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#52681 07-16-2002 01:02 AM
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My mother had surgery in February and has very little feeling on the side of her mouth where the surgery was done. She had radiation before that so her mouth is in pretty sad shape. She has a problem with drooling and it has caused irritation around the outside of her mouth. I have noticed it has really gotten bad in the last couple of weeks. The drooling isn't as bad as she thinks, but she wipes her mouth all the time to make sure there is nothing there. Has anyone encountered this problem and is there some kind of cream or medicine that would help with this problem. She has used vaseline, but it doesn't seem to help very much. I think she needs something that will stay on through all the wiping.

Thanks


Vince
#52682 07-16-2002 02:13 AM
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I too experienced the drooling problem. I don't know of any type of cream to recommend. My drooling has gotten better which in my case is probably due to the radiation drying up the saliva. After my surgery but before the radiation the drooling was especially bad when I slept, I used to wake up with my ear in a puddle. smile The drooling does improve after some time and possibly some of the feeling may come back.


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
#52683 07-16-2002 03:46 AM
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Vb.......I really didn't have any drooling problems but that is probably because I don't have a drop of saliva in my mouth! frown Anyway, I was thinking that maybe Aloe vera might be something soothing to put on the irritation on the outside of your Mom's mouth. I use the Aloe vera plant on lots of scrapes, bites, irritations and it works well for me. Aloe vera from the stem of a plant is quite sticky but I don't know if it would remain on your Mom's skin with all the wiping. It's worth a try. Good luck ! SIncerely, Donna


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#52684 07-16-2002 04:05 AM
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The drooling isn't from saliva. Like you it's pretty much of a desert inside of her mouth. She has a hard time swallowing what with the jawbone, floor of her mouth and tongue all removed, rebuilt and otherwise messed with. So when she thinks everything is swallowed back out it comes and she starts wiping away. Since she can't feel anything she keeps wiping all the time to make sure. Because of the major eating problems she has chosen not to remove her feeding tube and is still taking two cans of ENSURE Plus everday, but continues to lose weight. I will tell her to try the Aloe vera, and hope she mentions it to her doctor next week when she is getting her monthly check up and maybe he can suggest something too.
Thanks for the suggestions.


Vince
#52685 07-16-2002 01:01 PM
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Is she eating in addition to the two cans of ensure plus? If not, she needs to try to drink more than that. (I'm a fine one to talk, I had a hard time eating much even with the feeding tube and lost weight for a long time).


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
#52686 07-16-2002 07:33 PM
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I'm not current for people of her age, but for the average 50 year old, you need to put down a minimum of 1500 calories a day to tread water weight and energy wise. Anything less and you are not going to get the proper nutrition, and you will lose weight. The average can of Ensure is between 200 and 250 calories. You need to be in the 6-8 cans a day level to just get by. Supplemented by my favorite...ice cold slippery peach slices out of the can in heavy syrup, you can get the total calories up there. They slip down the old throat without an issue, and cool the sores off on the way. Some combination of all this needs to get the total caloric intake up to the proper levels.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#52687 07-17-2002 12:55 AM
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Thanks for the concern, she is eating but with a lot of difficulty and frustration. She uses the ENSURE as a supplement, because she is still losing weight. She won't eat with anyone else around because she is embarassed, but she eats apple sauce, baby food and when she eats any kind of "normal food" she purees it, but she doesn't seem to get much enjoyment out of it. She says that things she never used to care about like potato chips she now would sell her soul for, but she doesn't even attempt anything that hasn't been pureed and otherwise rendered unrecognizable. Hopefully over time it will get a little better, but she struggles on in pretty good spirits.


Vince
#52688 07-17-2002 04:01 AM
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VB, Just a few more suggestions for regular food and trying to get it down. Mashed potatoes with lots of gravey worked. Also cream of wheat with milk, oatmeal with milk, puddings and of course the old standby milk shake. As I got a little better I added creamed soups made with milk and these little cheese cakes that you can buy. You can also keep her calorie count up by having her sip on juices during the day. I did not have RAD, but still had a really hard time eating for quite awhile. I too had the bottom of my mouth rebuilt and part of my tongue removed. She has to realize that eating is going to be a slow process. I used to tell my husband that by the time I got done my breakfast, it was time to make my lunch. Hope this helps a little. Take care. Anne.


Anne G.Younger
Life has never been better.
#52689 07-17-2002 04:11 AM
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You mentioned that she is still losing weight, which means her combination of blended foods and Ensure is under the maintenance number of calories. For sure she won't get any pleasure out of her current eating restrictions, but at some point the loss of weight and nutrients will have negative consequences for her health. When I was in that boat, I kept a pad and pencil in the kitchen on which I kept a meal, by meal count of my calories, Ensure, blender drinks etc. If by 5 in the afternoon I hadn't received 2000 calories, then the extra cans of Ensure and the bag came out again to get me up there. Given my mood at the time and my depression, if Ingrid hadn't been on top of me about eating, I would have just blown it off and not put down the calories...I didn't like it, didn't enjoy it, it didn't taste good, and I couldn't have given a damn less about it..... The log kept me honest and my nutrition and weight where it should be. She even had me counting the calories of everything that went into my blender drinks, One scoop of protein powder 100, four strawberries 40, one banana 45, one cup of whole milk


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#52690 07-17-2002 04:54 AM
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Thanks for the advice from everyone. Anne my mother says the same thing about meal time. Once she finishes one it's time to start preparing the next. Pretty much all she has time for over the course of a day. Luckily, I guess, old Helen went into this adventure carrying extra pounds, a battle she fought most of her adult life until she started all this. Since last May she has lost about 60 pounds and if her weight doesn't stabilize soon she will be looking at trouble I'm sure. My sisters and I encourage her to keep plugging away at the eating thing, but I think sometimes the frustration level gets the better of her. You can lead a horse to water, etc..... confused


Vince
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