| Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Hey Jim,
Good to hear from you!! You've been MIA for too long!
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: Sep 2013 Posts: 94 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2013 Posts: 94 | Hi Susan,
I have sent you the PM with the formulas. I have copied and pasted from Amazon, hopefully you can read it.
36, female, left tonsil HPV+ SCC, T2N1 8/28/13 SCC in left tonsil 9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed 9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL 10/28/13 rad begins, 30 treatments, tomotherapy 12/09/13 radiation ends! 2/10/14 papillary thyroid cancer 2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst 2/27/14 thyroidectomy 3/5/14 pelvic ultrasound
| | | | 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 | So there are a ton of really obvious changes. First, they took out all the patented and trademarked LP3 Salivary Enzyme System chemistry. These are the every expensive enzymes that served an important function in your mouth, the three most important were Lactoperioxidase, Lactoferrin, and lysozyme. Because of the cost of these, the paste had to retail at a much higher price then the competition. The also replaced the stannous fluid with sodium fluoride. The are significant difference in these two products, and of course costs as well. They have added some kind of foaming agent to the paste which was not there before, and while may people have their suspicions what this, is until we get the chemistry back from someone who is running this through an independent laboratory to see what on the "inactive ingredient list" which has pretty much been eliminated, I don't know what it is. But anyone who is familiar with the old product, knows that it didn't foam up much in your mouth. This stuff today is like expanding foam that you use to seal your air leaks around your windows!! The primary sweetening agent in the old product was xylitol which is actually cario-static, helping to prevent the formation of decay and way more expensive than other artificial sweeteners -and now we have sugar, alcohol, sucralose, and saccharin. None of which are good for you. There is more, but two people who I respect have eluded to more inactive ingredients that are actually harmful, and as soon as I can verify that I will list what they are. Bottom line, except for some glycerin which is cheap ( and water soluble so it does not stay in your mouth) there is little in here that is really going to help your dry mouth, and as I stated previously, the composition of this new formula is not that much different that the cheap toothpastes on the market. So I stand by my opinion that this is a lesser product in many ways, and they are still selling it at the really high price of the original product with all the expensive components in it. They think no one will read the label perhaps. Their other products appear unchanged at this time. But certainly when their inventory level changes, we will have to consider what they replace those with. GSK is a multi billion dollar company that has done some really good things, like come out with an HPV vaccine, but in consumer healthcare they have a completely different operating philosophy apparently. They have huge market share, and I doubt that a little non-profit like OCF is going to turn away all the people that see their millions of dollars worth of TV commercials and ads. But for those in the know that we can reach, we want them not to find false hope in an inferior product to the high quality paste that they put out for many years. The new formula is certainly not worth what you are paying for it. Someone please correctly me if I am wrong, but on the old tube I never recall seeing a warning that said "if you ingested more than the amount that you would normally put on a toothbrush, you should get medical help and call poison a control center immediately". I don't have an old tube to refer to. Also on the completely independent Amazon.com customer comments board you can see that up until mid 2013 the reviews were stellar. After that point in time the most recent reviews are all complaints about the change. http://www.amazon.com/Biotene-Mouth...ints=0&sortBy=bySubmissionDateDescending
Last edited by Brian Hill; 10-23-2013 08:35 PM.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | I just saw a commercial on TV for Biotene toothpaste. They still claim using this product will help people with dry mouth. How can they get away with saying that when the ingredients don't support that? Could this be an issue for the FDA to examine more closely? It sure sounds like a false claim to me. By the way, Clark has been using this stuff for years since his diagnosis. It is so disappointing that market share and profit making have turned this into a useless product. What a scam!
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | 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 | Anita, this is a class one FDA product. It does not have to meet much in the way of requirement for approval, but the labels have to be honest, which they are. ALWAYS READ YOUR LABELS WHEN BUYING FOOD AND OTC DRUGS.
I think everyone will really be surprised when we are able to post the inactive ingredient list.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | I may be in luck! My local drug store appears to have both the "old" and "new" formula, and the toothpaste I bought a few months ago was the "old". I have the Gentle Mint Gel flavor, and on the front in red it states "Protein-Enzyme System", and "Gentle, Low Foaming Formula", which I believe is the old formula. The drug store also had the "new" formula which states instead "Essential Fluoride Tooth Protection" and "Gentle Formula". The type of fluoride is different between the two formulas as Brian noted. The warning is the same on both tubes, and I check other toothpaste we have and it is on there also. I believe that is a standard warning for any toothpaste that contains fluoride. So why is it that many communities add fluoride to the water????? Ironically while I was typing this a Biotene commercial came on TV.
Last edited by Susan2992; 10-23-2013 09:38 PM.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Here is a MSDS, Material Safety Data Sheet, upadted in August, 2013 for Biotene Dry Mouth Toothpaste: http://www.msds-gsk.com/consumer/13245002.pdf
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2011 Posts: 54 | Any good replacement for Biotene?
I'm so bummed about this but it makes sense. I bought a new tube a month or so ago and I noticed the foaming action right away. I didn't care for it. I also noticed it stung my mouth a tad more. I can't use regular toothpaste because the mint or something burns my whole mouth. My plan will be to use my daughters Toms children's strawberry toothpaste. It doesn't sting. But it won't do anything for my dry mouth- I don't think.
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked; 2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013; 3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | 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 | Interesting sheet Paul, but as a class one product they don't have to list anything here, as this is intended for the workers handling the product in bulk and with routine. We'll know soon enough what all the other ingredients are.
No there isn't anything else out there that I would recommend right now. All toothpastes have really strong flavors which irritate our mouths, but in normal people it creates the illusion that their mouth is "really clean and fresh." And the trend now is toward toothpastes that do it all, bleach your teeth, ( that really burns) freshen your breath, claim to harden your enamel ( kind of a long shot that sells things that have calcium in them) fight sensitivity, (this is really doable) etc. So finding something simple and straight forward can be problematic.
We are in conversations with some companies encouraging them to enter the marketplace with an OCF endorsement of a compatible product. None would have the enzymes as GSK bought that patent. But there is a whole list of tissue soothing ingredients that several people are working on for me that combined with the right fluoride and a very mild flavor would help us greatly. Will keep posting when something relevant changes.
Last edited by Brian Hill; 10-24-2013 06:48 PM.
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 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 | Anne, The FDA is grossly underfunded, especially since the sequester, understaffed, and more. They have real dangerous drugs to monitor, not to mention our food chain, which big business and factory animal farming is trying to kill most of the oversight and inspection of - all on their table. Looking at a toothpaste that is making a claim which cannot be substantiated is pretty far down their list of protecting Americans.
The best way to deal with Biotene is through their sales. Don't buy from them. It doesn't mean that they will change, especially if most people do not know what we all know, and do not read lanes beyond the claims. Look how many people will by a product that says "natural" on it because somehow that think that is better for them. That term means less than nothing!!! Cancer is natural, so are tons of poisons. Lemmings - all of them. But many companies given enough financial pressure will bend to the will of their customers wallets and bad PR.
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. | | |
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