#85400 12-04-2008 08:27 PM | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | I was reading another post and it mentioned something about a saliva substitute. Is that a prescription medication or something you just purchase over the counter? I have mentioned the extream dryness in my mouth and my RO hasn't said anything about giving me anything or what to do. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | I posted something about a prescription product that is a saliva substitute. It is called Capahsol and you just swish and spit. It seems to be helping me, but it does have a salty taste to me. Could just be me since a bunch of my taste buds left with my tongue. There are also pills that can be prescribed, but I have not tried those yet.
There are over the counter products too - Biotene makes one. They are usually in the toothpaste/mouthwash section at Walmart or your pharmacy.
Hope this helps and good luck.
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | The medication I was given to increase saliva is called salagen (pilocarpine). I used it throughout RT and for a few months afterwards.
I started using the Biotene products a few years ago and still use them today. My saliva output is pretty good, but still have a wierd taste in my mouth all the time. Probably a permanent side effect.
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: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | i am okay on the saliva part but i still like the biotene products they just feel better after the surgery etc ... they are very soothing if your RO has not responded with help - then ask again and again and again and again and again - all in the same visit LOL ... make sure they listen hon = tell them you are not moving your lips for practice but you have a concern and need their HELP. YOU are the patient - that does not mean you are there to practice your patience. DEMAND they listen. dont let them leave the room without it and now why am i so thirsty ... must be reading all this dry mouth stuff LOL ... and now i will go and drink and be up 10 times tonight to go potty and already having trouble sleeping LOL NIGHT ALL - I hope 
Last edited by azcallin; 12-05-2008 04:30 AM.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Thanks for the info and good one Rita. I wish I could get my EMT to pay attention. I only have 2 more days of Rads and I will be finished with the rad and chemo.. I can hardly believe it. I will be so happy to find out if all this work has been for the good and has cleared up my cancer. Thank you all for all the information and the kindness you have given to me while I have so many problems. Little ones compared to a lot of people but has been a hard road to travel for me. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | It sure was a relief to me to have the last Nuke'm, Danno! done so I could get on with the business of healing (Even 'tho I knew it would get worse before it got better).
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Angel Walmart is the cheapest place to buy Biotene products. I use the toothpaste too but have no teeth. I brush my mouth with it any where I can reach and then swish the Biotene mouthwash around after for about a minute. I Have no saliva either and might not ever get it back so I just let Biotene stock go higher... LOL and my wallet thinner. The green Biotene wash is 6.97 and the paste about the same.
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) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I didn't find any use for the Biotene gum until over a year post Tx when all of a sudden I felt like chewing it did replace the constant need for a handy water bottle. Now I continue to chew it daily and I found that Wal Mart is by far the cheapest place to but it. Funny that you have to get it from the Pharmacy dept but well worth the wait in line.
Just remember that our recovery is a constant work in progress so keep trying things that didn't taste good or help in the past.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | My local pharmacy also keeps it inside the work area, not out on a shelf.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I had dry mouth when I first came home and as I healed it seems to be much better even drooling like a st. bernard. Although I never had radiation. I think things are just healing
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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