#69815 02-13-2008 06:48 AM | Joined: Dec 2007 Posts: 138 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Dec 2007 Posts: 138 | I've just been waiting and waiting for my saliva to come back. I was told that I should be able to form spit again, but I cannot as of yet. I am just wondering if any of you have regained the ability to form spit again?
Last edited by x28007; 02-13-2008 06:48 AM.
Nine years out. New normal with limitations, but surviving and living life to the fullest.
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Nope. Finished treatment shortly after you did. Not close to having spit back yet.
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | I have just got mine back cant eat yet but get so excited when i get a wet mouth, have you tried sugar free gum....Biotene is best if you can get it? it is working really well for me.
Debz
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | I also chewed a lot of gum before my saliva came back. The Biotene is good, but my dentist recommended Trident white, which came in a fruit flavor, so I chewed that.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Girlcat i didnt think about the fruit flavour i am finding i can handle the taste of sweet better than savoury so i will try that gum.....when did you get your saliva back?
debz
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | I finished treatment in June, and chewed a lot of gum up through September and started to get a lot more saliva in October. Somedays I feel like I have a normal amount of saliva, then suddenly it's less again. To put it in perspective--my acupuncturist at Dana Farber said he has several patients that awaken hourly each night because their dry mouth is so bad. So I would say if you are not getting up several times a night consider yourself lucky.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | 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 am 17 months post and I can now spit and even lick multiple envelopes at one sitting. My saliva is not 100% but it is not close to the burden it was say 6 months ago. I hope your will continue to improve as mine did & I hope I'm not finished yet.
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: Sep 2007 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2007 Posts: 148 | I can't chew gum I have no teeth and no spit so even the kind for dentures won't work for me. I have thought I had spit a couple of times but I am not sure. My Rad Dr told me that the ENT totally cut out one of my saliva glands so not to expect it back alot. That is a bummer. But I keep hoping my other ones will kick in at any time so I too can lick envelops. Or even my lips. Don't think too hard about it just enjoy every NEW thing that comes up and when you taste the taste of your saliva it will be great! Brenda
49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL, you sound just like me in your situation. I know it's very tough on us. But as they say,, grin and bear it.
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: Mar 2007 Posts: 24 Member | | Member
Joined: Mar 2007 Posts: 24 | I have some saliva, enough to swallow periodically, but not quite enough to eat normally. I still need to drink plent of water with each meal. I still wake up every couple of hours because of dry mouth, so much so that it really isn't a problem to fall back to sleep. Biotene makes both a gel and a liquid to spread on your mouth which gives temporary relief, both Rite Aid and Walgreen's carry them. My biggest problem is the plug of mucous in the back of my nose that wouldn't go away. It restricts exhaling so much that I have to exhale through my mouth. No matter what, I am thankful for being on the downhill side of this and through with radiation.
SCC lf tonsil. Tx started 03/07/07,39 rads,8 docetaxel & 4 bevacizumab. Re-occured 02/19/08 back of throat. Tx35 rads 8 chemo. Tx started 05/05/08. PEG re-inserted April,2007.
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