Bad breath & Peg Tube

Mary53

I had a cancer tumor at the base of tongue and was treated with radiation and cisplatin chemo.I an now 8 months cancer free but still have issues.I have terrible bad breath and nothing I use helps much at all.Any ideas?I also am Peg fed as I still can't swallow much just little bits of water or pudding.I still have a lot of swelling and mucus around the base of tongue, Dr says are post radiation issues. Any idea how long these issues last before they go away?

soccerfreaks

You know, I was somewhat surprised that oral hygiene would be such a factor after surgery, rads and chemo, considering that I was taking in most of my nutrition via the peg tube, as it sounds like you are. But as you also point out with your reference to mucus, the mouth remains busy, even when we think we aren't using it.

You will find that you will want to maintain a good oral hygiene program, maybe even better than what you did before all of this occurred.

If you aren't already using something like Biatene toothpaste and mouthwash three times a day (or the Oasis product, or one of a few others) then I would recommend it highly.

I also use tic-tacs for moisture purposes AND for good breath, although others here rightly point out that it is not sugar-free and so offer alternatives that I can't remember at the moment. All I know is that the tic-tacs are doable even if you can't yet chew gum, and they are not acidic like the lemon drops that doctors recommend for some odd reason . They DO tend to OVER-moisturize, but that, to me, beats the alternative.

As for the mucus, that seems to be something you have to live with for at least the near future. I had my surgery in October of '05, followed by rads and chemo into early '06, and even now, I have to expel mucus on occasion, sometimes in the middle of the night, although IT DOES GET BETTER and DOES GET MANAGEABLE. At first I considered that maybe I would drown in it as my ultimate cause of death, but it does wane, and it does become something you can handle.

Re the peg tube and water and pudding, I would strongly advise that you stick with your program! One thing you do not want to do is to quit working your chewing muscles and end up closing your mouth, making your muscles in there weak and unusable! If you can drink sips of water, if you can take in spoonfuls of pudding, you are on the right track! Most of us in here, as Bughunter likes to remind people, and rightly so, went through that period where we thought maybe it would never get better. But it does. I advise being as aggressive as you possibly can be. If you can sip water, try sipping broths, try tomato soup. If you can handle pudding, try yogurts and definitely ice cream, both popsicles and the other kind.

Frankly, I think there are two big reasons why we don't try other things to begin with, the first being that it takes SOOO long to chew and swallow some things; the second being that we DO have to immediately head for the bathroom to brush and wash afterwards, because we aren't as efficient as we used to be in getting it all down the pipe, so to speak. Oh, and a third one for some of us: we don't want to waste things, so we refuse to eat something knowing we will only be able to take a bite or two at this point in time...Don't let that stop you! There are plenty more yogurts where that one came from! Consider it part of your physical therapy program.

In any event: stick with it! Congratulations on your survivorship, and best wishes as you go forward with your new challenges!

Take care,

Joe

wboaz

soccerfreaks said:

You know, I was somewhat surprised that oral hygiene would be such a factor after surgery, rads and chemo, considering that I was taking in most of my nutrition via the peg tube, as it sounds like you are. But as you also point out with your reference to mucus, the mouth remains busy, even when we think we aren't using it.

You will find that you will want to maintain a good oral hygiene program, maybe even better than what you did before all of this occurred.

If you aren't already using something like Biatene toothpaste and mouthwash three times a day (or the Oasis product, or one of a few others) then I would recommend it highly.

I also use tic-tacs for moisture purposes AND for good breath, although others here rightly point out that it is not sugar-free and so offer alternatives that I can't remember at the moment. All I know is that the tic-tacs are doable even if you can't yet chew gum, and they are not acidic like the lemon drops that doctors recommend for some odd reason . They DO tend to OVER-moisturize, but that, to me, beats the alternative.

As for the mucus, that seems to be something you have to live with for at least the near future. I had my surgery in October of '05, followed by rads and chemo into early '06, and even now, I have to expel mucus on occasion, sometimes in the middle of the night, although IT DOES GET BETTER and DOES GET MANAGEABLE. At first I considered that maybe I would drown in it as my ultimate cause of death, but it does wane, and it does become something you can handle.

Re the peg tube and water and pudding, I would strongly advise that you stick with your program! One thing you do not want to do is to quit working your chewing muscles and end up closing your mouth, making your muscles in there weak and unusable! If you can drink sips of water, if you can take in spoonfuls of pudding, you are on the right track! Most of us in here, as Bughunter likes to remind people, and rightly so, went through that period where we thought maybe it would never get better. But it does. I advise being as aggressive as you possibly can be. If you can sip water, try sipping broths, try tomato soup. If you can handle pudding, try yogurts and definitely ice cream, both popsicles and the other kind.

Frankly, I think there are two big reasons why we don't try other things to begin with, the first being that it takes SOOO long to chew and swallow some things; the second being that we DO have to immediately head for the bathroom to brush and wash afterwards, because we aren't as efficient as we used to be in getting it all down the pipe, so to speak. Oh, and a third one for some of us: we don't want to waste things, so we refuse to eat something knowing we will only be able to take a bite or two at this point in time...Don't let that stop you! There are plenty more yogurts where that one came from! Consider it part of your physical therapy program.

In any event: stick with it! Congratulations on your survivorship, and best wishes as you go forward with your new challenges!

Take care,

Joe

What Joe said. Also, the Biotene mouthwash really helps.

I had to go back to work and they wouldn't take out the tube until I could eat 3 meals a day for a week. I really had to force myself and it would take an hour to eat a meal but I did it. I started with grilled cheese sandwiches and tomato soup. I couldn't eat the crusts. Mashed potatoes and gravy, jello, Ensure, McDonalds cheeseburgers (took a while and the meat will seem very dry) and yogurts were my starting foods. Take very small bites, eat slowly and swallow carefully so that you don't choke. I also bit my lips and tongue many times as the nerve damage and coordination take a while to heal. Force yourself to eat and swallow or you will lose the ability.

soccerfreaks

wboaz said:

What Joe said. Also, the Biotene mouthwash really helps.

I had to go back to work and they wouldn't take out the tube until I could eat 3 meals a day for a week. I really had to force myself and it would take an hour to eat a meal but I did it. I started with grilled cheese sandwiches and tomato soup. I couldn't eat the crusts. Mashed potatoes and gravy, jello, Ensure, McDonalds cheeseburgers (took a while and the meat will seem very dry) and yogurts were my starting foods. Take very small bites, eat slowly and swallow carefully so that you don't choke. I also bit my lips and tongue many times as the nerve damage and coordination take a while to heal. Force yourself to eat and swallow or you will lose the ability.

Interesting thing about the fastfood burgers...it seems (in my experience) that processed foods, particularly in the meat line, are easier to work with than home-cooked stuff. I too could eat a mickeyD cheeseburger early on (without the bun, though) while i simply could not eat the ever-more delightful home-cooked, juicy, greasy...oh god, i'm having a...um, anyway, I had the same experience, and attribute it to the processed aspect. As for grilled cheese and tomato soup, I have recently found that to be a successful combo as well, even though both cheese and breads are usually a problem for me.

It's a strange place, and experimenting may seem like a bummer, but it can be fun, too. For example, I mentioned ice cream: I have been fooling with various toppings to see what I can get down, and find that the syrups are no problem (woohoo), nor are frozen strawberries, which i can bite down to small sizes, while cherries are too stringy at this point.

Have fun!

Take care,

Joe

Mary53

wboaz said:

What Joe said. Also, the Biotene mouthwash really helps.

I had to go back to work and they wouldn't take out the tube until I could eat 3 meals a day for a week. I really had to force myself and it would take an hour to eat a meal but I did it. I started with grilled cheese sandwiches and tomato soup. I couldn't eat the crusts. Mashed potatoes and gravy, jello, Ensure, McDonalds cheeseburgers (took a while and the meat will seem very dry) and yogurts were my starting foods. Take very small bites, eat slowly and swallow carefully so that you don't choke. I also bit my lips and tongue many times as the nerve damage and coordination take a while to heal. Force yourself to eat and swallow or you will lose the ability.

I have had the tube for 8 months now and as for food and water can only get little sips of water in, same with pudding and yogurt.Suck on little pieces of chocolate also. Still can't get enough in to take the swallowing test....but not giving up! Speech therapist thinks where I still have alot of post radiation swelling and mucus is hindering my swallowing abilities.

soccerfreaks

Mary53 said:

I have had the tube for 8 months now and as for food and water can only get little sips of water in, same with pudding and yogurt.Suck on little pieces of chocolate also. Still can't get enough in to take the swallowing test....but not giving up! Speech therapist thinks where I still have alot of post radiation swelling and mucus is hindering my swallowing abilities.

Mary, I too had a speech therapist, but did not find her so very useful in some of the areas I needed work with. Unfortunately, as I was learn when I DID find a viable physical therapist, there are not so many PTs around who are skilled in working with patients such as you and me. But I DID find one, a bright lady who was willing to learn on the job, so to speak, with me and one or two others, and she helped me enormously with respect to eating. We did a lot of mouth/jaw movement types of exercises, and there were massages and plenty of heat. She KNEW where the swelling was and where the muscles needed to work and where they needed to be, and, again, she helped more than the speech therapist by far in this regard.

You may want to consider asking your doctors give you referral to a PT, as an additional source of progress, if you have not yet done so.

Good luck, my friend!

Joe

stevelfun

I chew gum....
I chew gum - sugar-free with xylol (sp?) seems to help with the saliva. Biotene makes a gum that you can get from Drugstore.com. Kinda blah in taste. If you can handle it - the 'burn' - try something like one of the mint 'fresh mouth'/'clean teeth' sugar-free gums.