Saliva Glands

saliva
I think I am slowly getting some saliva back, but it is awful when you have a dry mouth. I simply use biotene mouthwash, in the morning, at lunchtime and evening, when I wake up during the night with dry mouth I use it again. If the mouth is not too dry I swish and swallow flavored water. I am never far away from a water bottle, drink about two quarts a day.

Hondo said:

Hi Denistd,
Biotene makes a mouth moisturizing spray that is good to use during the day or at night when trying to sleep, it help to keep your mouth from becoming to dry. Another good one is stoppers4 Dry Mouth Spray I use both of them and can get 6 to 8 hour sleep at night, but I do have 50% of my saliva glands working so that too helps.

Hope this helps you some

Hondo - tips for dry mouth
Hondo,
What is Sea Mineral Boost, and where do you buy the Stoppers stuff?
Also, have you found anything other that water that you can drink that tastes ok. Bob does drink a little coffee every morning, plenty of water, and also drinks milk (especially chocolate), but would love something with a bit of flavor, and diet soda is not working at all. Any tips would be appreciated.
Phyllis

many thanks
Thank you so much for starting this thread. I do not want to sound like a whiney baby, but since you started this in regard to my saliva issue, i will go into a bit more info. One of my issues is that everything still burns my mouth. Water burns. I have tried some Biotene products but hurts my mouth to the point of making my eyes water and I end up with my nose running and eyes tearing up from the pain.

Even things that you would normally think would be soft and easy to eat are not. I keep trying things, but I am not finding much of anything that does not hurt. Even mashed potatoes feels like fine grit sandpaper. I am sure you are all well aware of what it's like. Sometimes people ask me what the pain is like. I sort of think it's like when you scaled your tongue on boiling coffee, or lava hot cheese, but waayyy worse.

This has been the hardest thing for me. It is hard to explain to people who have not been thru this. they just "don't get it." I am crying on a weekly basis about the frustration of missing food, and eating and sitting at the table eating with my family.

I had to have two dillitations to stretch my esophogus, I realize I am lucky to even be able to swallow some bites of some food now. I could not swallow food at all over Christmas. We had some relatives up that had not seen me in a while and wanted to know why I was not going to sit at the table for Christmas dinner. Their veiw was that I "should be polite" and at least sit there and catch up. I almost came unglued. I am glad that my dad handled it for me because I thought the top of my head was going to pop off. He had to explain to them again that I had not eaten ANY food since 4-20-09. There were times when I could smell my gram toasting a bagel, and I would just cry.

I am a little embarrassed to type this, but honestly, I have not really ever cried about my cancer or getting diagnosed. I am struggling more with this food thing. It is killing me that I cannnot eat normally. I am already on Lexapro, and I don't believe that I am experiencing depression. Just intense frustration and sadness over something I so enjoyed and cannot do any longer. I was an excellent cook, and so is my dad, and we are sicilian, and food is just so tied to so much of my life and memories.

So, please, if you have any ideas or things that work for you, lemme know. I will try them. I am going to google the sea minerals, or whatever that is. Will try that. I am still using baby tooth paste and children's flouride ACT. I was afraid of flouride, but I am more afraid of losing the teeth I have left that they did not pull before my radiation. Even the baby products hurt, but I magic swizzle before to tolerate the dental care.

Even the doctors are frustrated over my lack of healing. I also have Fanconis Anemia. Which apparently is how I developed the Head and Neck Cancer. They are fond of blaming my slow healing and other issues on the Fanconis.

Oh, and what does NCP stand for? I feel so lame, I cannot figure it out. I don't think I ever said my diagnosis. Matastatic Squamous Cell Head and Neck Cancer with Unknown Primary. Stage IV.

pk said:

Hondo - tips for dry mouth
Hondo,
What is Sea Mineral Boost, and where do you buy the Stoppers stuff?
Also, have you found anything other that water that you can drink that tastes ok. Bob does drink a little coffee every morning, plenty of water, and also drinks milk (especially chocolate), but would love something with a bit of flavor, and diet soda is not working at all. Any tips would be appreciated.
Phyllis

flavors
I have been drinking a lot of Sobe vitamin water - especially the pear flavor - it is mild enough to go down easily, yet flavored enough to taste good - besides, it is loaded with vitamins. It is available at my local grocery store, quick marts and pharmacies. Dazey

Hondo said:

Hi pk
I am glad to see Bob is doing well, I get the biotene at Walgreens, the Stoppers 4 at http://www.drugstore.com

The Sea Mineral Boost my daughter gets for me, I will find out where, it helps the complete body. I wish I could find something other then water to tell you about, but you can try flavoring his water with cranberry juice or a tea, I like the tea myself. For some reason I can’t handle sodas they burn me to much.

I am hoping that a lot of others will start posting what they are doing, as we all learn from each other

Where are you going this year for vacation?

Take care

Good Morning, Hondo and All
Thanks for the tips. Will order some Stoppers and we are interested in learning more about The Sea Mineral Boost.
We leave for St. Simons Island, GA on the 26th and will stay until around April 17th. We are looking forward to the drive as well as the change of scene. No Drs. appts. either - the best!!!!!

Another question for you. Are you still practicing your vegetarian ways? Do you eat all organic? Bob, will NEVER become a veg., but we are trying to incorporate better nutrition into our meals - more vegies etc. He still hasn't found any fruit that tastes good enough to eat. Just gotta keep trying, I guess. Anyway, I commend you for your diligence to your lifestyle - I myself still enjoy my cocktails!!! Ha Ha!!

pk said:

Good Morning, Hondo and All
Thanks for the tips. Will order some Stoppers and we are interested in learning more about The Sea Mineral Boost.
We leave for St. Simons Island, GA on the 26th and will stay until around April 17th. We are looking forward to the drive as well as the change of scene. No Drs. appts. either - the best!!!!!

Another question for you. Are you still practicing your vegetarian ways? Do you eat all organic? Bob, will NEVER become a veg., but we are trying to incorporate better nutrition into our meals - more vegies etc. He still hasn't found any fruit that tastes good enough to eat. Just gotta keep trying, I guess. Anyway, I commend you for your diligence to your lifestyle - I myself still enjoy my cocktails!!! Ha Ha!!

So Jealous
St. Simon's Island? Went there years ago for Spring Break. LOVED it! Have a wonderful time

sweetblood22 said:

many thanks
Thank you so much for starting this thread. I do not want to sound like a whiney baby, but since you started this in regard to my saliva issue, i will go into a bit more info. One of my issues is that everything still burns my mouth. Water burns. I have tried some Biotene products but hurts my mouth to the point of making my eyes water and I end up with my nose running and eyes tearing up from the pain.

Even things that you would normally think would be soft and easy to eat are not. I keep trying things, but I am not finding much of anything that does not hurt. Even mashed potatoes feels like fine grit sandpaper. I am sure you are all well aware of what it's like. Sometimes people ask me what the pain is like. I sort of think it's like when you scaled your tongue on boiling coffee, or lava hot cheese, but waayyy worse.

This has been the hardest thing for me. It is hard to explain to people who have not been thru this. they just "don't get it." I am crying on a weekly basis about the frustration of missing food, and eating and sitting at the table eating with my family.

I had to have two dillitations to stretch my esophogus, I realize I am lucky to even be able to swallow some bites of some food now. I could not swallow food at all over Christmas. We had some relatives up that had not seen me in a while and wanted to know why I was not going to sit at the table for Christmas dinner. Their veiw was that I "should be polite" and at least sit there and catch up. I almost came unglued. I am glad that my dad handled it for me because I thought the top of my head was going to pop off. He had to explain to them again that I had not eaten ANY food since 4-20-09. There were times when I could smell my gram toasting a bagel, and I would just cry.

I am a little embarrassed to type this, but honestly, I have not really ever cried about my cancer or getting diagnosed. I am struggling more with this food thing. It is killing me that I cannnot eat normally. I am already on Lexapro, and I don't believe that I am experiencing depression. Just intense frustration and sadness over something I so enjoyed and cannot do any longer. I was an excellent cook, and so is my dad, and we are sicilian, and food is just so tied to so much of my life and memories.

So, please, if you have any ideas or things that work for you, lemme know. I will try them. I am going to google the sea minerals, or whatever that is. Will try that. I am still using baby tooth paste and children's flouride ACT. I was afraid of flouride, but I am more afraid of losing the teeth I have left that they did not pull before my radiation. Even the baby products hurt, but I magic swizzle before to tolerate the dental care.

Even the doctors are frustrated over my lack of healing. I also have Fanconis Anemia. Which apparently is how I developed the Head and Neck Cancer. They are fond of blaming my slow healing and other issues on the Fanconis.

Oh, and what does NCP stand for? I feel so lame, I cannot figure it out. I don't think I ever said my diagnosis. Matastatic Squamous Cell Head and Neck Cancer with Unknown Primary. Stage IV.

A Quick Question ?
Hi Sweetblood,

Sorry to hear that you are having so much trouble on the road to recovery. After reading your post, I was wondering if you might of had a Neck Disection ? Do you know how many RAD's you received in the Radiation Treatments ?

The reason I ask these questions is that the Neck Disection can cause a back up of the fluids in the Lymphnode system. The neck and face get puffy and swell, inside and outside. If this is part of your problem, this in turn will narrow your air passageway/ throat. Causing issues in your abilitiiy to swallow food. Radiation treatments also cause the sweeling of the troat. Is there scarring tissue in your throat ? Everybody does not receive the same amounts of RAD's. I noticed in one of Hondo's posts that he received a total of something like 144,000 Rad's over two different bouts with cancer. I received about 1/2 of that amount and my troat was narrow for some time.

I hear you about the water burning you, that happened to me also, I leaned on coffee that was a room temperature. It worked for me fo some reason, we all have to continue to experiment with different things until we find something that works.

I know that it burned me a little bit at times, but I used the Baking Soda and Salt solution in room temperature water ( 1 teaspoon of each in a quart of water ) to soothe my mouth and throat. I would do this as often as every 30 minutes if I felt I needed it. I didn't know about a Magic Mouthwash that many speak of here. But the solution that I mentioned did work for me.

I hope things get better for you soon

My Best to You and Everyone Here

MarineE5 said:

A Quick Question ?
Hi Sweetblood,

Sorry to hear that you are having so much trouble on the road to recovery. After reading your post, I was wondering if you might of had a Neck Disection ? Do you know how many RAD's you received in the Radiation Treatments ?

The reason I ask these questions is that the Neck Disection can cause a back up of the fluids in the Lymphnode system. The neck and face get puffy and swell, inside and outside. If this is part of your problem, this in turn will narrow your air passageway/ throat. Causing issues in your abilitiiy to swallow food. Radiation treatments also cause the sweeling of the troat. Is there scarring tissue in your throat ? Everybody does not receive the same amounts of RAD's. I noticed in one of Hondo's posts that he received a total of something like 144,000 Rad's over two different bouts with cancer. I received about 1/2 of that amount and my troat was narrow for some time.

I hear you about the water burning you, that happened to me also, I leaned on coffee that was a room temperature. It worked for me fo some reason, we all have to continue to experiment with different things until we find something that works.

I know that it burned me a little bit at times, but I used the Baking Soda and Salt solution in room temperature water ( 1 teaspoon of each in a quart of water ) to soothe my mouth and throat. I would do this as often as every 30 minutes if I felt I needed it. I didn't know about a Magic Mouthwash that many speak of here. But the solution that I mentioned did work for me.

I hope things get better for you soon

My Best to You and Everyone Here

saliva
Sweetblood, we can all understand your frustration. I do not know your age but it seems you are somewhat younger than most of us, hence all of the frustration. The body needs things to heal, one of the reasons you are having a tough time with eating is that you are not getting the nutrients that will allow you to start eating without the pain. Magic Mouthwash did nothing for me, I felt it was more harmful than helpful. You did not have a peg and therefore could not get the calories, proteins, vitamins and fluids necessary to help your taste buds to accept the nourishment without pain. I would put 2,500 calories a day through my peg. Try all of the products that the people here are using, try to drink as much water as you can, I use flavored water, non-carbonated from Wal-Mart. It is imperative that you get the nutrients one way or another. Are you losing weight or lost weight? denis

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?

wifeforlife
I feel like my mouth is funky most of the time, even this far out of treatment. Doesn't help that I cannot use minty products cause they burn. I brush and rinse throughout the day with kids dental products, and I still use the Paroxide rinse, and the baking soda rinse, lol. I had the same problems as your hubby. I know I would feel so bad for my step mom. She took me to radiation every day. We kept a bucket in the car with bags, and wipes, and air freshener, towards the end i would get sick and vomit on the way home after radiation.

I delt with that mucous for months after. At the high point, I would go thru over a pack of a hundred napkins a day, spitting out that crap. I can say I have been napkin free for two months. I just have some mucous in the morning when I wake up.

MarineE5 said:

A Quick Question ?
Hi Sweetblood,

Sorry to hear that you are having so much trouble on the road to recovery. After reading your post, I was wondering if you might of had a Neck Disection ? Do you know how many RAD's you received in the Radiation Treatments ?

The reason I ask these questions is that the Neck Disection can cause a back up of the fluids in the Lymphnode system. The neck and face get puffy and swell, inside and outside. If this is part of your problem, this in turn will narrow your air passageway/ throat. Causing issues in your abilitiiy to swallow food. Radiation treatments also cause the sweeling of the troat. Is there scarring tissue in your throat ? Everybody does not receive the same amounts of RAD's. I noticed in one of Hondo's posts that he received a total of something like 144,000 Rad's over two different bouts with cancer. I received about 1/2 of that amount and my troat was narrow for some time.

I hear you about the water burning you, that happened to me also, I leaned on coffee that was a room temperature. It worked for me fo some reason, we all have to continue to experiment with different things until we find something that works.

I know that it burned me a little bit at times, but I used the Baking Soda and Salt solution in room temperature water ( 1 teaspoon of each in a quart of water ) to soothe my mouth and throat. I would do this as often as every 30 minutes if I felt I needed it. I didn't know about a Magic Mouthwash that many speak of here. But the solution that I mentioned did work for me.

I hope things get better for you soon

My Best to You and Everyone Here

marineE5
Yes, I did have a neck dissection. It was January 09. I still have to sleep propped up a little or my face is puffy in the morning. You may have something there. They have done a couple of stretchings for me. The last one was just a month ago, and swallowing is better. I guess my throat or esophugus was don below 2mm. Swallowing iquids was getting hard. They said that it was from the radiation treatments. No one has ever said that i had any scar tissue in my throat.

I have no clue about the rads. I think the number 65 sticks in my head, but I cannot be sure. I only remember asking my RO if since I had Fanconis Anemia if they could give me less radiation than other people. I went for three opinions. Fanconis is very rare, and we are very touchy when it comes to medications, and treatments, etc. Anyway, the radiologist said no, and that I had to have as much as any other patient to make sure that they "got it all". They also never found my primary.

I will keep plugging away, and trying things daily, as I have been. I notice I feel a bit better even gaining 4lbs.

Thanks for everyones imput!

Oh, and last night I ordered some Boost Breeze. I got a sample from my Nutritionist, and it went down okay, so I ordered a pack. Thought it would be a change from all the 'milky' drinks I have been doing. I used to drink Vitamin Water all the time before radiation, it bothers me now. After radiation, I was able to drink flat Mug Root Beer. I lived on that as a drink for months. I am sick of it now. LOL