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Joined: Sep 2006
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Fish,

Add your particulars to your Signature Line as it helps when others want to post a response to anything you say.

That said, I believe you just finished Tx? and if that's so then what tastes good or bad today doesn't mean that it will be that way forever.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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My RO has me brushing my tongue with biotene toothpaste to try and get rid of this fungus all of the way. Never saw anything so stubborn. LOL wish I was brushing toofys.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Posts: 5,260
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I bought the Biotene spray today at WalMart. I hope it woks good for me too. My mouth is dry as sandpaper. Not the wet either that is used to sand for a paint job. LOL


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
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The biotene mouth spray and mouthwash both burn my mouth. I love their toothpaste though.


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: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 5,260
I use the toothpaste to brush my tongue and gums and use the mouth wash and now the spray. LOL Starting to sound like a testimonial.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Jim,

Just a thought. Now that you're an OLDIE maybe you should put some dates in your signature line so NEWBIES can track your progression.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Dave, evreytime I try to do it where it makes sense, I run out of my alloted space. This last one, I made sure would fit.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Sep 2008
Posts: 250
Platinum Member (200+ posts)
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Platinum Member (200+ posts)

Joined: Sep 2008
Posts: 250
Now, see? You all have helped me already. I suffer from a horribly, unbelievably dry mouth, but didn't like the Biotine stuff they gave me then. I've been joking to friends that I ought to carry a can of Pam cooking spray - especially if I get my teeth. I'm so glad I found this site. I'm surrounded by family and friends, but have been pretty isolated for the last almost 2 years from others who are dealing with these issues. I've got Biotine spray on my shopping list. Thank you!


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2007
Posts: 580
Lani G,
Go to ther biotene web site and send them an e-mail and they will load you up with free samples.
Welcome to the site.
Cheers,
Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
Joined: Sep 2008
Posts: 250
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Platinum Member (200+ posts)

Joined: Sep 2008
Posts: 250
Mike,
I will tonight. Thank you. This makes me less wary of the false teeth, IF I can get them. It would be terrible to go through another surgery and hyperbolic treatments so far from home for them and find out that I can't use them.
This stuff might also help with my sleep problem. I usually wake up after 1 1/2 to 2 hours from the dryness that goes all the way down my throat and windpipe to my collarbone. I take a sip of water and a shot from my inhaler, but can't get back to sleep for another couple of hours.

Teeth and moisture will help with my eating problems (though swallowing is still a challenge) and if I can eat more I should gain more weight and have more energy. Wow! Things could maybe get a lot better. I was already pretty thankful for my status quo.

Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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