Do mouth sores return ?

Clearblue
Clearblue Member Posts: 186
in Head and Neck Cancer #1
Do mouth sores return (post radiation) after they had dissapeared? or could it be a mouth reacting to food again thing?
Thought we were done with them!
sorry in and out quick question.
Clear B.

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Clear

    I had mouth sores come and go for up to two years after my last treatment, I question my Dr about it but he could not tell me why. I figure it was just the radiation continuing to come out even up to two year later; I don’t get them anymore so I guess and hope they are gone for good.

    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
    ClearBlue,
    Sorry to hear
    ClearBlue,

    Sorry to hear about the mouth sores returning. Praying they heal quickly and never return.

    Debbie
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    jim and i said:

    ClearBlue,
    Sorry to hear
    ClearBlue,

    Sorry to hear about the mouth sores returning. Praying they heal quickly and never return.

    Debbie

    Mouth sores.
    Mouth sores can pop up after radiation from eating certain foods that are acidic, or that have certain enzymes in them that may cause irritation on the tongue or in the mouth. Things that can cause irritation:

    Foods that are too hot in temperature.
    Fruits with a lot of acid like, tomatoes, citrus, strawberries....Also 'sour' stuff.
    Vinegar and things made with it like salad dressing
    Fruits with the enzyme papain, like pineapple, kiwi, papaya.
    Mangos, the skin contains the same chemical compound found in poison ivy.
    Improperly hulled cashew nuts. (same reason as mangoes)
    Anything 'hot' like black pepper, chili peppers, and any other spicy pepper.

    Your wife, especially with her Fanconi Anemia, should have any mouth sore, white patch (leukoplakia), red patch, or rough spot in her mouth checked if it doesn't go away after two weeks.
  • ian1511
    ian1511 Member Posts: 42
    #5
    sweetblood22 said:

    Mouth sores.
    Mouth sores can pop up after radiation from eating certain foods that are acidic, or that have certain enzymes in them that may cause irritation on the tongue or in the mouth. Things that can cause irritation:

    Foods that are too hot in temperature.
    Fruits with a lot of acid like, tomatoes, citrus, strawberries....Also 'sour' stuff.
    Vinegar and things made with it like salad dressing
    Fruits with the enzyme papain, like pineapple, kiwi, papaya.
    Mangos, the skin contains the same chemical compound found in poison ivy.
    Improperly hulled cashew nuts. (same reason as mangoes)
    Anything 'hot' like black pepper, chili peppers, and any other spicy pepper.

    Your wife, especially with her Fanconi Anemia, should have any mouth sore, white patch (leukoplakia), red patch, or rough spot in her mouth checked if it doesn't go away after two weeks.

    Encyclopedic!
    Wow Sweet,

    That was very informative. I swear, I was having what felt like very small growths that would be felt by my tongue on the roof of my mouth after I'd eat something. They would last for a few hours and then vanish. It only seemed to stop in the last week. Now, I only will get some slight irritation, if I eat certain foods. I have not paid enough attention to what. I have been eating lots more fresh tomatoes, since they're in season. I love them in balsamic vinegar and oil.

    Darren
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    ian1511 said:

    Encyclopedic!
    Wow Sweet,

    That was very informative. I swear, I was having what felt like very small growths that would be felt by my tongue on the roof of my mouth after I'd eat something. They would last for a few hours and then vanish. It only seemed to stop in the last week. Now, I only will get some slight irritation, if I eat certain foods. I have not paid enough attention to what. I have been eating lots more fresh tomatoes, since they're in season. I love them in balsamic vinegar and oil.

    Darren

    Darren
    A couple moths ago, I tried fresh little grape tomatoes and paid dearly. I had a bump and a large sore on my tongue. I can sometimes do tomato sauce, but I need cream, butter, or milk to balance the acidity. So it's more like a cream with tomato sauce added in.

    The tomatoes in the garden look so good, but I'm scared to try them. Lol
  • ratface
    ratface Member Posts: 1,337 Member
    #7
    sweetblood22 said:

    Darren
    A couple moths ago, I tried fresh little grape tomatoes and paid dearly. I had a bump and a large sore on my tongue. I can sometimes do tomato sauce, but I need cream, butter, or milk to balance the acidity. So it's more like a cream with tomato sauce added in.

    The tomatoes in the garden look so good, but I'm scared to try them. Lol

    They really never leave
    As I get at least one per week at almost 2 yrs post. The mouth tissue is very sensitive from the radiation and things inside your mouth have moved some, i.e. your gums come in contact with your teeth much more than before as things are thicker in there. I probably average one blood blister a week because of this or some food as sweet mentioned iritates the lining.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    sweetblood22 said:

    Mouth sores.
    Mouth sores can pop up after radiation from eating certain foods that are acidic, or that have certain enzymes in them that may cause irritation on the tongue or in the mouth. Things that can cause irritation:

    Foods that are too hot in temperature.
    Fruits with a lot of acid like, tomatoes, citrus, strawberries....Also 'sour' stuff.
    Vinegar and things made with it like salad dressing
    Fruits with the enzyme papain, like pineapple, kiwi, papaya.
    Mangos, the skin contains the same chemical compound found in poison ivy.
    Improperly hulled cashew nuts. (same reason as mangoes)
    Anything 'hot' like black pepper, chili peppers, and any other spicy pepper.

    Your wife, especially with her Fanconi Anemia, should have any mouth sore, white patch (leukoplakia), red patch, or rough spot in her mouth checked if it doesn't go away after two weeks.

    Hi Sweet
    I have problems with eating Pineapple, I love it but it doesn’t love me. Make my tongue brake out with little blisters all over. Funny I don’t seam to have a problems eating anything else.

    Hondo
  • Clearblue
    Clearblue Member Posts: 186
    #9
    Hondo said:

    Hi Sweet
    I have problems with eating Pineapple, I love it but it doesn’t love me. Make my tongue brake out with little blisters all over. Funny I don’t seam to have a problems eating anything else.

    Hondo

    !!
    Crumbs , what a bummer!Now a bit of sore throat too.
    So what do we do, suck on lettuce , lose another kilo,and wait till it goes again?!
    Clear
  • Clearblue
    Clearblue Member Posts: 186
    #10
    sweetblood22 said:

    Mouth sores.
    Mouth sores can pop up after radiation from eating certain foods that are acidic, or that have certain enzymes in them that may cause irritation on the tongue or in the mouth. Things that can cause irritation:

    Foods that are too hot in temperature.
    Fruits with a lot of acid like, tomatoes, citrus, strawberries....Also 'sour' stuff.
    Vinegar and things made with it like salad dressing
    Fruits with the enzyme papain, like pineapple, kiwi, papaya.
    Mangos, the skin contains the same chemical compound found in poison ivy.
    Improperly hulled cashew nuts. (same reason as mangoes)
    Anything 'hot' like black pepper, chili peppers, and any other spicy pepper.

    Your wife, especially with her Fanconi Anemia, should have any mouth sore, white patch (leukoplakia), red patch, or rough spot in her mouth checked if it doesn't go away after two weeks.

    Sweet
    "Checked up", till now has meant: the Onco looked in her mouth adn said, mouthsores.
    I dont think its white patchy , more like blistery.
    ut will check it out,
    tnx ,

    I think red is your color!
    Clear
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    Clearblue said:

    Sweet
    "Checked up", till now has meant: the Onco looked in her mouth adn said, mouthsores.
    I dont think its white patchy , more like blistery.
    ut will check it out,
    tnx ,

    I think red is your color!
    Clear

    Have you guys tried the
    Have you guys tried the l-glutamine? It really seems to work for me.
  • RickyM
    RickyM Member Posts: 2
    #12
    sweetblood22 said:

    Have you guys tried the
    Have you guys tried the l-glutamine? It really seems to work for me.

    Hello everyone, I just
    Hello everyone, I just signed up. I am 5 weeks post 33 Rad. and 4 Cisplatin. I want to eat so bad but the disappointment of the texture due to dry mouth is so discouraging. I tried tomato soup last night and a smoothie with strawberries and pineapple. Didnt get much down and today I have blisters on the roof of my mouth. Sounds like I tried all the worst foods. I have got to find something to eat, Dr says I cant get peg out until I can maintain my weight for 30 days on my own.
  • DrMary
    DrMary Member Posts: 531 Member
    #13
    RickyM said:

    Hello everyone, I just
    Hello everyone, I just signed up. I am 5 weeks post 33 Rad. and 4 Cisplatin. I want to eat so bad but the disappointment of the texture due to dry mouth is so discouraging. I tried tomato soup last night and a smoothie with strawberries and pineapple. Didnt get much down and today I have blisters on the roof of my mouth. Sounds like I tried all the worst foods. I have got to find something to eat, Dr says I cant get peg out until I can maintain my weight for 30 days on my own.

    Soo right
    Yep - tomatoes and strawberries and pineapple were probably the wrong things. Should you feel stupid? No - a lot of folks might have been able to deal with those. Should you try them (or other acidic fruits) again? Probably not for while.

    If you've been able to handle milk-based formulas through the PEG, I'd recommend something similar by mouth - even the hated Jevity or whatever. The point is not that you are trying to eat "real food" (I reluctantly agree that those are "real" for the purposes of this discussion) but that you can take in such food by mouth.

    Our nutritionist (since we pigheaded-ly refused the PEG) has said Jevity was not fun to take in by mouth (but was safe to do so) and so that we should try out Boost Plus or similar. We did - Ensure and Carnation were yucky but Doug could manage Boost Plus. Once he could manage that, we started with the home-made milkshakes. Thin ones at first - mostly milk with a bit of pure whey isolate and some maltodextrin - as time went on, these got thicker and higher calorie (I also threw in cream for calories, but avoid that if high-fat food used to give you heartburn). We found out the hard way that some of the weight-training shakes have various artificial sweeteners - Doug could tolerate none of them, including the "natural" ones, like Stevia.

    Try some cream of vegetable soup - good carrots and onions (I chose organic just to avoid more complications) sauteed in olive oil (or roasted in the oven) and then simmered in water or stock - puree in the blender with non-fat dry milk and (if you can handle it) cream. Plenty of vitamins and fiber and unlikely to set off any sores.

    Those are things that worked for us - there are some great recipes posted on Sweet's superthread; you just have to find what will work for you. Doug is almost back to fighting weight and he did a lot of that on liquids.

    A lot of fruit acids set off reactions in your very sensitive mouth (tomatoes are fruit, no matter what congress says). It will likely not last forever - Doug just had a white peach in his cereal yesterday and could both taste it and did not react to it. It's been a good 8 months post for him, so give it a bit of time.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    RickyM said:

    Hello everyone, I just
    Hello everyone, I just signed up. I am 5 weeks post 33 Rad. and 4 Cisplatin. I want to eat so bad but the disappointment of the texture due to dry mouth is so discouraging. I tried tomato soup last night and a smoothie with strawberries and pineapple. Didnt get much down and today I have blisters on the roof of my mouth. Sounds like I tried all the worst foods. I have got to find something to eat, Dr says I cant get peg out until I can maintain my weight for 30 days on my own.

    Hi Ricky
    Welcome to the family here at CSN, glad to have you with us. Everything takes a little time and most of your saliva will come back but you might always need a little water to wash it down with; we call it our new normal. Also at night you might want to try a dry mouth spray to help you sleep, I use Stoppers 4 and I get it on line at drugstore.com.

    Wishing you well
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #15
    Hondo said:

    Hi Ricky
    Welcome to the family here at CSN, glad to have you with us. Everything takes a little time and most of your saliva will come back but you might always need a little water to wash it down with; we call it our new normal. Also at night you might want to try a dry mouth spray to help you sleep, I use Stoppers 4 and I get it on line at drugstore.com.

    Wishing you well
    Hondo

    Ricky
    Hi there. Here is the link for the superthread. There are a lot of helpful links for food ideas and recipes under the nutrition/healthy eating/liquid nutrtion section:

    HNC  SUPERTHREAD

    Your doctor is wise to tell you that you need to maintain your weight with out the help of your peg for 30 days. I still drink at least half of my calories. In the begining you may just need to change your way of thinking about food prep and how you eat for a while. Take it easy and start slow with soft foods or purées that you don't need to chew too much or work at very hard, so that it doesn't aggravate your mouth any further.

    Think of using a mini chopper to mince food before cooking it, so that you have to chew less. Since digestion starts with chewing, and since we have lack of saliva, it's harder for us to chew up and swallow our food. Mincing vegetables prior really does help. Cooking them a little softer than you used to helps too. Things like summer squash, cailiflower, and broccoli are nutrtious, in season and usually slide down easy. Cooked sweet potato or yams, are chock full of vitamins and easy to eat. Things like Dr Mary's suggestion of creamed soups is excellent.

    Also drinking whole fruit and vegetable smoothies using a high speed blender or emulsifier is a great way to get in enough calories and nutrtion. I also blended my soups in it in the begining when all I could do was liquids. Something like a vitamix, HealthMaster or blendtec. Vitamix offers discounts for cancer patients, and I like my HealthMaster.


    THE FIRST SMOOTHIE ON THIS POST IS A GREAT ALL AROUND SMOOTHIE MEAL. I even did the nutrition analysis.



    It will take time. Rick, but you will get there. It is frustrating in the begining. Hang in there.
  • BJammin
    BJammin Member Posts: 5
    #16
    sweetblood22 said:

    Ricky
    Hi there. Here is the link for the superthread. There are a lot of helpful links for food ideas and recipes under the nutrition/healthy eating/liquid nutrtion section:

    HNC  SUPERTHREAD

    Your doctor is wise to tell you that you need to maintain your weight with out the help of your peg for 30 days. I still drink at least half of my calories. In the begining you may just need to change your way of thinking about food prep and how you eat for a while. Take it easy and start slow with soft foods or purées that you don't need to chew too much or work at very hard, so that it doesn't aggravate your mouth any further.

    Think of using a mini chopper to mince food before cooking it, so that you have to chew less. Since digestion starts with chewing, and since we have lack of saliva, it's harder for us to chew up and swallow our food. Mincing vegetables prior really does help. Cooking them a little softer than you used to helps too. Things like summer squash, cailiflower, and broccoli are nutrtious, in season and usually slide down easy. Cooked sweet potato or yams, are chock full of vitamins and easy to eat. Things like Dr Mary's suggestion of creamed soups is excellent.

    Also drinking whole fruit and vegetable smoothies using a high speed blender or emulsifier is a great way to get in enough calories and nutrtion. I also blended my soups in it in the begining when all I could do was liquids. Something like a vitamix, HealthMaster or blendtec. Vitamix offers discounts for cancer patients, and I like my HealthMaster.


    THE FIRST SMOOTHIE ON THIS POST IS A GREAT ALL AROUND SMOOTHIE MEAL. I even did the nutrition analysis.



    It will take time. Rick, but you will get there. It is frustrating in the begining. Hang in there.

    Mouth Sores
    Thanks for the superthread. I still get sores pop up 4 years after treatment. I've started using Biotene moisturizing mouth spray, but just ordered Stoppers 4 from Drugstore.com.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #17
    BJammin said:

    Mouth Sores
    Thanks for the superthread. I still get sores pop up 4 years after treatment. I've started using Biotene moisturizing mouth spray, but just ordered Stoppers 4 from Drugstore.com.

    BJammin
    You're welcome. One of these days when I run out of all the biotene I have, I want to order that stoppers4.

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