Saliva Glands Slow to Heal

TraceyEllyn

Hello everyone,

It's been a few months since I've been onboard.

First of all I just want to say that you all are AMAZING! The sincere love and concern that is expressed is so welcomed and appreciated! Thanks for being you!

My husband just finished his second PET scan after treatment on July 1st, and his scan is clear! Praise God! His feeding tube was removed the end of May and we made a major move June 3rd. Ye Haw! Anyway he still drinks a pitcher of water with every meal. He is over four months out of treatment and still no saliva glands working. How long does it take for them to kick back in and start up again? 

Thanks and love to all!

Tracey

KTeacher

Sorry

I believe that those salivary glands that we would all like to have back, were cooked with radiation.  Liquid with meals is just part of the routine for us now.  It gets a little bit better with time but he will never eat a meal or for that matter have a snack without water, ice tea or milk.  There are many foods that I would love to have again but I know what a problem they would cause, just happy to be able to eat.

CivilMatt

spit on

Tracey.

Tapping the H&N reservoir for some spit on saliva (if my Mother could hear me).

Even though I am far from throwing caution to the wind and eating without liquid.  I continue (at 2y+) to see improvements.  I sometimes carry my water bottle and don’t open it.  I am far removed from old normal, but do the best that I can and plan ahead.

I can sleep through the night, but choose to take 2 Xylimelt tabs, I think it helps my teeth.

Good luck,

Matt

PS my spit is extremely thick

Roar

Two years in December for me

Like Matt says- it's a slow process- still go to bed every night with my water beside me - still spitting up sticky stuff especially in the morning after I wake up and after meals. Taste is still not the same as before but again very slowy it continues to get better- forget about spice food although I can now tolerate a little hotness but not much - can't eat without water- but from what I read and hear I am one of the lucky ones so far. I remember my last treatment 12/10/12 - I thought I would be back to normal by my birthday in February - NOT- just hang in there and do what you have to do - as far as getting a kick started - on the grand scale 4 months is still I the infancy stage- but everyone is different- I have a friend who went through the same treatment as me and he says he has no side effects- so don't knock yourself out trying to figure it out - just be thankful he is all clear and take one day at a time- you made it through the tough part. The first year I battled the fatigue that was unbearable, coupled with ringing In the ears,neuropathy and whatever they call it when the fluid don't drain because you had lymph nodes removed. All of which has gotten substantially better over time- except the hearing thing. All I can add is make sure he takes care of the dental hygiene religiously if he is having saliver issues as his teeth will rot out if he don't 

good luck and keep fighting

Ralph

 

debbiejeanne

i seem to be different than

i seem to be different than most.  i never had chemo, only 35 rads but my saliva is back and has been since a few months after tx.  at times, i now have to much and have to spit.  i eat my meals without drinking at all.  i don't know if not having chemo makes this difference or not.  praying your husband's gets better.  but even if it doesn't, if he can eat, he is lucky!  there are several here who can no longer eat at all.  i cannot imagine going the rest of my life unable to eat...  :0(

God bless you,

dj

KB56

Saliva

Tracey, I'm 14 months out and take the saliva stimulating pill 3x per day (pilocarpine sp?) and still struggle with it. One of the best things I have found us Spry gum.  It has the Xylitol which seems t help more than anything.  Like a lot of things,I get them on Amazon and always carry a little bag around with me as they come 600 to a jar.   

Like most people here, I'm always the last one finished eating a meal and it takes quite a bit of water.    It seems to have plateaued and maybe I'm back to 60-70% of where I was before but I'm not really sure how to measure it.   but honestly, it's something I can deal with and do pretty much whatever I want so all is good!

if he hasn't tried the gum, it helps me more than anything.  I know a lot of people don't like to chew gum but it makes a big difference and supposedly helps your teeth at the same time. He should get better from 4 months so he should see continued improvement over the next few months    

 

good luck,

Keith

phrannie51

Me too....on all the above....

improvement for spit is slow.  I have water at my side for any meal....but have found in the last year that veggies can be eaten without a side of water.  I'm still a big soup eater, and when we have soup I can keep up with the best eaters in town....anything else, tho....I'm the last one done. 

I could harldly wait to get the PEG tube gone....I'm so glad to hear that he's eating enough to get his out!  I had to cheat, and wear steel toed work boots to a weigh in to get mine pulled.

p

thennies61

phrannie51 said:

Me too....on all the above....

improvement for spit is slow.  I have water at my side for any meal....but have found in the last year that veggies can be eaten without a side of water.  I'm still a big soup eater, and when we have soup I can keep up with the best eaters in town....anything else, tho....I'm the last one done. 

I could harldly wait to get the PEG tube gone....I'm so glad to hear that he's eating enough to get his out!  I had to cheat, and wear steel toed work boots to a weigh in to get mine pulled.

p

Think I'm alittle differentas

Think I'm alittle differentas to the slivia.I seem to have to much.Even after out od radiation my mouth still fills with slivia.Not as much as before but still does.My doctor said that the more I swallow the better it will it.It seems worse the more I talk and I start to slobbor some.I gained enough weight to have the peg tube removed but he wants to wait until I have my pet scan on the 4th.He seems to like to leave things in just to be safe.

hrowe

It is a long process for

It is a long process for saliva and taste to return. When I finished rads and was at least 6 months out I couldn't take a bite of food without a sip of water. I went through several bottles a day. I finished rads June 2012 and now I can slug down popcorn in several bites before needing a sip. At work I only go through two bottles of water in 8 hours. This is including snacks and lunch.

It wasn't a linear process. Some months I could see a big change in saliva and taste and then it would level out for a few months with no change. It was frustrating! Then, it would change for the better. Give it time. It WILL get much better

 

 

hwt

hrowe said:

It is a long process for

It is a long process for saliva and taste to return. When I finished rads and was at least 6 months out I couldn't take a bite of food without a sip of water. I went through several bottles a day. I finished rads June 2012 and now I can slug down popcorn in several bites before needing a sip. At work I only go through two bottles of water in 8 hours. This is including snacks and lunch.

It wasn't a linear process. Some months I could see a big change in saliva and taste and then it would level out for a few months with no change. It was frustrating! Then, it would change for the better. Give it time. It WILL get much better

 

 

yes, long process

2 1/2 years out and still seeing improvement 

pilotbob3

Just chiming in here, about

Just chiming in here, about 16 monhts out of treatment, 8 weeks of Erbitux an 35 rad sessions. Still takes me a couple of bottles of water to get through a meal, but food is slowly tasting better. Same as most, I was not able to eat spicy foods at all for a year, but slowly being able to take a little spice.

I can feel my saliva situation getting better at a non-linear rate, and very slowly over time. For me, a big problem was the feeling of my mouth being "coated", almost like covered with Crisco. This too is slowly getting better.

Wish your husband the best of luck, and just keep optimistic that time will heal this problem for him.

TraceyEllyn

Thanks everyone!

Thanks everyone!

I'll difinitely get some of the gum. And thanks for the reminder to keep his care up on the teeth. My husband has his taste back, he says completely. He's made the error of attempting to eat some spicey foods. Yes I know what you're thinking. Ouch! It really burned. However all we know is trial and error at this point. We went by suggestion of the dietician to Golden Corral Restaurant to try foods which actually gave me some help on what I could fix him to eat. So far Chicken Alfredo, Puertican Stew and Chicken Low Mien are the best. 

Thank you for all your support! You all are a blessing!

Tracey

debbiejeanne

TraceyEllyn said:

Thanks everyone!

Thanks everyone!

I'll difinitely get some of the gum. And thanks for the reminder to keep his care up on the teeth. My husband has his taste back, he says completely. He's made the error of attempting to eat some spicey foods. Yes I know what you're thinking. Ouch! It really burned. However all we know is trial and error at this point. We went by suggestion of the dietician to Golden Corral Restaurant to try foods which actually gave me some help on what I could fix him to eat. So far Chicken Alfredo, Puertican Stew and Chicken Low Mien are the best. 

Thank you for all your support! You all are a blessing!

Tracey

wow, that's fantastic that

wow, that's fantastic that his taste is back!  i'm so happy for him being able to eat and actually taste it.  many learned about the spicy food the hard way :0( but like you said, you learn from trial and error.  i hope he continues to find foods he likes and can eat.  you don't realize how much you enjoy eating and what an important part of your day it is until you aren't able to eat.  so happy for him.

God bless you,

dj