| | 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 | In an early post I said I was going to try mail order "Squigle" toothpaste, in spite of the funny kid's name because I heard it had mild flavor and wouldn't burn. It didn't. But its claim to fame, that it has a huge amount of xylitol in it and that was decay preventative, has some but weak science to back up the claim. I asked the manufacturer to send me something to back up the claims they were making in the marketplace, but what I got were partials of an UNpublished study done 20 years ago about xylitol. They did not get that that does not constitute scientific evidence� Still counting on our new company to provide me samples soon. Squigle isn't the solution.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I hope you don't mind if I bring a little light hearted info to your post Brian. As soon as I read the name Squigle it reminded me straight away of a favourite with kids here which started in the 1950's. Different spelling but maybe they are related  Gabriele " Mr. Squiggle was Australia's longest-running children's television series, and the name of the title character from that ABC show.
Mr. Squiggle was a marionette with a pencil for a nose, who visited his friends from his home at 93 Crater Crescent on the Moon, flying in his pet rocket (named Rocket)." 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | | "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | Oh Haha I remember mr squiggle!
Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | CVS is offering a dry mouth spray under their on label with 7 enzymes - it was positioned near the Biotene products in our store. We didn't buy it as my husband doesn't us it - but it might be worth checking out.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Australians always get the best shows!
I was about to ask if anyone had ever tried the Tom's of Maine Dry Mouth TP... but I just read some reviews on Amazon. So Tom's (at least as of 2012) is owned by Colgate and their stuff contains lauryl sulfate. On to the next.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Ok, well I was down at my local Walgreen's yesterday. They've built a flagship store here in wonderful Hollywood, CA which looks more like a department store than a drugstore. Quick survey of the toothpaste aisle turned up one item called "Dr. Collins Natural". Found the ingredients list online and here it is: Ingredients Dicalcium Phosphate Dihydrate , Water (Purified) , Xylitol , Glycerin , SilicaHydrated , Cellulose Gum , Zinc Citrate Trihydrate , Aloe Vera (Aloe Barbadensis) Leaf Juice , Magnolia Officinalis Bark Extract , Lycium Chinense (Goji) Fruit Extract , Pomegranate (Punica Granatum) Extract , Melaleuca Alternifolia (Tea Tree) Leaf Oil , Coenzyme Q10 , Vitamin E Acetate , Stevia (Stevia Rebaudiana) ExtractLeaf & Stem , Ascorbic Acid (Vitamin C) , Titanium Dioxide , Sodium Methyl Cocoyl Taurate , Propylene Glycol , Sodium Hydroxide Here also is the link to the entire page: http://www.walgreens.com/search/res...iew=allView&Ntt=natural%20toothpasteWhen I have a minute I'll go through those options, although I'm not sure what I'm looking for beyond the absence of lauryl sulfate. Any tips?
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: 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 | Does anyone know what good ingredients we should be looking for? Also helpful would be to know what the bad ones are to avoid.
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: 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 | David, the big drawback to all these as xerostomia sufferers; we have high issues with caries development. Most of them have -0- fluoride. We need a fluoride delivery vehicle.
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: 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 | Brian, have you looked at some of the phenol antioxidants used in the PerioSciences hydrating toothpaste?
Phloretin
Ferulic Acid
Also, they add:
Sodium hyaluronate which is also used as an injection into knees to avoid knee transplants.
Echinacea purpurea for it's sialogogue properties.
Sodium ascorbyl phosphate for vitamin C to suppress bacteria growth.
Hydroxyapatite for it's remineralization properties.
Sodium monofluorophosphate 0.76% which is much lower than the Prevident 5000 I use.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Thanks, Brian. A critical point to be sure and one I was conveniently forgetting. Here's another TP from Walgreen's called The Natural Dentist Healthy Teeth and Gums Anti-Cavity Toothpaste:
Active Ingredients
Sodium Fluoride (0.24%) (0.15% w/v Fluoride Ion)Anticavity
Inactive Ingredients
Vegetable Glycerin , Silica , Water (Purified) , Sorbitol , Xylitol , Cocamidopropyl Betaine , Aloe Vera (Aloe Barbadensis) Gel , Cellulose Gum , Titanium Dioxide , Natural Flavors , Echinacea Angustifolia (Coneflower) , Goldenseal , Calendula (Calendula Officinalis) Flower , Xanthan Gum , Citric Acid , Grapefruit Seed Extract
I note that my (old formula I think) last remaining Biotene tube lists as its only active ingredient Sodium Monofluorophosphate (0.14% w/v fluoride ion).
My girlfriend's Crest has Sodium fluoride 0.243% (0.15% w/v fluoride ion)
Here's the full link to the Dentist's Natural listing:
http://www.walgreens.com/store/c/the-natural-dentist-healthy-teeth--gums-anti-cavitytoothpaste%2c-peppermint-twist/ID=prod6141850-product
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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