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Dear Saliva........

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

You've been away for far too long and I really miss you!Cry

 

Its been since July 2012 that i finished rads and still no sign of any new saliva. Is it still too soon for me to be whining about this?

Its not like me to be negative, I'm usually a glass half full kind of girl but this is making me nuts. I have bad days with the no salivia and worse days but never yet have I had a good days since treatment, as far as saliva goes. Is it crazy for me to think I should have more by now? I know we are all different but I'd love to hear how long it took or has taken you to get even some back.

I've about OD'd on Biotene and xylimelts and gum with xylitol and nothing is working. I realize those things are only meant to help while chewing, rinsing or using them but I'm not seeing a whole lot of increase in saliva even when that stuff is in my mouth. I'd love to hear if anything special is working for you.

 

I would have sent this via USPS to each of you but my mouth is too dry to even lick an envelope...kidding...but serious.Wink

Billie

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

Billie.

 

No saliva or spit, nothing?  Since I am still in my rookie year I do not have much experience in spit recovery, but I do venture out (away from home) without my water bottle (not far and there are hundreds of places to get something to drink).  I am not crazy enough to go very far without drink and I am still drinking 10 glasses a day.  I don’t venture out without knowing where the bathrooms are either.

 

I do think I am getting better.  I still use xylimelts before sleep and wake up on the fringe of needing water.  It use to be I would wake up in the middle of the night with desert mouth.

 

I read all these saliva recovery stories and have to believe they are true.  Keep the faith.

 

Your spitting friend,

(little bit)

 

Matt

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

5 to 10% back....I mean, I can lick my lips at least.  When I wake up in the morning, tho....I could knock on doors with my tongue.  John said it took him 2 years to get 90 to 95% of it back....I think it's all in the luck of the draw....on how much we get back.  I hope I didn't suffer thru Amifostine to only get back 10%.  It's still pretty early to tell, tho....I'm thinking a year after treatment should give an indication of how good (or not so good) it's going to be.

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I sure hope it will get better. I hate to complain when others have it so much worse than me. Guess I'm just being a big baby.
Matt...I still never leave home without water and I too can tell you where just about every bathroom in the city is...haha
Phrannie....you made me laugh, the thought of you knocking on a door with your tongue...hahaha

I was explaining my dry mouth to someone the other day and he asked if it was like cotton mouth the morning after drinking. I had to laugh a little. It's been years since I've had that morning after mouth...oh to be young and invincible. Anyway I told him that I would be happy if I had that much saliva! It's that bad. Sometimes my tongue gets stuck it's so dry...stuck right to my palate.

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

it's all part of your new normal that will continue to change for years to come. for me it was 2-3 years post treatment and it became slightly for the good. amazing just 3 years ago and 14 years post treatment i had to take a risk and remove the back lower teeth due to radiation longterm damage. following that the moisture became much better. still need water to eat and if i am talking alot, but still the continueing change of new normal.

 

if you haven't tried Stopper4, i suggest you do. just do a google on it for where to buy. it is only available on line not in stores.

sure hope it gets better or you get more used to your new normal. for me nothing has ever returned to the status before receiving the gift that keeps on giving.

 

john

 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thank you, I'm sorry you lost your back teeth tho :-(

I will for sure check out Stopper4, I'll let you know.
Billie

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

I used Stoppers4 all thru treatment, it was the only replacement that worked for me....so yeah, giving it a try might be an answer.  I still keep it on my bedside nightstand...but have only had to use it a couple of times in the last two months or so.

p

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

Wow, I just counted, and I'm about 2 1/2 years out from end of treatment. Can't lick my lips.  Can't lick an envelope without taking a sip of water. Only waking up once or twice a night now, to take a drink of water, but I do wake up in the morning with the worst 'beef jerky tongue.' Carry a water bottle everywhere.  Realized the other day that I'd walked into the grocery store without my water bottle.  Eeeeek.  Only becomes a problem if someone tries to talk to me.

Deb

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

That's me exactly, well except it's not been that long for me yet.
I'm hoping we all get our drooling back!
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thanks everyone for all of your input and for letting me whine a little, I feel better now.

Billie

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

wish I had some good saliva news for you. we finished rads about the same time, and my juices aren't flowing much yet either. maybe just small improvement, like 10%.

carrying my water bottle around with me everywhere, I've been wondering when some joker would try to prevent me from taking it in to an event. I've been to movies--no problem. through county court house security--no problem. college hockey game--no problem.

last weekend it finally happened--a door goon at the BGSU vs. Central Florida women's hoops game tried to make me empty my bottle. but I played the throat cancer card on him and his supervisor, and they backed down fast. Cool

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

I love a good whine in the morning!  Feeling more like facing my day now.

Deb

Mikemetz's picture
Mikemetz
Posts: 354
Joined: Nov 2011

I'm going on 4 years post-rads and have a mix of recovery on my saliva. And, it took a long time to get this far.  I am OK during the day, but wake up at night with a very dry tongue and mouth.  A few rinses of water and I'm OK until morning.  I drink lots of water with every meal, and have learned to avoid foods that will be too dry to swallow, even with water.  I THINK I could lick an envelope, but can't get my tongue out that far to do it!

If it's not one thing...

Mike

 

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Not whining at all....

As to where each of you are, it all falls under that category of each being different.

I can't remember how long it was before I started getting those first little hints of saliva.

I do remember seeing something on TV, not sure....

But you know how you (used) to see something especially tart, the tingle in the soft spot nehind your ear, instantly producing a little drool...

Anyways, I was doing something or watching TV and that happened..., not a lot of saliva, but just barely a hint..., and only on the least radiated site. My right side got something like 70Gy, left 60Gy...

Anyways...again, I started trying to reproduce that...sometimes it would work a little, sometimes not.

I have no idea if indeed it did have anythng to do with me getting my saliva back, but some where between 12 - 18 months I had nearly all of my saliva eventually return. Now at nearly four years since finishing treatment, and the last almost two years or so, I'm only lacking a little at night during sleep.

I thnk over all, many of not nearly all on here have eventually gotten back most all of their taste and saliva.... There are unfortunately a few that haven't totally..., but a good portion at least.

So unfortunately I can only say, that more than likely when it's time you'll be a spit slinger again, it's just another slow process. sad

Best ~ John

hawk711's picture
hawk711
Posts: 527
Joined: Jan 2010

Billie

I am on a similar stage as Skiffin John.  I am 2years 9 months post treatment and I have about 70% saliva level at this time.  It took me 1.5-2 years to start moving without the water bottle attached to my belt.  I was frustrated at the 6 mos, 1 year and 1.5 year levels, thinking it would never get better, but it has and I'm glad.  Just give it more time and chew a lot of sugar free gum, it still gets me through a lot of conversations....

Keep pluggin,

Stve

ErthWlkr
Posts: 49
Joined: Oct 2012

Hi Billie -

Hard to remember - but I think my mouth remained fairly dry for at least the first year following radiation treatment. I don't think it was a severe as yours - but I still couldn't eat a meal without liquids nearby and some foods I avoided altogether. I'm 5 years out now and I still have some dryness - I'd say i got back around 90%. Most of the recover was in the 2nd-3rd year. Then everything plateaued out.

I also kept sucking candies handy - Worther's hard caramels were a favorite but I would forget, bite down, and chip a tooth. After the third time I gave them up. Gum was always in my pocket and in my car. Water bottles a necessity. Gleclair was the only prescription drug I tried but it didn't work that well for me.

Just to add to the wonderfulness of treatment - with the reduction of saliva, you need to be careful about thrush and cavities. I'd suggest a few teaspoons of yogurt a day to at least get a headsup on it. Keep your sugary foods down to a minimum. Dentist/hygienist visits are important - sometimes you don't feel the cavity beginning - they can catch it early and help keep your original teeth for as long as possible. Any chips in teeth can be repaired with a bonding process.

There are several prescription drugs that supposedly help with dry mouth - Evoxac. Salagen, Caphoso. Mucinex may also help since it contains a coating agent - this can be bought OTC. Speak to your doc about the options - one of these might work for you.

 

A fellow veteran from another list who's also on this list recommends the following mouth rinse:

1 cup water, 1/4 tsp. salt, 1/8 tsp baking soda.  Do this several times a day.

As in all things related to the side effects of treatment - stay flexible, adapt, innovate. The solution that works for you sometimes has to be found thru trial and error. The way your body responds is unique to you.

Hope you recover quickly!

- Jeff

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