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Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Thank you Margaret and Poiuyt!!!

I will check to see whats going on with the samples. Im sending you a PM to get more specific details.


Christine
SCC 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 smile
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
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I received a package today.


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: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

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Thanks for participating, Paul!!! Glad your package has arrived.


Christine
SCC 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 smile
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Thanks, I think that was Uptown. I didn't receive any samples yet.


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: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
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My samples were just delivered. Thank you!


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 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Oppps!!! Im sorry!!!

I had read one of your posts just before this. Thank you both Uptown and Paul smile


Christine
SCC 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 smile
Joined: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
Likes: 1
Brian,

Any update on the Biotene replacement products?

I'm out of the Biotene mouthwash and only one tube left of the toothpaste, so I've been using it sparingly. I've been trying other brands, and haven't found a mouthwash that does not burn even if I dilute it with water (50/50 ratio).

I tried a number of toothpastes including Tom's of Maine which is advertised as "natural". Their "Simply White / Clean Mint" one burns as much as Crest and Colgate. So as others have suggested, I tried their children's toothpaste - that doesn't burn (which is great), but doesn't have the enzymes that were in Biotene. I do use a prescription fluoride toothpaste once a day (burns a bit), but at least I'm getting some fluoride.

I've been using MedActive Oral Relief Spray and Lozenges - both work pretty good for dry mouth relief.

I'm mainly looking for toothpaste and mouthwash. Any suggestions?


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 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Posts: 1,406
Susan, I've been using "The Natural Dentist healthy teeth and gums All in One" fluoride toothpaste. It's advertised (on the tube) as having "no SLS". Doubtless a good thing although at the moment I can't quite tell you what that means. Someone here will know. Believe I got it on Amazon, or possibly Walgreen's online.

From what I read of your posts I likely don't have the sensitivity you do... but you might give it a try, or at least find the label and see if you think it will work for you.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Mar 2002
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OCF Founder
Patient Advocate (old timer, 2000 posts)
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SLS stands for sodium lauryl sulfate, which is widely known in toothpastes to be a tissue irritant, particularly problematic if your have herpes simplex lesions, or aphthous ulcers in your mouth. HSV1 lesions and aphthous ulcers are very common throughout the US population so having this ingredient in a paste is not a great thing.

It's essentially a detergent, but there are many others to choose from that are far less irritating. It chosen often in cosmetics, shampoos, toothpaste etc. because it is very inexpensive. There are some companies that attempt to hide the fact that it is a chemical to be avoided, some go so far as to suggest it is a "natural" product (whatever that means today as it is a flimsy word tool to get people to trust things they buy) because it comes from coconuts. To anyone unaware this seems like it should make it ok to include in "natural" products. Having said that, many "naturally" occurring products in the world are carcinogenic, poisonous, hormone altering, (I could go on ad nauseum here), and essentially toxic. Manufacturers that use it say that yes, there are thousands of negative scientific articles on SLS, but it is an issue of "volume and frequency of exposure"... While true, I choose to avoid it, life has enough things in it that are already assaults on my biology, why add to the burden.

If you could choose a dentifrice that did not contain this ingredient, it would be a better choice than one that does.

Last edited by Brian Hill; 09-27-2015 06:53 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: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Posts: 1,406
Thanks, Brian. Wise words. I've been on the Natural Dentist stuff for over a year and like it just fine. No problems. But I'd still be interested in trying others.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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