need suggestions

sbmantha

Hello all,

greetings

i am 32 year old who has been diagnosed with Squamous cell carcinoma of tongue and underwent surgery almost two months back and am recovering. i was asked to go for radiation for 27 sessions. all went well till 14 sessions and after that due to problems in swallowing i stopped taking food and was on liquid diet. now i have developed oral thrush and am under treatment. my main problem is over secretion of saliva. my therapist says that it will control once radiation is stopped. can anyone please suggest me some remedies or tips to control over secretion of saliva.

thanks and regards

SASH

Saliva
I found the best way of getting rid of the unwanted saliva was to keep a box of puffs tissue, unscented and no lotion with me at all times. When the urge presented itself, I would take one or two tissues and wipe the inside of my mount. Went through plenty of boxes of tissue but it made it manageable.

The funniest was one day when the wind caught the saliva and while still attached to my mouth, it must have been 8 to 10 feet long and flying in the air.

soccerfreaks

thrush
The conditions you describe are certainly not uncommon among those of us who have gone through the tongue cancer experience. Speaking to the thrush issue first, you must know that it is a yeast-based fungus. Consider the following:

"If oral thrush occurs it will be difficult to eat, due to the sores in the mouth. It is recommended to drink plenty of liquids, this will aid in any dehydration. It is also recommended to drink fluids such as enriched milk drinks which contain the vitamins, minerals and energy that is needed to help fight the fungus overgrowth. If eating is a problem try eating soft foods that are high in vitamins such as chicken soups and seafood soups.

Researchers have found that eating cultured milk products may help prevent bacterial overgrowth caused by antibiotic treatment. Yogurt is a good source, as a cultured milk product and it also contains zinc which helps the immune system retain vitamin C that helps fight infections."

While I am not amped up about the grammar in the above, I do advise yogurt, especially. During the time I was rehabilitating from my tongue/neck cancer, yogurt was a daily and repetitive part of my diet. Beyond thrush, it is good for digestion in general.

The rest, re the soft foods, goes without saying I think.

Regarding your saliva problem, I believe that this is ALSO an issue for most of us who have had surgery and/or radiation, in particular for head/neck cancer.

It is common knowledge that radiation can toast the salivary glands. For those of us fortunate enough to retain some use from them (I am one) it is also true that they get out of sorts, as you describe, and as SASH so eloquently illustrates .

In my personal experience, the problem does not simply go away when the radiation stops. Simply put, three years later, I am still dealing with the issue of a build up of mucous, which is what I think it is.

My solution, frankly, is to go to the bathroom or kitchen, gargle with a bit of water, and eject it. It seems reluctant to be swallowed, I have found, and also intereferes with both eating and speaking, given its way.

Carry a water bottle with you when you are away from home (at work, for example), so that you can gargle wherever you are, and find a polite place to get rid of it, whether the bathroom at work or out front of whatever building you are at. This does work and is not as gross or impolite as it seems.

In addition, as you already know, I am sure, it feels great to be rid of it!

It will not go away when radiation stops. Even your rad doc knows that the rads keep cooking AFTER the last radiation treatment. Beyond that, as you can figure out from above, for some of us it seems to hang around for quite some time afterward. I am now three years out of treatment and still have to deal with it on occasion, although it does abate to some degree.

Best wishes in resolving this problem, a minor one really, in the grand scheme of things and considering what you have been through.

Take care,

Joe

sbmantha

Thank you
Thank you very much Sash and soccerfreaks for your replies... i wish i could rid of this problem very soon

Fireman

sbmantha said:

Thank you
Thank you very much Sash and soccerfreaks for your replies... i wish i could rid of this problem very soon

Oral problems
Hi
This is another one of those experiences that vary among people. I had Thrush and not so much saliva as I did phlegm. After 4 weeks of radiation, my throat burned just from drinking water and no matter what I put in my mouth, it burned. I took medication for the thrush, but also got an infection in my throat for which I took liquid penicillin. At that point I began to loose so much weight and became so dehydrated from not being able to take anything by mouth without pain or gagging, I finally broke down and was hospitalized to have a PEG tube put in and to get rehydrated. So much for being a tough guy. The phlegm and spitting situation has improved but I still have the need to do so on occassion 7 months post radiation. I cleaned out and carried around my Ensure bottles to spit in then tossed them. Now that I'm eating and drinking normally, spitting is mostly at night. I don't create as much saliva since radiation but as the throat heals, it creates mucus which is thick and interferes with swallowing in the narrow passage created by swelling from radiation. It's a weird combination at times, dry mouth and mucusy throat. The good news is I feel it changing and it's becoming less and less mucusy while saliva appears to be re-emerging. Chewing gum helps me with saliva though I have to get fresh gum often because it turns to power in a short time. All mucositis, Thrush, and throat infections have resolved and I'm eating just about anything once again. My taste for sweets is different now. Soft drinks no longer have an appeal to me. Now water is just fine and I couldn't stand it before. It took me 4 months to begin eating after radiation. I still have my PEG tube but haven't used it since Thanksgiving. I will have it removed next month after my PET scan. It does get better so hang in there and keep seeking advise and encouragement. As you can see, everyone has a slightly different experience so hopefully you will be able to help someone else as you manage your way through.

Take care

Kevin

sbmantha

Fireman said:

Oral problems
Hi
This is another one of those experiences that vary among people. I had Thrush and not so much saliva as I did phlegm. After 4 weeks of radiation, my throat burned just from drinking water and no matter what I put in my mouth, it burned. I took medication for the thrush, but also got an infection in my throat for which I took liquid penicillin. At that point I began to loose so much weight and became so dehydrated from not being able to take anything by mouth without pain or gagging, I finally broke down and was hospitalized to have a PEG tube put in and to get rehydrated. So much for being a tough guy. The phlegm and spitting situation has improved but I still have the need to do so on occassion 7 months post radiation. I cleaned out and carried around my Ensure bottles to spit in then tossed them. Now that I'm eating and drinking normally, spitting is mostly at night. I don't create as much saliva since radiation but as the throat heals, it creates mucus which is thick and interferes with swallowing in the narrow passage created by swelling from radiation. It's a weird combination at times, dry mouth and mucusy throat. The good news is I feel it changing and it's becoming less and less mucusy while saliva appears to be re-emerging. Chewing gum helps me with saliva though I have to get fresh gum often because it turns to power in a short time. All mucositis, Thrush, and throat infections have resolved and I'm eating just about anything once again. My taste for sweets is different now. Soft drinks no longer have an appeal to me. Now water is just fine and I couldn't stand it before. It took me 4 months to begin eating after radiation. I still have my PEG tube but haven't used it since Thanksgiving. I will have it removed next month after my PET scan. It does get better so hang in there and keep seeking advise and encouragement. As you can see, everyone has a slightly different experience so hopefully you will be able to help someone else as you manage your way through.

Take care

Kevin

Thanks
Thanks Kevin..

joolivermesplay

soccerfreaks said:

thrush
The conditions you describe are certainly not uncommon among those of us who have gone through the tongue cancer experience. Speaking to the thrush issue first, you must know that it is a yeast-based fungus. Consider the following:

"If oral thrush occurs it will be difficult to eat, due to the sores in the mouth. It is recommended to drink plenty of liquids, this will aid in any dehydration. It is also recommended to drink fluids such as enriched milk drinks which contain the vitamins, minerals and energy that is needed to help fight the fungus overgrowth. If eating is a problem try eating soft foods that are high in vitamins such as chicken soups and seafood soups.

Researchers have found that eating cultured milk products may help prevent bacterial overgrowth caused by antibiotic treatment. Yogurt is a good source, as a cultured milk product and it also contains zinc which helps the immune system retain vitamin C that helps fight infections."

While I am not amped up about the grammar in the above, I do advise yogurt, especially. During the time I was rehabilitating from my tongue/neck cancer, yogurt was a daily and repetitive part of my diet. Beyond thrush, it is good for digestion in general.

The rest, re the soft foods, goes without saying I think.

Regarding your saliva problem, I believe that this is ALSO an issue for most of us who have had surgery and/or radiation, in particular for head/neck cancer.

It is common knowledge that radiation can toast the salivary glands. For those of us fortunate enough to retain some use from them (I am one) it is also true that they get out of sorts, as you describe, and as SASH so eloquently illustrates .

In my personal experience, the problem does not simply go away when the radiation stops. Simply put, three years later, I am still dealing with the issue of a build up of mucous, which is what I think it is.

My solution, frankly, is to go to the bathroom or kitchen, gargle with a bit of water, and eject it. It seems reluctant to be swallowed, I have found, and also intereferes with both eating and speaking, given its way.

Carry a water bottle with you when you are away from home (at work, for example), so that you can gargle wherever you are, and find a polite place to get rid of it, whether the bathroom at work or out front of whatever building you are at. This does work and is not as gross or impolite as it seems.

In addition, as you already know, I am sure, it feels great to be rid of it!

It will not go away when radiation stops. Even your rad doc knows that the rads keep cooking AFTER the last radiation treatment. Beyond that, as you can figure out from above, for some of us it seems to hang around for quite some time afterward. I am now three years out of treatment and still have to deal with it on occasion, although it does abate to some degree.

Best wishes in resolving this problem, a minor one really, in the grand scheme of things and considering what you have been through.

Take care,

Joe

Hi Joe
This is jo also , if you remember I wrote about my hub having surgery and removal of his tongue , he has now been told that he will not be able to swallow even if he has another surgery , so he has accepted that .
Did you have the muscle flap , he ended up having to have muscle flaps took from both sides because of infection that destroyed the first , can you tell me if your neck is stiff and rigid from the flaps , he cannot turn his head, or move it up and down or back , also he is now saying that when he bends over something blocks his airway , I just now laid down on the floor and he bent over and it looks like the small piece of flap almost completely closed his throat opening , I told him i would call or make an appt , he wrote me a note that said I DON'T WANT ANYMORE SURGERY , he said he would stoop instead of bending ...lol..so be it ,,,Now the saliva , when he bent over for me to look in his mouth , he suctioned before and said you will have to hurry , I said well i have been spit on before , he just laughed and patted me on the head ..his solution to the saliva is suction it out in the home or car and carry tissues when he goes anywhere ...after the first round with this he did not have any saliva , so he used EVOXAC , that worked for him , , have a great day , JO

joolivermesplay

Fireman said:

Oral problems
Hi
This is another one of those experiences that vary among people. I had Thrush and not so much saliva as I did phlegm. After 4 weeks of radiation, my throat burned just from drinking water and no matter what I put in my mouth, it burned. I took medication for the thrush, but also got an infection in my throat for which I took liquid penicillin. At that point I began to loose so much weight and became so dehydrated from not being able to take anything by mouth without pain or gagging, I finally broke down and was hospitalized to have a PEG tube put in and to get rehydrated. So much for being a tough guy. The phlegm and spitting situation has improved but I still have the need to do so on occassion 7 months post radiation. I cleaned out and carried around my Ensure bottles to spit in then tossed them. Now that I'm eating and drinking normally, spitting is mostly at night. I don't create as much saliva since radiation but as the throat heals, it creates mucus which is thick and interferes with swallowing in the narrow passage created by swelling from radiation. It's a weird combination at times, dry mouth and mucusy throat. The good news is I feel it changing and it's becoming less and less mucusy while saliva appears to be re-emerging. Chewing gum helps me with saliva though I have to get fresh gum often because it turns to power in a short time. All mucositis, Thrush, and throat infections have resolved and I'm eating just about anything once again. My taste for sweets is different now. Soft drinks no longer have an appeal to me. Now water is just fine and I couldn't stand it before. It took me 4 months to begin eating after radiation. I still have my PEG tube but haven't used it since Thanksgiving. I will have it removed next month after my PET scan. It does get better so hang in there and keep seeking advise and encouragement. As you can see, everyone has a slightly different experience so hopefully you will be able to help someone else as you manage your way through.

Take care

Kevin

hi Kevin
sounds like you have been thru what my hub did , you keep on keeping on , and my husband drank about a gallong of low fat milk daily because he did not produce saliva , he also took Evoxac that helped him a lot.He had that mucositis also , it was horrible for both of us , I know this is not about me , but i learned to eat and live thru anything and still support him ,this ca is awful , and if it is caused by smoking everyone sure needs to quit before they get it , my hub had been quit for 23 years and they still blamed smoking ,,,do they know.????..God Bless..Jo

soccerfreaks

joolivermesplay said:

Hi Joe
This is jo also , if you remember I wrote about my hub having surgery and removal of his tongue , he has now been told that he will not be able to swallow even if he has another surgery , so he has accepted that .
Did you have the muscle flap , he ended up having to have muscle flaps took from both sides because of infection that destroyed the first , can you tell me if your neck is stiff and rigid from the flaps , he cannot turn his head, or move it up and down or back , also he is now saying that when he bends over something blocks his airway , I just now laid down on the floor and he bent over and it looks like the small piece of flap almost completely closed his throat opening , I told him i would call or make an appt , he wrote me a note that said I DON'T WANT ANYMORE SURGERY , he said he would stoop instead of bending ...lol..so be it ,,,Now the saliva , when he bent over for me to look in his mouth , he suctioned before and said you will have to hurry , I said well i have been spit on before , he just laughed and patted me on the head ..his solution to the saliva is suction it out in the home or car and carry tissues when he goes anywhere ...after the first round with this he did not have any saliva , so he used EVOXAC , that worked for him , , have a great day , JO

Laughing
Jo,

Here is the most important thing about your post, in my opinion: you both have a great sense of humor! I laughed reading bits of it, and that is good for all of us. As it turns out, just the other night I bent over to kiss my wife, and afterward told her she didn't know how close she came to being drooled on (rather than over, mind you ).

To answer your questions, I hope, I had a tongue resection: they replaced half of my tongue with pieces of stuff, including nerves even (!) from my left arm. So I can swallow, and I can talk.

My problems, as it turns out, revolve around the surgery (which did include a radical neck dissection) and, perhaps more importantly, the radiation. It seems that the radiation caused some permanent swelling that affects the ability to swallow. No more steak for me, at least for now.

The person on here (the board) that I know that really might be able to help is a guy named SASH. I think his experience might be a bit closer to your hub's than mine. And he DOES eat.

Hope and humor, my friend!

Take care,

Joe

soccerfreaks

joolivermesplay said:

hi Kevin
sounds like you have been thru what my hub did , you keep on keeping on , and my husband drank about a gallong of low fat milk daily because he did not produce saliva , he also took Evoxac that helped him a lot.He had that mucositis also , it was horrible for both of us , I know this is not about me , but i learned to eat and live thru anything and still support him ,this ca is awful , and if it is caused by smoking everyone sure needs to quit before they get it , my hub had been quit for 23 years and they still blamed smoking ,,,do they know.????..God Bless..Jo

5 percenter
Jo, they say that 95% of those afflicted with this particular brand of cancer are smokers OR smokes/drinkers. That still leaves 5% that they cannot explain.

Once you have it, though, I would think there is no longer a need to even worry about where it came from: imagine Ed McMahon bellowing, Heeeeere's Cancer!

I concur with you re the smoking, though. I will admit that I smoked my last couple of cigarettes on the way to the hospital for the surgery, but there is nothing like some good old-fashioned tongue and neck cutting to get you in the mood to quit.

I swore, even so, that I would not become a preacher to those who still smoke. To myself, I lied . When I see kids smoking in the street in front of my house or, heck, even at the convenience store, I will sometimes make a point to lift my shirt and show them the feed tube (this is the greatest visual effect ever invented ).

Take care, my friend,

Joe

Unknown

This comment has been removed by the Moderator