Saliva question

Billie67

Hello All,
I have a question for anyone who can answer. I am 8 weeks out today from my last rad. Up until a few days ago I had very little saliva but my mouth wasn't desert dry like it sometimes is in the morning. A few days ago I started feeling super dry. For instance I couldn't even moisten the seal on an envelope by licking it. Feels like Ive stuffed my mouth with cotton. Does anyone know if it gets worse after this amount of time since rads? Do these things come and go? Will I get any improvement and if so, about when do we see this happen?
I keep trying to figure out if it's something I'm eating (don't get too excited...nibbling is more like it) but my foods change a lot!! I'm always trying to see what tastes real to me and what tastes like something grossly saturated in vinegar, that seems to be what I taste in many foods especially sweet foods like cake, pie, ice crewmm
Thanks in advance,
Billie

phrannie51

I think it comes and goes...
part of it is what you might be eating. Anything with salt in it will dry your mouth out more...like I drank some canned broth, and my mouth was desert dry for the whole evening...also, I try to be concious of my breathing. Mouth breathing drys me out horrible, but many times I'm just not paying attention or my nose is plugged.

Generally tho...my expectations are that my mouth will go thru times of ultra dry, and times when I'm asking myself..."oooo....is this it? Am I getting saliva??"...only to be disappointed 3 days later.

p

Billie67

phrannie51 said:

I think it comes and goes...
part of it is what you might be eating. Anything with salt in it will dry your mouth out more...like I drank some canned broth, and my mouth was desert dry for the whole evening...also, I try to be concious of my breathing. Mouth breathing drys me out horrible, but many times I'm just not paying attention or my nose is plugged.

Generally tho...my expectations are that my mouth will go thru times of ultra dry, and times when I'm asking myself..."oooo....is this it? Am I getting saliva??"...only to be disappointed 3 days later.

p

Thanks Phrannie
Good to know I'm not alone in this. I will try to focus on my breathing and not eating too much salt. I don't really salt my food because I was so disgusted by that overly salty period I went thru while on rads. That was so gross even water tasted like the ocean. Anyway I'll watch the salt intake.
And I guess I'll also expect these changes then....dang it!
Have a great weekend.
Billie

longtermsurvivor

it certainly comes and goes for me
and the good news about taste is that you have any taste at all now, it will come back. Doesnt matter that it is all distorted at the moment.

best

Pat

Tonsil Dad

longtermsurvivor said:

it certainly comes and goes for me
and the good news about taste is that you have any taste at all now, it will come back. Doesnt matter that it is all distorted at the moment.

best

Pat

Comes and goes.
Hi Billie, I'm 4 months post treatment and my taste is
on -off. I can taste most foods on the first bite and then
it goes away on the next bites, just like the drinks I can
taste the first sip then that goes away, hopefuly with time
it will stay around. As for dry mouth mine seems to have got
worse over time, I too couldn't lick an envelope and I think
the sand fairy shovells sand in my mouth when I'm sleeping
but hopefuly that too will come back eventualy. Remember our
bodies took a lot of changes with treatment and it will take
time to get back to our 'new normal'.

God bless
Tonsil dad,

Dan.

Sam999

Tonsil Dad said:

Comes and goes.
Hi Billie, I'm 4 months post treatment and my taste is
on -off. I can taste most foods on the first bite and then
it goes away on the next bites, just like the drinks I can
taste the first sip then that goes away, hopefuly with time
it will stay around. As for dry mouth mine seems to have got
worse over time, I too couldn't lick an envelope and I think
the sand fairy shovells sand in my mouth when I'm sleeping
but hopefuly that too will come back eventualy. Remember our
bodies took a lot of changes with treatment and it will take
time to get back to our 'new normal'.

God bless
Tonsil dad,

Dan.

I am 7 weeks post rads and
I am 7 weeks post rads and same thing! Dryness goes on and off.

I have now very little mucuos, dont know if that adds to throat dryness. I also ended up throwing up sometimes like we did two weeks after rads on mucous! So i guess we have to be just patient.

I will also try to watch what i eat and see if that has any affect.

I am able to eat most fruits okay. I too am trying diffrent things.

Sam

Billie67

longtermsurvivor said:

it certainly comes and goes for me
and the good news about taste is that you have any taste at all now, it will come back. Doesnt matter that it is all distorted at the moment.

best

Pat

Thanks Pat, that makes me
Thanks Pat, that makes me feel better.

Billie67

Sam999 said:

I am 7 weeks post rads and
I am 7 weeks post rads and same thing! Dryness goes on and off.

I have now very little mucuos, dont know if that adds to throat dryness. I also ended up throwing up sometimes like we did two weeks after rads on mucous! So i guess we have to be just patient.

I will also try to watch what i eat and see if that has any affect.

I am able to eat most fruits okay. I too am trying diffrent things.

Sam

Dan and Sam
Thank you both so much for your input, I really appreciate it. Hopefully we will all get some saliva soon and at the very least be able to lick an envelope.
Billie

CivilMatt

good saliva question
Hi Billie67,

My Saliva started out kind of like yours except I could lick one envelope. I use to have dry, dry, dry morning mouth, but since I use Xylimelts I wake up with moist mouth (go figure). In the whole scheme of things, the saliva and taste are getting better. Last night I tried some Yakisoba Cheddar Cheese flavor noodles and I rated it a 3 on my taste scale. I tried them because they are similar to Mac-n –cheese and Phrannie said that was good. Today I (estimate)
I can lick from 10 to 15 envelopes at a time, so I guess my spitter is getting better.

One of your fellow H&N partners.

Best,

Matt

21 weeks post

Billie67

CivilMatt said:

good saliva question
Hi Billie67,

My Saliva started out kind of like yours except I could lick one envelope. I use to have dry, dry, dry morning mouth, but since I use Xylimelts I wake up with moist mouth (go figure). In the whole scheme of things, the saliva and taste are getting better. Last night I tried some Yakisoba Cheddar Cheese flavor noodles and I rated it a 3 on my taste scale. I tried them because they are similar to Mac-n –cheese and Phrannie said that was good. Today I (estimate)
I can lick from 10 to 15 envelopes at a time, so I guess my spitter is getting better.

One of your fellow H&N partners.

Best,

Matt

21 weeks post

Thanks Matt
You give me lots of hope. I'm not sure what xylimelts are but I'm going to look into it. I've been given tons of stuff to try but so far nothing seems to want to work for me. Licking 10-15 envelopes, wow I hope I can get to that point. I'm glad your taste is getting better too, before long you'll be back to your old Self :-)
Thank you for your reply, you've been really helpful.
Billie

D Lewis

Still not much saliva here
Hi Billie

I'm 2 years, 3 months out from end of treatment for Base of Tongue SCC. I had mets to lymph nodes on both sides so they blasted me with everything they had. Cooked my salivary glands. Taste and eating came back pretty quick, but saliva has not yet recovered, and it may not ever come back. During the first few weeks after treatment, it did seem to worsen beyond what I had experienced during treatment.

I pretty much have no spit, no snot and no tears. Also, no nose hairs; nobody warned me that these might not grow back...

That being said, I can eat most things now except dry meats. My taste for sugar never really came back, but I do enjoy chocolate. Still love sourdough breads, and I can get them down with butter or olive oil if I take small bites.

Deb (still taking a sip of water to lick an envelope)

Billie67

D Lewis said:

Still not much saliva here
Hi Billie

I'm 2 years, 3 months out from end of treatment for Base of Tongue SCC. I had mets to lymph nodes on both sides so they blasted me with everything they had. Cooked my salivary glands. Taste and eating came back pretty quick, but saliva has not yet recovered, and it may not ever come back. During the first few weeks after treatment, it did seem to worsen beyond what I had experienced during treatment.

I pretty much have no spit, no snot and no tears. Also, no nose hairs; nobody warned me that these might not grow back...

That being said, I can eat most things now except dry meats. My taste for sugar never really came back, but I do enjoy chocolate. Still love sourdough breads, and I can get them down with butter or olive oil if I take small bites.

Deb (still taking a sip of water to lick an envelope)

Deb
I'm sorry yours hasn't returned, no snot or tears huh? That's really dry, they zapped you good. So funny how I took saliva for granted before all of this, never giving it much thought at all. When I was going thru all of my consults they kept saying, "you might get a little dry mouth" HA I wish people would just be honest and say it like it is. Anyway, I'm glad you can eat most things and even bread! I can't wait to eat bread and be able to get it down without panicking that it's going to choke me. Sourdough is my favorite too. As far as sweet goes, I've never been a huge sweet tooth but would enjoy the occasional treat but now it tastes horrible. I really wish it didn't because I'm trying to gain back my weight and I'm sure a cupcake here and there would help with that :-)
Thanks so much for telling me your story....I just hope you'll recover some saliva even at this point in the game.
Take care,
Billie

Billie67

Billie67 said:

Deb
I'm sorry yours hasn't returned, no snot or tears huh? That's really dry, they zapped you good. So funny how I took saliva for granted before all of this, never giving it much thought at all. When I was going thru all of my consults they kept saying, "you might get a little dry mouth" HA I wish people would just be honest and say it like it is. Anyway, I'm glad you can eat most things and even bread! I can't wait to eat bread and be able to get it down without panicking that it's going to choke me. Sourdough is my favorite too. As far as sweet goes, I've never been a huge sweet tooth but would enjoy the occasional treat but now it tastes horrible. I really wish it didn't because I'm trying to gain back my weight and I'm sure a cupcake here and there would help with that :-)
Thanks so much for telling me your story....I just hope you'll recover some saliva even at this point in the game.
Take care,
Billie

Matt
Matt I researched it and ordered the Xylimelts...can't wait to try it. I got the plain I think? Wasn't sure just how Monty the mint was and mint seems to still taste funny to me. Thanks so much for the advice
Bille

CivilMatt

Billie67 said:

Matt
Matt I researched it and ordered the Xylimelts...can't wait to try it. I got the plain I think? Wasn't sure just how Monty the mint was and mint seems to still taste funny to me. Thanks so much for the advice
Bille

worth a try
Hi Billie,

They work for me, I will be putting two in my mouth in a couple of minutes. Before I used them I would wake up with (like I said) dry, dry, dry mouth, as we all do. Now, when I wake up it is no longer dry, not perfect, but much better. They are funky; you find a spot in your mouth to dissolve over a few hours. The mint flavor, I don’t notice too much. If they did not help me I wouldn’t be using or endorsing them. Good Luck

By the way, I drink lots of water right up until I go to bed; if I wake up I take a drink. I figure drinking gallons of water and having to pee are just part of being a H&N survivor.

Best,

Matt