here for further info and advice on comparable products. I've been told my dry mouth will be permanent to some extent so I will probably want to always have some product on hand. Thanks for the info, I wouldn't have known.
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 | CA, so far both the CVS and the Rite-Aid generic Biotene equivalents still have the dry mouth rinse with enzymes like the original Biotene had.
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Thanks, Kaiasgram, that's good to know.
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
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