Saliva Glands

Hondo

Skiffin16 said:

Amifostine Also
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.

John

John
I was very dry in the mouth for almost 2 years and then all of a sudden my saliva glands started working about ½ of there capacity, now it is up almost to 60% working. Not enough to eat with but I can go with out the water bottle tied to my belt for quite a spell. I am not sure if this was due to the amifostine shots or not, but I am not complaining about taking the stuff.

I was trying to get a little trip to Tampa this week with my Son, but as you would know there was no room for the old man. Darn the bad luck….

Kent Cass

Skiffin16 said:

Amifostine Also
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.

John

the shots
Treated with full head and neck from Feb-April of 09, I got nothing before the rads. As for my 15+-month salivary condition: maybe I should've gotten. Thing is, the body deals with it all as it does- survival mode being what the body knows. My spit is, as I've noted many times, like a thick white foam. Carrying water, for hydration to assist, is important.

John- you have a PM from me.

kcass

Skiffin16

Hondo said:

John
I was very dry in the mouth for almost 2 years and then all of a sudden my saliva glands started working about ½ of there capacity, now it is up almost to 60% working. Not enough to eat with but I can go with out the water bottle tied to my belt for quite a spell. I am not sure if this was due to the amifostine shots or not, but I am not complaining about taking the stuff.

I was trying to get a little trip to Tampa this week with my Son, but as you would know there was no room for the old man. Darn the bad luck….

Hondo
Good Morning Hondo,

Sorry that it didn't work out this time around. It'll be great to see you again, hopefully in the near future. Is your son locating here now?

God Bless,
John

Skiffin16

Kent Cass said:

the shots
Treated with full head and neck from Feb-April of 09, I got nothing before the rads. As for my 15+-month salivary condition: maybe I should've gotten. Thing is, the body deals with it all as it does- survival mode being what the body knows. My spit is, as I've noted many times, like a thick white foam. Carrying water, for hydration to assist, is important.

John- you have a PM from me.

kcass

Foam Spit
Sorry Double Posted

Skiffin16

Kent Cass said:

the shots
Treated with full head and neck from Feb-April of 09, I got nothing before the rads. As for my 15+-month salivary condition: maybe I should've gotten. Thing is, the body deals with it all as it does- survival mode being what the body knows. My spit is, as I've noted many times, like a thick white foam. Carrying water, for hydration to assist, is important.

John- you have a PM from me.

kcass

Foam Spit
LOL, good discription Kent. I also have that, less now than at first and not as thick. I do actually have clear liquid spit as of recent, but it kind of comes and goes. With the cooler weather and indoor heating I'm kind of in a very dry mouth state for now. But like I said it tends to come and go depending on my environment.

I have noticed that I don't need as much water to wash food down these last few weeks, which is a blessing.

Hopefully yours will improve also. I've read several people that have had improvements as Hondo out a few years post.

Good Luck, God Bless,
John

Skiffin16

Hondo said:

John
I was very dry in the mouth for almost 2 years and then all of a sudden my saliva glands started working about ½ of there capacity, now it is up almost to 60% working. Not enough to eat with but I can go with out the water bottle tied to my belt for quite a spell. I am not sure if this was due to the amifostine shots or not, but I am not complaining about taking the stuff.

I was trying to get a little trip to Tampa this week with my Son, but as you would know there was no room for the old man. Darn the bad luck….

Fever
It was mentioned to me and I'm not completely sure why about the seriousness of posting that I had a fever of 103. I stand corrected I actually had a fever of 102.7, three nights running.

I guess that I am felt obligated to explain the seriousness of having such a high fever.

My doctors all discussed with me prior to treatment that any time I have a fever reaching 101.5 that I need to call in. To call in day or night and not to wait. They stated to me in these words, "some people wake with a fever at above 101.5 in the middle of the night and feel they'll call in first thing in the morning". They told me never do that as it could have very serious consequences.

When my fever spiked to 102.7, I called in, actually my wife was on the phone as we were getting ready to go into the emergency room. When we got hold of my doctors that night, they told me to take Tylnol and check back with them in an hour if it didn't go down.

The fever did go back down, but that same scenario repeated for the next two nights after having the Amifostine and Radiation. The final night my temperature dropped to 96.7 giving me sever chills (blankets and heating pads) the rising to 102.7 again.

Each night we called in and was told the same thing. I was fianlly fed up with that, the chills scared us both. It was to the point that my chest was hurting. None of the radiology staff had an explanation and as stated above, I was angry and scared.

They had stressed never to let a temperature of 101.5 go un-reported and now it seemed nobody was concered of a temperature of 102.7. I stopped my treatment for a few days until we could find out what was happening.

Two of those high fever nights were Thursday and Friday. That week-end I had no reaction, no fever. Monday night was the worse with the chills then the fever again.

That Wednesday we started the radiation again minus the Amifostine. I never had any other bouts with extreme fevers.

I hope I have explained this to satisfaction.

John

Kent Cass

Skiffin16 said:

Fever
It was mentioned to me and I'm not completely sure why about the seriousness of posting that I had a fever of 103. I stand corrected I actually had a fever of 102.7, three nights running.

I guess that I am felt obligated to explain the seriousness of having such a high fever.

My doctors all discussed with me prior to treatment that any time I have a fever reaching 101.5 that I need to call in. To call in day or night and not to wait. They stated to me in these words, "some people wake with a fever at above 101.5 in the middle of the night and feel they'll call in first thing in the morning". They told me never do that as it could have very serious consequences.

When my fever spiked to 102.7, I called in, actually my wife was on the phone as we were getting ready to go into the emergency room. When we got hold of my doctors that night, they told me to take Tylnol and check back with them in an hour if it didn't go down.

The fever did go back down, but that same scenario repeated for the next two nights after having the Amifostine and Radiation. The final night my temperature dropped to 96.7 giving me sever chills (blankets and heating pads) the rising to 102.7 again.

Each night we called in and was told the same thing. I was fianlly fed up with that, the chills scared us both. It was to the point that my chest was hurting. None of the radiology staff had an explanation and as stated above, I was angry and scared.

They had stressed never to let a temperature of 101.5 go un-reported and now it seemed nobody was concered of a temperature of 102.7. I stopped my treatment for a few days until we could find out what was happening.

Two of those high fever nights were Thursday and Friday. That week-end I had no reaction, no fever. Monday night was the worse with the chills then the fever again.

That Wednesday we started the radiation again minus the Amifostine. I never had any other bouts with extreme fevers.

I hope I have explained this to satisfaction.

John

Thank you
Must've been very frustrating for you. 101 is the break point I was told for Onco notification. I think what you posted is exceptional knowledge for all in, or about to go thru, treatment. Very serious business, because it basically can be when, as I was told by the ER Dr., a person can have no hope of winning a fight without hospitalization, and antibiotics fed into an IV and Port. Suppose it depends on where one is in treatment, and the specifics of said treatment, but your fever getting up to 102.7- I think every one of us can appreciate how "angry" you must have been with the response you got from your med team.

Thank you, John. You got a PM.

kcass

Skiffin16

Kent Cass said:

Thank you
Must've been very frustrating for you. 101 is the break point I was told for Onco notification. I think what you posted is exceptional knowledge for all in, or about to go thru, treatment. Very serious business, because it basically can be when, as I was told by the ER Dr., a person can have no hope of winning a fight without hospitalization, and antibiotics fed into an IV and Port. Suppose it depends on where one is in treatment, and the specifics of said treatment, but your fever getting up to 102.7- I think every one of us can appreciate how "angry" you must have been with the response you got from your med team.

Thank you, John. You got a PM.

kcass

Serious Business Indeed
I mentioned above the medical staff advising me during the initial cancer treatment session the importance of monitoring your temperature during treatment. They actually told me that some people have woke in the middle of the night with a fever exceeding the 101.5. These people decided to go in first thing in the morning instead of calling that night and there was a possibility that they wouldn't make it to the morning.

Not to make light of the situation, and please forgive me for my sense of humor. But they had me to the point of being so concerned that I actually told my wife and the nurses that I was going to stick an electronic meat thermometer in my butt set to alarm at 100.

As I mentioned to Kent, my original posting was merely meant to share with others that are having similar treatment and conditions with Radiation and Amifostine that I had the fever reaction. That if someone else has a similar reaction it could also be related....

John

santa6

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.

Painful Mouth
I too had SCC Head & Neck with unknown primary. I was an early stage III. I am now 4 months out of treatment. I had simultaneous chemo and 35 radiation shots using IMRT(Intensity modulated) which is not common radiation application with unknown primary. I suffered for 3 months with the mouth pain, especially the tongue. It turned out to be extremely stubborn thrush. After being off it for a month, my doctors put me back on fluconozole(sp?) and after about six weeks it went away completely(this was about 4 weeks ago). This improved my taste(I'm at about 85% now)and eliminated my pain and reduced the funky mouth thing. I only have at best about 20% of my saliva and I suspect that is the primary cause for the funky mouth. I have a friend that had simialar diagnosis and treatment who is 9 months ahead of me and his saliva just returned to full normal about a month ago. Hope for the best.

santa6

dennis318 said:

Phlem
Can anyone help me with the Phlem problem, I was told this would eventually stop, but when? This was part of the radiation to my throat, and was told this is a natural aid to heal my throat form being cooked, my outside of my throat has healed, but the doctor said the inside is 3 times worst and would take longer...I find this embarassing, having to take a cup, tissues and hoping one day it will stop, drinking water seems to egg it on, and produce more, but I can't stop drinking, epsecially in the morning when my throat is so sore, any positve or up lifting encouragement you could share..please do. Thanks Dennis, Made it Threw my Chemo and radiation, 4th week into recovery!!!

Phlem
Dennis, I struggled mightily with the phlem thing for five weeks after treatment. I really thought it would never go away and much like is mentioned elsewhere in this thread, I was beginning to wonder why I did the treatment if this was going to be my quality of life.

IT GOES AWAY!!! It takes longer for some than for others, but it will go away.

In the interim, I used club soda with a dash of cranberry juice. The club soda cuts through that stuff like magic.

Kent Cass

Skiffin16 said:

Hondo
Good Morning Hondo,

Sorry that it didn't work out this time around. It'll be great to see you again, hopefully in the near future. Is your son locating here now?

God Bless,
John

Saliva
John- thank you. Yes, I have noticed the saliva thing getting a little better, when eating my salads. Have noticed that it seems stress spikes the dry mouth/saliva problem.

kcass

Skiffin16

Kent Cass said:

Saliva
John- thank you. Yes, I have noticed the saliva thing getting a little better, when eating my salads. Have noticed that it seems stress spikes the dry mouth/saliva problem.

kcass

Saliva Producer
I have started chewing some of the sugarless gum, like Hondo suggested. The mints or winter mints seem to produce a lot of nice wet saliva....not sure if you've tried it or not.

sportsman

fsdman said:

sweetblood,
google the
sweetblood,
google the term"acupunture for xerostomia". I did 13 weeks and after 3 weeks things started to get better inregards to saliva but also taste and the burning of my tongue.I am also Sicilian and I miss my foods. I will eat good again.It is much better now but I remember thinking it never would.The changes are gradual.Good luck

Saliva Glands
Where can you find someone to do the acupuncture that can follow the protocol from the study. I live in a small town in North Carolina and do not even know of anyone that does acupuncture. Is this a expensive procedure?

AntMan

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.

Hi Sweet
Just wondering how things are with your eating. What foods are working for you?

~Anthony

Clearblue

AntMan said:

Hi Sweet
Just wondering how things are with your eating. What foods are working for you?

~Anthony

Giant Land
Today , (after asking her why she doesnt try yet another suggested remedy )my wife told me that no-one (including me), but no-one understands what shes going through and that the best advice she could give me was: just stop telling her what to do!

and then this post pops up!

This together with Hondos "list out of hell", is the tsunami of H&N Rads. No offense intended at all, but there is something very enveloping about this post for me now.

She is somehow managing to force down white(empty calories) bread and a little cheese.
She's on feeding pump; 2 cans at night and 2 cans during the day.
Her mouth sores are so bad that the Onco stopped erbitux this week.

SB, Ive told you before, youre a GIANT. (ACTUALLY YOU ALL ARE)

Clear

sweetblood22

AntMan said:

Hi Sweet
Just wondering how things are with your eating. What foods are working for you?

~Anthony

Anthony
Wow. Reading this thread from a whole year ago was just blowing my mind. I have thankfully come such a long way over this last year. It has been a long two years.

Anthony, I am very happy to say that I am eating pretty well these days. Totally different than the past, but at least it's food! I have figured out how to prepare foods so that I can swallow them. I have invested in three products that have been invaluable to me. A mini food processor, a juicer, and an emulsifier. I am able to get in enough nutrition and my diet is full of fruits, veggies and whole grains. The glutamine really works, I think. I prepare my fruit smoothies or my juice every day. I probably drink over 50% of my calories every day, but I have managed to from 87.5 pounds to 110.7 lbs.

My typical smoothies are pear/banana/almond milk, apple/orange/Chobani yogurt, peach/apricot/Chobani, cantaloup/peach/almond milk... Things like that. I usually do three servings of fruit and a bit of liquid or yogurt. Pear/chocolate almond milk ones are good too. For the juicer, I do more with fruit and veg combos. Carrot/apple/orange, apple/carrot/cantaloup, tomato/beet/apple, green apple/celery/cucumber/parsley/spinach/pear...

I make a three grain pilaf I use a lot as a staple. Add it to soup, stir fry it, or even mix the left over with salad dressing, chopped dried fruits, and make a grain salad with it. It's rice, bulgar wheat, and barley.

Lots of cooked veggies all kinds. Lots of sweet potatoes, mushrooms (can't swallow meat, so mushrooms are sort of my meat), barley, peanut butter and almond butter, oat meal, skim milk, lentils, beans, eggs, spinach, some fish, scallops, EVOO, avocados, edamame, pumpkin, squash, broccoli, fresh herbs, garlic....

So I am doing pretty well. I have learned to adapt some of the things I used to eat and prepare them in a way I can manage to eat them now. I even managed to eat a little bit of food at the Olive Garden Restaurant today. That's pretty amazing for someone that wasn't able to eat at all fir nine months! I even like and eat some foods I never did before. Of course there are things I miss, but I can hardly complain because I've come so far. I had a pretty good turning point at about 15 months or so out.

Always willing to share recipes and food ideas with anyone who is interested. I have always been a foodie and loved to cook.