Saliva Glands
Comments
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spitGreend said:Spit
I wish I could spit. Oh well maybe I'll just drink a beer instead.
Guess my priorities are all messsed up.
:>)
Okay, that made me laugh out loud. I am not a beer drinker, but I wish I could have a glass of wine. Or aka in an inside joke with my step mom, "coping juice".0 -
spit
Greed, that made me laugh out loud. I am not a beer drinker, but I do wish I could have a glass of wine. Or as my step mom and I call it, in an iside joke, 'coping juice', for when we have company that we would rather not have.0 -
I'd do anything for a COKE!sweetblood22 said:spit
Greed, that made me laugh out loud. I am not a beer drinker, but I do wish I could have a glass of wine. Or as my step mom and I call it, in an iside joke, 'coping juice', for when we have company that we would rather not have.
I'd do anything for a COKE! Since my tastes have changed, my favorite drink tastes nasty. So I'm officially caffine-free...
My sense of smell is just fine, which actually adds to the torture, it's just taste. Since I posted earlier, it has improved a little. To add insult to the Coke, chocolate also tastes horrible.
The side effects are similar, but maybe a little different since I did neutrons instead of standard radiation. I don't have a problem with mucus, but my mouth is so dry in the mornings. Water, water, water. I had quite the radiation burn on the side of my face, but it's fading. I used Mary Kay intense moisurizer and it worked wonders. It's still tender but much less red. I just wish my hair would quit falling out! I've got a fabulous bald spot under my hair. I don't even care if it grows back (it's covered, although makes for a lopsided pony tail), I'm tired of it falling out! I sweep up tons of hair, pull it out of the shower... Ugh. And my scalp is sore from the hair loss.
But I'm feeling so much better than I was! Time is a good friend.0 -
Time is Your FriendMelissa_Mae said:I'd do anything for a COKE!
I'd do anything for a COKE! Since my tastes have changed, my favorite drink tastes nasty. So I'm officially caffine-free...
My sense of smell is just fine, which actually adds to the torture, it's just taste. Since I posted earlier, it has improved a little. To add insult to the Coke, chocolate also tastes horrible.
The side effects are similar, but maybe a little different since I did neutrons instead of standard radiation. I don't have a problem with mucus, but my mouth is so dry in the mornings. Water, water, water. I had quite the radiation burn on the side of my face, but it's fading. I used Mary Kay intense moisurizer and it worked wonders. It's still tender but much less red. I just wish my hair would quit falling out! I've got a fabulous bald spot under my hair. I don't even care if it grows back (it's covered, although makes for a lopsided pony tail), I'm tired of it falling out! I sweep up tons of hair, pull it out of the shower... Ugh. And my scalp is sore from the hair loss.
But I'm feeling so much better than I was! Time is a good friend.
Melissa,
Hang in there, the coke does suck in taste, they told me the coke classic is good for reducing phlem...it didn't work. lol, I lost some hair on the back of my head, not too bad,my hair changed a mossy feel, My problem was coffee and chocolate, 2 things I loved, and it all came to an end after 35 years, I hate Coffee and Chocolate is so bitter, it's nasty, slowly reaginging teh taste buds back, and struggle to get past the soreness in my throat, ouch. My neck too teh hit with radiation, what a mess and hurt. it's healed up and feels like i had a skin graft. But you are right....I would love to drink a Coke..and have it taste like a Coke..LOL, and have it nice and cold, where it wouldn't burn my throat....theres day ahead0 -
Time is Your FriendMelissa_Mae said:I'd do anything for a COKE!
I'd do anything for a COKE! Since my tastes have changed, my favorite drink tastes nasty. So I'm officially caffine-free...
My sense of smell is just fine, which actually adds to the torture, it's just taste. Since I posted earlier, it has improved a little. To add insult to the Coke, chocolate also tastes horrible.
The side effects are similar, but maybe a little different since I did neutrons instead of standard radiation. I don't have a problem with mucus, but my mouth is so dry in the mornings. Water, water, water. I had quite the radiation burn on the side of my face, but it's fading. I used Mary Kay intense moisurizer and it worked wonders. It's still tender but much less red. I just wish my hair would quit falling out! I've got a fabulous bald spot under my hair. I don't even care if it grows back (it's covered, although makes for a lopsided pony tail), I'm tired of it falling out! I sweep up tons of hair, pull it out of the shower... Ugh. And my scalp is sore from the hair loss.
But I'm feeling so much better than I was! Time is a good friend.
Melissa,
Hang in there, the coke does suck in taste, they told me the coke classic is good for reducing phlem...it didn't work. lol, I lost some hair on the back of my head, not too bad,my hair changed a mossy feel, My problem was coffee and chocolate, 2 things I loved, and it all came to an end after 35 years, I hate Coffee and Chocolate is so bitter, it's nasty, slowly reaginging teh taste buds back, and struggle to get past the soreness in my throat, ouch. My neck too teh hit with radiation, what a mess and hurt. it's healed up and feels like i had a skin graft. But you are right....I would love to drink a Coke..and have it taste like a Coke..LOL, and have it nice and cold, where it wouldn't burn my throat....theres day ahead0 -
Time is Your FriendMelissa_Mae said:I'd do anything for a COKE!
I'd do anything for a COKE! Since my tastes have changed, my favorite drink tastes nasty. So I'm officially caffine-free...
My sense of smell is just fine, which actually adds to the torture, it's just taste. Since I posted earlier, it has improved a little. To add insult to the Coke, chocolate also tastes horrible.
The side effects are similar, but maybe a little different since I did neutrons instead of standard radiation. I don't have a problem with mucus, but my mouth is so dry in the mornings. Water, water, water. I had quite the radiation burn on the side of my face, but it's fading. I used Mary Kay intense moisurizer and it worked wonders. It's still tender but much less red. I just wish my hair would quit falling out! I've got a fabulous bald spot under my hair. I don't even care if it grows back (it's covered, although makes for a lopsided pony tail), I'm tired of it falling out! I sweep up tons of hair, pull it out of the shower... Ugh. And my scalp is sore from the hair loss.
But I'm feeling so much better than I was! Time is a good friend.
Melissa,
Hang in there, the coke does suck in taste, they told me the coke classic is good for reducing phlem...it didn't work. lol, I lost some hair on the back of my head, not too bad,my hair changed a mossy feel, My problem was coffee and chocolate, 2 things I loved, and it all came to an end after 35 years, I hate Coffee and Chocolate is so bitter, it's nasty, slowly reaginging teh taste buds back, and struggle to get past the soreness in my throat, ouch. My neck too teh hit with radiation, what a mess and hurt. it's healed up and feels like i had a skin graft. But you are right....I would love to drink a Coke..and have it taste like a Coke..LOL, and have it nice and cold, where it wouldn't burn my throat....theres day ahead0 -
Coke!Melissa_Mae said:I'd do anything for a COKE!
I'd do anything for a COKE! Since my tastes have changed, my favorite drink tastes nasty. So I'm officially caffine-free...
My sense of smell is just fine, which actually adds to the torture, it's just taste. Since I posted earlier, it has improved a little. To add insult to the Coke, chocolate also tastes horrible.
The side effects are similar, but maybe a little different since I did neutrons instead of standard radiation. I don't have a problem with mucus, but my mouth is so dry in the mornings. Water, water, water. I had quite the radiation burn on the side of my face, but it's fading. I used Mary Kay intense moisurizer and it worked wonders. It's still tender but much less red. I just wish my hair would quit falling out! I've got a fabulous bald spot under my hair. I don't even care if it grows back (it's covered, although makes for a lopsided pony tail), I'm tired of it falling out! I sweep up tons of hair, pull it out of the shower... Ugh. And my scalp is sore from the hair loss.
But I'm feeling so much better than I was! Time is a good friend.
Hi Melissa, can’t remember what a coke taste like anymore, I was a Diet Coke-aholic at one time, the stuff I find I like now is juice. On the chocolate; that will come back and you will be able to taste it again. But if you are like me you will only be able to taste anything sweet once or twice before it is gone and you will have to wait a ½ hour or so before you can taste it again. Time is a great healer and we adjust to our new normal.
Grest looking Picture
Take care and may God watch over you0 -
Coke and TasteHondo said:Coke!
Hi Melissa, can’t remember what a coke taste like anymore, I was a Diet Coke-aholic at one time, the stuff I find I like now is juice. On the chocolate; that will come back and you will be able to taste it again. But if you are like me you will only be able to taste anything sweet once or twice before it is gone and you will have to wait a ½ hour or so before you can taste it again. Time is a great healer and we adjust to our new normal.
Grest looking Picture
Take care and may God watch over you
Great thread Tim (Hondo). I would have liked to post more, but I cannot remember as much. You reminded me when I too could taste something, but after one or two bites, it would disappear.
Melissa, hang on. Before you know it, your taste will be back. Unfortunately for me, I do not think it is back a hundred percent. Do not worry because from what I have been reading in this forum, the large majority have their full taste back. I also am reminded of that burning sensation when you swallow with that raw throat. That too disappeared.
Having lost a lot of weight, I had to force myself to eat. I know that for the first month after treatment, I drank a lot of Ensure. With the taste problem, it tasted terrible. I finally settled on Boost.
Remain positive and you will heal.0 -
Taste!Melissa_Mae said:I'd do anything for a COKE!
I'd do anything for a COKE! Since my tastes have changed, my favorite drink tastes nasty. So I'm officially caffine-free...
My sense of smell is just fine, which actually adds to the torture, it's just taste. Since I posted earlier, it has improved a little. To add insult to the Coke, chocolate also tastes horrible.
The side effects are similar, but maybe a little different since I did neutrons instead of standard radiation. I don't have a problem with mucus, but my mouth is so dry in the mornings. Water, water, water. I had quite the radiation burn on the side of my face, but it's fading. I used Mary Kay intense moisurizer and it worked wonders. It's still tender but much less red. I just wish my hair would quit falling out! I've got a fabulous bald spot under my hair. I don't even care if it grows back (it's covered, although makes for a lopsided pony tail), I'm tired of it falling out! I sweep up tons of hair, pull it out of the shower... Ugh. And my scalp is sore from the hair loss.
But I'm feeling so much better than I was! Time is a good friend.
Dear Melissa,
Things do taste so ODD..and they smell fine!! You are right, it is driving me nuts..chocolate burns, etc etc.. I might try the Mary Kay cream, so far I have aquaphor, silvadene, aloe vera, desitin today and nothing works too well. Had you tried any of those as well?
Thanks for sharing..
Stacey0 -
how long does it take???Hondo said:Coke!
Hi Melissa, can’t remember what a coke taste like anymore, I was a Diet Coke-aholic at one time, the stuff I find I like now is juice. On the chocolate; that will come back and you will be able to taste it again. But if you are like me you will only be able to taste anything sweet once or twice before it is gone and you will have to wait a ½ hour or so before you can taste it again. Time is a great healer and we adjust to our new normal.
Grest looking Picture
Take care and may God watch over you
hi Hondo, so glad to have found this support. I had radiation - 35 treatments, finished in December. I am really battling to eat, no saliva?0 -
Welcomeneenobs said:how long does it take???
hi Hondo, so glad to have found this support. I had radiation - 35 treatments, finished in December. I am really battling to eat, no saliva?
neenobs,
Glad you found your way here. The people here have really helped me a lot. As for me, just had my 1st week of rads and chemo. so Just wanted to welcome you here. Ask away and the people here will help you, I promise!!
Best,
Steve0 -
Cheated by the Smellstaceya said:Taste!
Dear Melissa,
Things do taste so ODD..and they smell fine!! You are right, it is driving me nuts..chocolate burns, etc etc.. I might try the Mary Kay cream, so far I have aquaphor, silvadene, aloe vera, desitin today and nothing works too well. Had you tried any of those as well?
Thanks for sharing..
Stacey
I know what you mean - it smells so good, then I'm bitter when I put it in my mouth, and there's nothing, or something weird.
I'm using biafine and aloe vera now (sitting here with cool washcloth around my neck). Dr. told me to switch from aquaphor, since it probably wouldn't do much - said I needed stuff to sink in, not sit on top. Fingers crossed.0 -
SmellPam M said:Cheated by the Smell
I know what you mean - it smells so good, then I'm bitter when I put it in my mouth, and there's nothing, or something weird.
I'm using biafine and aloe vera now (sitting here with cool washcloth around my neck). Dr. told me to switch from aquaphor, since it probably wouldn't do much - said I needed stuff to sink in, not sit on top. Fingers crossed.
Pan our bodies are a remarkable piece of machinery when one part is damaged the other parts increase to take up for the slack, that is one reason when we loose our taste things smell so much better and taste sucks.
Take care0 -
Saliva gland and eye problems
Just getting started into this adventure and would like to asked. I thought I read somewhere (I've read so much) that they can give you a shot to protect the saliva glands during radiation. Is that not true. And also, for the ones that had nasopharynx cancer treatment, has anybody had any eye problems due to the radiation.0 -
AmifostineCoupe35 said:Saliva gland and eye problems
Just getting started into this adventure and would like to asked. I thought I read somewhere (I've read so much) that they can give you a shot to protect the saliva glands during radiation. Is that not true. And also, for the ones that had nasopharynx cancer treatment, has anybody had any eye problems due to the radiation.
Yes, I am receiving this, it is called amifostine and my Radiation oncologist swears by it. Be advised, there are varying opinions about this and also side effects. But there are a lot of side effects to all the treatments but one side effect that struck me.... A great chance of being cured!!!! I have no info on eye problems, sorry. Good job keep posting!!
Regards,
Steve0 -
Shots for Saliva GlandsCoupe35 said:Saliva gland and eye problems
Just getting started into this adventure and would like to asked. I thought I read somewhere (I've read so much) that they can give you a shot to protect the saliva glands during radiation. Is that not true. And also, for the ones that had nasopharynx cancer treatment, has anybody had any eye problems due to the radiation.
the Amiphostine (or Ethyol) shots to help protect saliva glands get mixed reviews. I spoke with 2 drs about it; one was against the drug, saying there was not clear evidence that it didn't protect cancer cells and not clear evidence it helped saliva glands - the other doctor said the jury was out, and there were no guarantees but he believed the shots were effective part of the time. I thought it was worth the risk, and went for the shots. I got them every day of treatment, until I developed an allergic reaction to the drug. Just realized I don't know how many shots I got - 13, I think.0 -
amiphostineCoupe35 said:Saliva gland and eye problems
Just getting started into this adventure and would like to asked. I thought I read somewhere (I've read so much) that they can give you a shot to protect the saliva glands during radiation. Is that not true. And also, for the ones that had nasopharynx cancer treatment, has anybody had any eye problems due to the radiation.
I took the amiphostine for my first treatment in 2003 but did not take it on the second treatment in 2004, I did not see any different while in treatment but now after 5 years I can say I have more saliva then most people who have only done treatment one time. I have the dry mouth and need water to eat with, but I can sleep all night with our getting up every hour to take a drink of water, also if you give me 5 min I can work-up enough saliva to spit. lol
I can’t say yes it does or no it don’t work but for some one who has as much radiation as I have had I should have no saliva glands at all. So may be it does work.0 -
is there anything one can do with the flem & smell?wifeforlife said:Junk
I have been reading these posts to get answers to questions that have come up thoughout my husbands treatments. As with a lot of you he has st. IV SCC we have finished having radiation, chemo and removal of lymphnode.
We are experiencing many of the symptoms you discuss on here... and it is actually comforting to know that others are experiencing the same things... (i don't mean that I am glad you are/have gone through it)
Something we are dealing with that I haven't been able to find any info on and I am slightly embarresed to bring it up if we are the only ones experiencing it....but here goes..
The stuff "junk" coming out of my husbands mouth smells so bad it is almost enough to make me gag. If you have him in the car with you and he spitts up ..you can barely stand to be in the car. He is brushing, rinsing with Paroxide, magic mouth wash... has anyone had any experience like this?
Oh my gosh as we speak we are spitting up glob balls! It is so dicusting and the smell! I so wish someone had a solution for the horrible flem that goes with this! Any solutionsLet us know if there is something anyone can do for this! Thanks Joe0 -
Hi neenobsneenobs said:how long does it take???
hi Hondo, so glad to have found this support. I had radiation - 35 treatments, finished in December. I am really battling to eat, no saliva?
Welcome my friend; we are all different and the affects of the treatment sometime takes longer to ware off for some, but for the most part between 1 to 3 months before you start to taste. On your Saliva there are a few good sprays that I recommend trying; one is biotene Moisturizing Mouth Spray that you can get at Walgreens, the other and this is the one I use is Stoppers 4 Dry Mouth Spray; I get it on line at www.drugstore.com. I hope some of this helps you and please keep posting and letting us know how you are doing.0 -
Amifostine AlsoCoupe35 said:Saliva gland and eye problems
Just getting started into this adventure and would like to asked. I thought I read somewhere (I've read so much) that they can give you a shot to protect the saliva glands during radiation. Is that not true. And also, for the ones that had nasopharynx cancer treatment, has anybody had any eye problems due to the radiation.
I also had the shots each day before radiation. My radiology doctor didn't really mention them and didn't have much to say. My chemo doctor prescribed them. She felt that they did preserve some salivary function but also she felt that they greatly relieved the chances of getting thick ropey phlegm during and after treatment.
I'm not sure if that is something that one gets by not having the shots, I didn't get that. I do have some salivary function, nothing like before, but it still seems to be improving seven months post treatment.
I could only take about 30 of the shots out of the 35 radiation exposures. I started getting really sever fever swings raniging from 96+ - 103 degrees.
My injections were in my stomach each day about 25 minutes before the radiation. It would itch and get red and blotchy each day, then dry scaley patches later.
John0
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