| | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Ok Fellow Warriors,
Kevin and I were wondering if anyone has found anything that remotely works for dry mouth. Wishful thinking, but thought I'd ask.
Thanks,
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | It doesn't cure the dry mouth but once my mouth had healed enough to tolerate it, I found that sparkling water was really refreshing and made my mouth feel fresh and moist for longer than plain water. The Biotene products help with comfort as well. Also, a humidifier next to the bed at night has reduced the number of times I wake up to drink water.
I didn't see much improvement with Salagen but I know it has helped some people. My swallowing therapist also suggested acupuncture but my saliva has been returning on it's own lately so I haven't needed to try it. Hopefully with a little more time, Kevin's saliva will come back, too.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Thanks for responding,
Kev has some saliva, but not much. He was hoping someone would know if there was anything to enhance what he has. He only has to take a couple drinks at night now, so it has definitely gotten better. I know most everyone struggles with it!!
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | 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 | There are medications that can be taken like Pilocarpine. Some people find them very helpful. I didnt like it at all. It made me sweat, I tried it in the summer so it didnt work very well for me. (You know girls dont sweat. LOL!)
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | I drink water and use Biotene products (tooth paste, mouth rinse, gum etc) and I dont have a problem with try mouth at all. Hope this helps a little!!Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Thanks for the help!! We just talked about the Biotene today. He tried it awhile ago and it didn't seem to help, but I'm wondering if now that he's getting a little saliva they won't work better. Will try it.
Thanks,
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Feb 2010 Posts: 79 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2010 Posts: 79 | Last month, OCF had a booth at the Rocky Mountain Dental Convention. I spent 2 fun days there as a volunteer. The guys in the booth next to us had a product called OraMoist Dry Mouth Patch. It's about the size of an M&M and it attaches to the roof of your mouth and slowly dissolves. Since I have dentures, I put mine on the inside of my cheek. I like them a lot especially at night time. I'm not waking up as often in the middle of the night due to an extremely dry mouth! They gave me a couple of boxes of them so I haven't had to order yet but I have been told that you can get them on Amazon.
Cathi
57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends
*** 1-7-16 passed away unexpectedly ***
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Thanks Cathi. We will check that out too.
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | I ordered a box on Amazon yesterday. If it works I will order more. Will let you know.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Sounds good.
Cathi has sent Kevin a bit so he can try it. He leaves for work in Alaska for 3 weeks Wed, so there wasn't time to order and have it shipped without paying major shipping. Cathi awesomely offered to send some priority mail so it should be here by Monday.!! This way he can take them with him for the bad days.
I LOVE OCF!!
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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