Saliva
Comments
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Miss Lady...
I can't offer any ideas to stimulate the saliva, and I believe it's different for everyone just like most of the rest of recovery and reaction while being treated.
I can say though that I started getting my saliva back slowly a few months after treatment ended. It did take nearly two plus years for it to come back fully, other than drying out some at night during sleep still.
A little history on me, Dx January 2009, STGIII SCC Tonsil Cancer. Nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU, then seven concurrent weeks of weekly Carboplatin and 35 daily Amifostine Injections and the radiation sessions.
So for me it was a long slow process, improvements gained more in weeks and months, not days and weeks.
I too carried a bottle of water everywhere...a bite of food, a sip of water...a sentence while talking, a sip of water.
Hopefully through time yours will improve...some are like me, some are about where you are right now, and many somewhere inbetween.
Best,
John0 -
My hub was given a script
My hub was given a script for medication; he's tried evoxac & salagen. He got his script about a month out of treatment; also chewed gum; used various biotene products; mouth wash; tooth paste; they make a mouth mist & little pads you put on the roof of your mouth.
Find a dentist that is familiar with radiation damage. You need to be fitted with a fluoride tray & use it nightly for the rest of your life. I'm surprised you do not have one; it's saved my hubs teeth. He stopped using his for 6 months because the mint flavored fluoride burned his gums & by mistake we found out there is a berry flavor that's easier on the mouth. He learned the hard way with the trays because his teeth started decaying & since he's started using them; he's had no issues.
At 2 years out; he does not need the saliva script any more. Good luck0 -
21 months out, no spit
No spit, no snot, and no tears here. I had stage 4 SCC base of tongue with mets to the lymph nodes on both sides of my neck, so the doctors weren't able to save salivary glands on either side and they maxed me out on the radiation. Consensus is that my saliva probably won't come back, either. I use all the biotene products, rinse, spray, gel, gum, and brush with Prevident fluoride toothpaste all the time. I have the fluoride trays, but don't typically use them every single day. I'd doing well to use them a few times a week. So far, so good, on no decay, but I try to avoid sweets, don't care for acidic foods, and have no interest in sodas or anything too sticky. I carry a water bottle everywhere, but recently figured out that if I'm chewing biotene gum, I can survive a trip down the driveway, or a speed run to the grocery store without excessive dryness.
Deb0 -
Dry Mouth
I still have some, very little , saliva function, to add to the mouth spray, biotene mouth wash, and constant water, my rad doc sugested lemon drop candies, while you wrote you are getting a lot of decay, I bought the sugarless ones and as much as I doubted they would help, the tart lemon flavor does seem to produce a bit more saliva for me.
Linda0 -
DESERT MOUTH
Hey Teacuplady, I had BOT surgery and 35 radiation treatments 11 1/2 years ago. My salivary glands were fried during the rad treatment, and I had no saliva for about 11 years; oh but I did have the ever popular industrial strength mucus. During that time I used a lot of Mouthkote spray, I never left home without it. Miraculously last summer, my glands started pumping out saliva again, and I haven't used Mouthkote since, so you never know.
PATRICK0 -
My saliva glands were
My saliva glands were sparred during my rad treatment so I only had a brief period of no saliva. It is now almost normal and I don't wake up with dry mouth so I can't offer much on that topic.
Your dentist has probably told you this but you must pay special attention to your teeth and gums. I use a prescription strength fluoride toothpaste before bed, floss on regular basis and try to brush my teeth multiple times per day. I recently purchased a Sonicare toothbrush and retired my old waterpic. Another thing if you chew gum consider getting one that contains Xylitol which will help prevent dental caries.
John0 -
that's pretty amazingpatricke said:DESERT MOUTH
Hey Teacuplady, I had BOT surgery and 35 radiation treatments 11 1/2 years ago. My salivary glands were fried during the rad treatment, and I had no saliva for about 11 years; oh but I did have the ever popular industrial strength mucus. During that time I used a lot of Mouthkote spray, I never left home without it. Miraculously last summer, my glands started pumping out saliva again, and I haven't used Mouthkote since, so you never know.
PATRICK
Your glands didn't "read the book" on what they were supposed to do:) It took me about 5 years or so. Then things went back to normal. The strangest thing is, I've just finished radiation for the second time. this time, my saliva never stopped. In fact I don't get dry in the least at night. Even though I just finished rads last week. Wonder what is up with that?
patrick (we'll have to call me patrick with a little p)0 -
Everything here pretty much covers it except for my plus...jtl said:My saliva glands were
My saliva glands were sparred during my rad treatment so I only had a brief period of no saliva. It is now almost normal and I don't wake up with dry mouth so I can't offer much on that topic.
Your dentist has probably told you this but you must pay special attention to your teeth and gums. I use a prescription strength fluoride toothpaste before bed, floss on regular basis and try to brush my teeth multiple times per day. I recently purchased a Sonicare toothbrush and retired my old waterpic. Another thing if you chew gum consider getting one that contains Xylitol which will help prevent dental caries.
John
I was given Pilocarpine by my radiolgist right out of treatment. It works in about 20% of Head and Neck patients I was told. I am fortunate, I am in that group! Now, the tabs are expensive. About $130.00 for a months supply. I took an article/sent to me by an ENT on xerostoma (dry mouth) in to my surgeon. The article suggested using the opthalmalic eye drops instead of the pills, much less expensive. So I do that now. It costs me $4.00 a bottle:) And, again it works.
Other tips for dry mouth, cut down on caffeine (acts as a diuretic..dries you out). So do alcoholic beverages. I do not use the trays with fluoride. My dentist has prescribed a colossal fluoride toothpaste, I love it. What a difference that makes! I've not had a cavity yet. Hooray.
Drops before bed, water at bedside. I usually sleep through anymore.0 -
CervezaGreend said:water
Since 1996 I have had a bottle of water with me 24X7 every day (other than when I go through airport security)and by my bed at night.
Wish it were otherwise.
Come on Denny.... I know I've cracked at least one cold one with you....LOL.
Best to you and family, hope you get your puppy situation sorted out.
JG0 -
Which brings up a point, Denny.Greend said:water
Since 1996 I have had a bottle of water with me 24X7 every day (other than when I go through airport security)and by my bed at night.
Wish it were otherwise.
Come D-Day (June 6th) of this year, I will have been completed with treatment for 3 years and am relegated as a Spring Chicken compared to vets like you. But, I've been going to a by-weekly support group for H & N survivors, and the discussions always lead to dry mouth resolutions and adaptations. In the last meeting, a few members wondered if there was some form of national identification card that could designate a survivor who consistantly needs some form of moisture due to dry mouth due to treatment. I travel quite a bit with my wife, and have been told many times that I could not bring my water bottle with me in certain situations. Almost got in a fight with the cable car operator in San Francisco, and.....as always....having to explain my situation to TSA folks, which is a hassel. Just wondering if it falls under the Individuals with Disabilities Act ??0 -
Lemon JuiceCajunEagle said:Which brings up a point, Denny.
Come D-Day (June 6th) of this year, I will have been completed with treatment for 3 years and am relegated as a Spring Chicken compared to vets like you. But, I've been going to a by-weekly support group for H & N survivors, and the discussions always lead to dry mouth resolutions and adaptations. In the last meeting, a few members wondered if there was some form of national identification card that could designate a survivor who consistantly needs some form of moisture due to dry mouth due to treatment. I travel quite a bit with my wife, and have been told many times that I could not bring my water bottle with me in certain situations. Almost got in a fight with the cable car operator in San Francisco, and.....as always....having to explain my situation to TSA folks, which is a hassel. Just wondering if it falls under the Individuals with Disabilities Act ??
Before my neck dissection my doctor sent me out for a gland scan. Sort of like a CT scan but they are looking to see if your salivary glands are working good. What the tech did was to put a lemon juice soaked wad of cloth (I think) on each side of my mouth and boy did it create a lot of saliva.
Now I wonder if doing that would stimulate the glands faster. Someone else said to use lemon drops so that's the right path.
This subject just got me thinking and that's my 2¢ worth.
TO'D0 -
Practice....tommyodavey said:Lemon Juice
Before my neck dissection my doctor sent me out for a gland scan. Sort of like a CT scan but they are looking to see if your salivary glands are working good. What the tech did was to put a lemon juice soaked wad of cloth (I think) on each side of my mouth and boy did it create a lot of saliva.
Now I wonder if doing that would stimulate the glands faster. Someone else said to use lemon drops so that's the right path.
This subject just got me thinking and that's my 2¢ worth.
TO'D
More than likely it had nothing to do with regaining saliva faster or not...
But, like you and many after rads...I was bone dry for several motnhs and had my bottle of water with me 24/7.
I was sitting on the couch one day and had that sensation you get when you feel your mouth water or produce saliva.
And I actually did produce a little on the left side (opposite of cancer), the side I had a little less intensity of radiation.
After that I started making a mental effort on trying to reproduce that sensation and saliva....little by little, my saliva did return..nearly 95% now.
Again, not sure if it had anything to do with regaining...I also had the 35 daily Amifostine Injections, which I feel helped, not sure though.
Best,
john0 -
Whoa... SkiffinSkiffin16 said:Practice....
More than likely it had nothing to do with regaining saliva faster or not...
But, like you and many after rads...I was bone dry for several motnhs and had my bottle of water with me 24/7.
I was sitting on the couch one day and had that sensation you get when you feel your mouth water or produce saliva.
And I actually did produce a little on the left side (opposite of cancer), the side I had a little less intensity of radiation.
After that I started making a mental effort on trying to reproduce that sensation and saliva....little by little, my saliva did return..nearly 95% now.
Again, not sure if it had anything to do with regaining...I also had the 35 daily Amifostine Injections, which I feel helped, not sure though.
Best,
john
I just tried that there little trick of yours about making a mental effort to try to reproduce the sensation of saliva. I think I got something. Golly! I'm going to have to keep working on this.
Deb0 -
So.......D Lewis said:Whoa... Skiffin
I just tried that there little trick of yours about making a mental effort to try to reproduce the sensation of saliva. I think I got something. Golly! I'm going to have to keep working on this.
Deb
it's a mind control therapy thing, huh ??? Guess I'll go around saying to myself, "Slobber......Give me slobber". I'll work on it, and time to get off the bottle. LOL !!
Larry0 -
Xylitol Gum or Lozenges!!!!!!CajunEagle said:So.......
it's a mind control therapy thing, huh ??? Guess I'll go around saying to myself, "Slobber......Give me slobber". I'll work on it, and time to get off the bottle. LOL !!
Larry
Gum Is my friend!!!!!!!!!!!!!!!!!!!!!!!
Xylitol! Gum or Lozenges!!!!!!!!!!!! Saliva all day!!!!!! Do I need to say anything more!
Charles0 -
Hi IAmStrong,IAmStrong said:Everything here pretty much covers it except for my plus...
I was given Pilocarpine by my radiolgist right out of treatment. It works in about 20% of Head and Neck patients I was told. I am fortunate, I am in that group! Now, the tabs are expensive. About $130.00 for a months supply. I took an article/sent to me by an ENT on xerostoma (dry mouth) in to my surgeon. The article suggested using the opthalmalic eye drops instead of the pills, much less expensive. So I do that now. It costs me $4.00 a bottle:) And, again it works.
Other tips for dry mouth, cut down on caffeine (acts as a diuretic..dries you out). So do alcoholic beverages. I do not use the trays with fluoride. My dentist has prescribed a colossal fluoride toothpaste, I love it. What a difference that makes! I've not had a cavity yet. Hooray.
Drops before bed, water at bedside. I usually sleep through anymore.
How do you use
Hi IAmStrong,
How do you use the Pilocarpine drops?
Chryssi0 -
Started Trident with xylitol this week
And boy was I surprised the amount of saliva it produces. I can spit!
It's really helped me with my voice drying out too.
No more water bottle through the day!
I just googled it, apparently studies show a 10-12x flow rate with sugarless gum, so I guess it makes sense.
I'm fortunate I have some saliva to begin with.0
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