Burning & Stinging when Eating

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Drivingdaisy
Drivingdaisy Member Posts: 263
in Head and Neck Cancer #1

Hi, I'm Lisa.    I am 1 month out from treatment for tonsil cancer.  I had a PEG tube put in at the 3rd week of treatment due to horrendous mouth sores/Mucusosis.  At one point, I could not even drink water.  Since finishing treatment ( 7 wks Radiation, 6 chemo) I have been trying hard to introduce foods and drinks by mouth to my diet.  Started with just the shakes, thin cream soups, and a little cottage cheese, most other things seemed to burn my mouth some.  By the end of the 3rd wk, I introduced thicker cream soups, pudding, some yogurt, applesauce, and fruit cups.  This week (4th) I have done the above but tried to add some tuna salad, chicken to the soup, scrambled eggs, and mac & cheese.  Didn't do well.  Only a couple forkful. The burning kept me from finishing.  I've also noticed that the other foods I was eating were also burning some.  My Speech Therapist feels it is the muscles and nerves reacting and tightening up.  I have been doing the excersizes she has given me and I did move my mouth and swallowed as much as possible during treatment since I did not want to get Trismus.  Has anyone else experienced this burning/stinging pain while eating/ drinking?  If it is nerve and muscle, will the Gabapention  help? Or am I just pushing it too fast?  I can, swallow, chew, smell, and taste.......I'm hungry any ideas would be greatly appreciated.  Thank you.

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  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited May 2016 #2
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    Gabapentin for nerves

    Does Gabapentin help with the nerves and muscles in the mouth and throat?  Your opinions are greatly appreciated.  Thank you.    Lisa

  • SusanUES
    SusanUES Member Posts: 125
    #3
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    Whoa...slow down!

    Lisa, I am amazed by your fortitude!  But I think you are moving way too fast.  I didn't even attempt bites of solid food until my second month and could only eat those with lots of liquids to wash it down.  This is a very slow process...be kind to yourself.  Stick with power shakes and try melon (watermelon especially). Melons are mostly liquid so you can mush them into tiny amounts of tuna salad, even egg salad.  Everything tasted like crap to me for months so it really made no difference.  Also, melon will not cause burning and stinging, unlike citrus fruits.   I also found chickn liver quite doable...I would mix it in with soup to add bulk and collagen.  Just be sure to mash it well while warming the soup.

    Sadly, I did not have success with Gabapentin so I used the Liquid Oxy exclusively.  Hang in, girl...this will all be a bad memory soon! 

  • LiseA
    LiseA Member Posts: 266
    edited May 2016 #4
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    Oh you poor thing. Sounds

    Oh you poor thing. Sounds miserable.  Hope you find something that works soon, and that will not increase the burning and stinging.  At least you're over radiation, and now it's time to heal.  Thinking of you. The other Lisa :-)

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited May 2016 #5
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    If it still hurts....

    ...it's too early.  Everybody has a timeline, some shorter....some longer.  I remember thinking "if only I could eat what I choose and have it not sting"....once the stinging was done, I thought "if only I could taste something".....Eat what you can for now, knowing that every week, it will improve a little on certain things and other things will have to wait.  I remember being SO hungry, and watching the Food Channel every night....saying over and over....I'm going to make that.....I'm going to try that.....LOL.  The one thing I did keep in mind tho, was that is was going to get better at it's own speed....and I would eventually be able to eat what I want. 

    And here's another thing....last spring at this time, my taster was at about 50%-60%....I could eat Mexican food, but Italian food burned.  Salads were so so since I don't have a whole lot in saliva, and most dressings burned.  Now it is May of the following year....my taster has hit 95%....this is my 4th year out of treatment and I can finally taste food the way it's supposed to be tasted. 

    Every week experiment with what you couldn't do last week....you can pretty much expect something on that list will finally be ok....and it just goes that way for pretty much the first year.

    p

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #6
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    Too Fast

    Thank you Susan, LiseA, & Phrannie for the input.  So glad to talk with others who have been through this or are going through this now.  I so wish I would have found this forum before my treatment......so much great information and support.   Guess I am pushing it. I use to get so jealous during Chemo watching people eat sandwiches, hamburgers, chips, and cookies.  Could not wait till treatment was done, mouth healed, to EAT.  Thank you for the more realistic timeline.  Guess we'll see if the Gabapentin helps at all.  I am still on a low dose of Morphine ,extended-releasE. Had hoped to wean off soon.  Guess I will just hold off till the burning and sore throat get better.  Again, thank you so much for your input.  Hugs out to all of you.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
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    eating

     

    Drivingdaisy,

     

    Try everything (in little bites) but be happy you are here.

     

    I struggled to eat normally for 7 months, I tried all the H&N suggestions, but frankly could not stand the feel and taste of most foods.  I mainly drank smoothies and traveled around with an igloo cooler full of protein drinks.

     

    I had dinner with my parents every Sunday, a dinner which consisted of about 3 bites total.  My favorite 1st food after treatments was tomatoes, cucumbers and olive oil, go figure.  Point being, you pretty much must find your own way.

     

    At month 7 I was out on a job and had no smoothies or protein drinks and I ordered a turkey sandwich that turned out to taste great.  Just like that my “new normal” returned me to the eating world and it continues to improve.

     

    Good luck,

     

    Matt

     

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #8
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    Burning seems to be getting worse....possible scatter burns ?

    Starting Month 2: Recovery.

    Since I last posted, it seems as if the stinging/discomfort in the mouth and now especially the tongue is getting worse.  In an attempt to have the feeding tube taken out, I have been just eating/drinking through my mouth for the last week and 1/2.  Listening to the above posts, I did slow down and went back to just thin protein shakes and cream soups, cottage cheese, and a little yogurt.  Yesterday the burning was actually painful just drinking shakes and few bites of cottage cheese.  It mostly effects the tongue (top, sides, base) and by dinner the back sides of the throat especially the more radiated side (left).  Thinking nerves/ muscles as PT mentioned but after reading about "scattered burns" on this forum, I am wondering if that could also be a cause.  I had no protection during treatment.  My Rad Onocologist didn't believe fluoride or trays did anything to help during treatment. During treatment my tongue and cheeks were so swollen, filled with sores and raw areas (probably burns).  

    Feeling sore, hungry, and frustrated.  May have to use "The Tube" again since I have lost some more weight, along with feeling tired and fatigued.  Will be seeing my 2 Onocologists and PT this week. Questions I should be asking?

  • smccranie
    smccranie Member Posts: 5
    #9
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    Drivingdaisy said:

    Burning seems to be getting worse....possible scatter burns ?

    Starting Month 2: Recovery.

    Since I last posted, it seems as if the stinging/discomfort in the mouth and now especially the tongue is getting worse.  In an attempt to have the feeding tube taken out, I have been just eating/drinking through my mouth for the last week and 1/2.  Listening to the above posts, I did slow down and went back to just thin protein shakes and cream soups, cottage cheese, and a little yogurt.  Yesterday the burning was actually painful just drinking shakes and few bites of cottage cheese.  It mostly effects the tongue (top, sides, base) and by dinner the back sides of the throat especially the more radiated side (left).  Thinking nerves/ muscles as PT mentioned but after reading about "scattered burns" on this forum, I am wondering if that could also be a cause.  I had no protection during treatment.  My Rad Onocologist didn't believe fluoride or trays did anything to help during treatment. During treatment my tongue and cheeks were so swollen, filled with sores and raw areas (probably burns).  

    Feeling sore, hungry, and frustrated.  May have to use "The Tube" again since I have lost some more weight, along with feeling tired and fatigued.  Will be seeing my 2 Onocologists and PT this week. Questions I should be asking?

    Burning and sores

    I have the same problem and Magic Mouthwash was a game changer for me.  I would swish with it before a meal and it gives me relief enough to eat. It is not 100%, but does help. With the saliva still not back fully some foods like bread, chips, peanuts are a big problem to eat. I cannot eat anything spicy or acidy. The Magic Mouthwash numbs the mouth and I alwaysme eat more solid foods. It is trial and error on what I can eat. I get it from the pharmacy at my cancer center. Hope this helps.

  • SusanUES
    SusanUES Member Posts: 125
    #10
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    Oh, you poor guys...

    I truly feel your pain.  The burning and mouth sores went on for months with me and I know how awful it is. I can't say I have any new and wonderful solutions...it's basically a waiting game.  My oncologist prescribed Liquid Oxy and I would take that at night before attempting any meals.  And I emphasize "attempting" since most ended up with me throwing dinner out and reverting to melted vanilla ice cream and Scandi.  So sorry you are going through this...but trust me, it will get better.  Very slowly but you will one day be eating solid foods again.  They may not taste the same, but the satisfaction will be there.

  • LiseA
    LiseA Member Posts: 266
    edited May 2016 #11
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    Hope today is a little better

    Hope today is a little better  you. 

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #12
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    Slow and Steady gets it done

    Drivingdaisey,

    I am glad to read that you are out of treatment now, roughly one month out. Please keep in mind that we "Cook" from anywhere between 4-8 weeks after our final treatment. The treatments hit us harder at the end as they are the sum of all, so we may not be going for treatment, but we are getting hit with the kitchen sink.

    One thing I found that helped a little bit for me when I ate anything, was to let it rest until it was room temperature. The cold or hot foods really affected my mouth and tongue to the point of tears, once I made the adjustment, it was better. I still allow my foods to rest and I am 11 years out, but it is habit now, I can tolerate ice cream or soups but choose to let everything rest for a spell, just my routine.

    Another poster many years ago suggested that because we are healing and at different speeds we should try taste testing at a Chinese Buffet or similar. I listened and would go once a month and sample different foods to see what worked or didn't work. Eventually, I learned what I could handle. 

    My Best to You and Everyone Here

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