PEG 2 yrs, Not eating ANY foodHelp

Chris and Marianne
Chris and Marianne Member Posts: 25
in Head and Neck Cancer #1

Hi, I don't know what to do. I was on here 2 yrs ago when DH was going through chemo/Rad for BOTC HPV+. You all were very helpful. His treatments ended almost 2 yrs ago. All tests are good. but he has no saliva, bad or no taste and says food burns his throat. He is still on the tube and eats NOTHING. He is ok with it but I am so worried for him. How long can this go on?

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Comments

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

    I am 2 ½ years on my PEG and it has been a blessing to me. I travel a lot and carry a Nutribullet with me where ever I go. Just stop and get a hamburger and blend it in my Nutribullet and down the through the PEG Tube it going. To me it is all about the way you look at things, and I am not going to let something like not being able to swallow keep me down. I want to enjoy life as much as I can, positive thinking and a positive attitude can help the brain kept strong and going. Also a lot of prayer from the my Lord up above.

     

    Tim

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #3
    Hondo said:

    Hi Chris

    I am 2 ½ years on my PEG and it has been a blessing to me. I travel a lot and carry a Nutribullet with me where ever I go. Just stop and get a hamburger and blend it in my Nutribullet and down the through the PEG Tube it going. To me it is all about the way you look at things, and I am not going to let something like not being able to swallow keep me down. I want to enjoy life as much as I can, positive thinking and a positive attitude can help the brain kept strong and going. Also a lot of prayer from the my Lord up above.

     

    Tim

    Hamburger?

    I didn't know you can put blended food in tube. He just uses the nutrical from the health insurance. Don't your throat muscles get atrophied if you don't eat?

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    Chris and Marianne said:

    Hamburger?

    I didn't know you can put blended food in tube. He just uses the nutrical from the health insurance. Don't your throat muscles get atrophied if you don't eat?

    Yes they do

    Inability to eat should be thoroughly evaluated and treated if possible.   Has he been through a workup for the problem.  If so, what did they find?  And if not, it high time to get back in and get proper attention to this.  You can live forever with just a tube, but why would you want  to do that unless you had no choice?

     

    best to you

     

    Pat

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #5
    not eating

    Anything he tries either tastes bad or is too dry due to lack of saiva, or it burns his throat when he swallows. All the oncologists say is that he should be able to eat, keep trying. I think he should go to another doctor but I don't know what kind?

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    Chris and Marianne said:

    not eating

    Anything he tries either tastes bad or is too dry due to lack of saiva, or it burns his throat when he swallows. All the oncologists say is that he should be able to eat, keep trying. I think he should go to another doctor but I don't know what kind?

    Wow

    Pardon me for being blunt, but this is not an acceptable answer after 2 years.  I am now, finally, completely dependent on a G  tube, but my history is not like his, so the comparison is, in the fashion, not appropriate.  Before my tumor advanced to where I could not swallow I was on a liquid diet for two years.  You don't have to have solid food.  That diet took some real work, but it beat being on the G tube I promise you.

    He needs referral to a nutritionist, and a speech/swallowing therapiist.  They are to be found in a lot of different hospitals.  It doesn't take a teaching hospital to get this kind of help.  My original referral was from my Family doctor to one such.

    Why does it still burn to swallow after two years. Better answers than what they have been telling him are necessary.  He may need to simply see someone else to get a team reengaged in working out these problems, if that's all that's been said/done after all this time.

     

    Because yes, he should be able to eat.  He has tried.  Now it should be up to them to determine why trying by itself hasn't worked.

     

    Pat

     

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Chris and Marianne said:

    not eating

    Anything he tries either tastes bad or is too dry due to lack of saiva, or it burns his throat when he swallows. All the oncologists say is that he should be able to eat, keep trying. I think he should go to another doctor but I don't know what kind?

    Hi Chris

    Pat raised a good question did he get an evaluation yet. I am an old timer and have learned a lot over the years of dealing with my C, but not everyone is the same. With me all I see is my ENT every 3 months; she keeps up with me making sure nothing new starts to grow in my sinus. I am a very active person for having cancer as many times as I did and for not being able to swallow as I am always on the go. If you are not getting the help you need from your doctors get a second opinion; like Pat said have him see nutritionist, and a speech therapist, his doctors should have done this a log time ago.

     

    All the best to you and please stay in touch

    Tim

  • thennies61
    thennies61 Member Posts: 285
    #8
    longtermsurvivor said:

    Wow

    Pardon me for being blunt, but this is not an acceptable answer after 2 years.  I am now, finally, completely dependent on a G  tube, but my history is not like his, so the comparison is, in the fashion, not appropriate.  Before my tumor advanced to where I could not swallow I was on a liquid diet for two years.  You don't have to have solid food.  That diet took some real work, but it beat being on the G tube I promise you.

    He needs referral to a nutritionist, and a speech/swallowing therapiist.  They are to be found in a lot of different hospitals.  It doesn't take a teaching hospital to get this kind of help.  My original referral was from my Family doctor to one such.

    Why does it still burn to swallow after two years. Better answers than what they have been telling him are necessary.  He may need to simply see someone else to get a team reengaged in working out these problems, if that's all that's been said/done after all this time.

     

    Because yes, he should be able to eat.  He has tried.  Now it should be up to them to determine why trying by itself hasn't worked.

     

    Pat

     

     

    I agree with Pat.My surgen

    I agree with Pat.My surgen sent me to a speach/swallowing specialist.She had me swallow differnet liquids and watched from an x-ray which was pretty cool.I was able to swallow so she had me swallowing different liquids then mushed solids.She also hooked me up to give my throat a slight shock.But the thing is he needs to go and find out whats going on.They can help and it's worth everything to try

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9

    C&M,

    Most food felt awful and tasted icky for 7 months and overnight things changed and the feel and taste was differently normal.

    Side note, I started swallowing and drinking water on day one (treatment) and I was constantly trying foods from day one (post).

    Your condition sounds more serious, better find a good doc

    Best,

    Matt

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #10
    longtermsurvivor said:

    Wow

    Pardon me for being blunt, but this is not an acceptable answer after 2 years.  I am now, finally, completely dependent on a G  tube, but my history is not like his, so the comparison is, in the fashion, not appropriate.  Before my tumor advanced to where I could not swallow I was on a liquid diet for two years.  You don't have to have solid food.  That diet took some real work, but it beat being on the G tube I promise you.

    He needs referral to a nutritionist, and a speech/swallowing therapiist.  They are to be found in a lot of different hospitals.  It doesn't take a teaching hospital to get this kind of help.  My original referral was from my Family doctor to one such.

    Why does it still burn to swallow after two years. Better answers than what they have been telling him are necessary.  He may need to simply see someone else to get a team reengaged in working out these problems, if that's all that's been said/done after all this time.

     

    Because yes, he should be able to eat.  He has tried.  Now it should be up to them to determine why trying by itself hasn't worked.

     

    Pat

     

     

    Not eating

    Thanks so much Pat, Tim and others who replied. Chris has had the swallowing test/ X-ray thing, met with swallowing & speech therapists and nutritionists months ago.  :-(  He says they just keep saying He should be able to eat...keep trying.

    thanks so much for your input,

    Marianne 

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #11
    longtermsurvivor said:

    Wow

    Pardon me for being blunt, but this is not an acceptable answer after 2 years.  I am now, finally, completely dependent on a G  tube, but my history is not like his, so the comparison is, in the fashion, not appropriate.  Before my tumor advanced to where I could not swallow I was on a liquid diet for two years.  You don't have to have solid food.  That diet took some real work, but it beat being on the G tube I promise you.

    He needs referral to a nutritionist, and a speech/swallowing therapiist.  They are to be found in a lot of different hospitals.  It doesn't take a teaching hospital to get this kind of help.  My original referral was from my Family doctor to one such.

    Why does it still burn to swallow after two years. Better answers than what they have been telling him are necessary.  He may need to simply see someone else to get a team reengaged in working out these problems, if that's all that's been said/done after all this time.

     

    Because yes, he should be able to eat.  He has tried.  Now it should be up to them to determine why trying by itself hasn't worked.

     

    Pat

     

     

    Burns swallowing

    The last Dr. Said that the throat gets sore from not being lubricated from saliva...drink more water.

    on another note, he Forced himself to eat a poached egg this morning. I guess that's a pluss.

    marianne

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #12
    Not eating

    Chris has had the swallowing test and seen speech therapist, done the physical therapy... The taste of all food bothers him, is too dry, or burns his throat. The last Dr said the throat is irritated due to lack of saliva/lubrication...

    Could it be that he just has to keep Forcing himself to eat and it will get better?

    thanks for all your input I'm at a loss.

    marianne

  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    Chris and Marianne said:

    Not eating

    Chris has had the swallowing test and seen speech therapist, done the physical therapy... The taste of all food bothers him, is too dry, or burns his throat. The last Dr said the throat is irritated due to lack of saliva/lubrication...

    Could it be that he just has to keep Forcing himself to eat and it will get better?

    thanks for all your input I'm at a loss.

    marianne

    saliva/lubrication

    Something you might want him to try is Stopper4 Dry Mouth Spray. I been using it for the last 6 years and it really helps me mostly at night when sleeping. It is worth a try I get it at http://www.drugstore.com/stoppers-4-dry-mouth-spray/qxp94841?catid=183812

    Tim

  • hwt
    hwt Member Posts: 2,328 Member
    #14
    Hondo said:

    saliva/lubrication

    Something you might want him to try is Stopper4 Dry Mouth Spray. I been using it for the last 6 years and it really helps me mostly at night when sleeping. It is worth a try I get it at http://www.drugstore.com/stoppers-4-dry-mouth-spray/qxp94841?catid=183812

    Tim

    What about drinking?

    Is he able to do smoothies or shakes? Has he tried magic mouthwash which is a perscription that numbs the mouth/throat so he can eat? 

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #15
    No Saliva

    Marianne,

    I too have no saliva what so ever, so eating can be a chore. I learned that what I eat and what temperature I eat my foods make a big difference. First, I eat all my food at room temperature. I also make sure that any food I eat is of a moist content. I eat scrambled eggs, but I use sugar free syrup on them to help them slide down easier, again, at room temperature.

    I can eat a piece of bread, but must use a lot of water or coffee to get it down. I seem to fill up on fluids faster than the food I eat. I stay away from anything spicy, ketchup can be spicy to me on different days. My taste buds are still confusing to me after many years, sometimes I can taste one food, and the next time I can't.

    Have Chris try eating very moist foods. I eat hot oat meal for breakfast after it has cooled. As the others stated above, keep at it and work this out. If the Doctors say he should be able to eat, then he needs to focus on that and not rely on the tube as much.

    My Best to Both of You and Everyone Here

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #16
    Thank You

    Thank you all so very much for you advice and valuable information. I am passing it all on to Chris and I will keep you posted.

    P.S. tonight he tried an icecream sandwich- it wasn't a hit.  tomorrow's another day...

    Keep up the good work,

    Marianne

  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    Chris and Marianne said:

    Thank You

    Thank you all so very much for you advice and valuable information. I am passing it all on to Chris and I will keep you posted.

    P.S. tonight he tried an icecream sandwich- it wasn't a hit.  tomorrow's another day...

    Keep up the good work,

    Marianne

    One day at a time

    My Wife would always sing to me One day at a time sweet Jesus that is all we are asking from you. After a while I found myself starting to sing it when things would get really bad, somehow it would helps pull me back out of depression.

    Tim  

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #18
    Hondo said:

    One day at a time

    My Wife would always sing to me One day at a time sweet Jesus that is all we are asking from you. After a while I found myself starting to sing it when things would get really bad, somehow it would helps pull me back out of depression.

    Tim  

    One Day at a Time

    Realy good advice Tim. Thanks again,

    Marianne + Chris

  • ahollie
    ahollie Member Posts: 84
    #19
    the only thing allen could

    the only thing allen could really get down for awhile was fried eggs...i would fry them over easy in bacon grease and i think they just slid down to be truthful....he is eating some things now but he doesnt like to...doesnt taste good...hurts and he doesnt feel hungry..just plain doesnt wanna...lol

    i nag him to no end... he will drink shakes but still..only if i nag...so..he gets a marshmellow santa if he eats something else...seems to work some..baahaaaaaa...not sure what i am going to do now that christmas is over...hopefully they will have marshmellow bunnys out soon...lol

    keep pushing...Allen loved getting his tube out...hopefully they will learn to LIKE to eat again...

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
    #20
    ahollie said:

    the only thing allen could

    the only thing allen could really get down for awhile was fried eggs...i would fry them over easy in bacon grease and i think they just slid down to be truthful....he is eating some things now but he doesnt like to...doesnt taste good...hurts and he doesnt feel hungry..just plain doesnt wanna...lol

    i nag him to no end... he will drink shakes but still..only if i nag...so..he gets a marshmellow santa if he eats something else...seems to work some..baahaaaaaa...not sure what i am going to do now that christmas is over...hopefully they will have marshmellow bunnys out soon...lol

    keep pushing...Allen loved getting his tube out...hopefully they will learn to LIKE to eat again...

    Keep pushing

    Thanks, Chris doesn't like to eat either. Hates the taste & the burning. I push and occasionally an egg over easy or Campbell's Cream Of Chicken Soup(yuck). Just have to keep hoping and praying.

    thanks, Marianne & Chris

  • wmc
    wmc Member Posts: 1,804
    #21
    Chris and Marianne said:

    Keep pushing

    Thanks, Chris doesn't like to eat either. Hates the taste & the burning. I push and occasionally an egg over easy or Campbell's Cream Of Chicken Soup(yuck). Just have to keep hoping and praying.

    thanks, Marianne & Chris

    Comment on the YUCK

    All joking aside, if he can get the Cream of chicken soup down keep it up. That is what helped me. Now I had no problems with tast, just I was on liquid only for about two weeks after surgery. The whole can of soup is 300 cal. I would only put in 3/4 of the water so it had more tast and was thicker. It has twice the cal. that chicken noodle and other soups do. I needed lots of cal. and it had to be liquid so, milkshakes [a large had 700] and the soup was 300 per can, so I ate 3 full cans. Pudding had 100 to 150 per little cup. The lemon might burn, but the butterschotch might work, also jello, the kind that you don't refrigerate was good to snack on. I am small frame and went from 152 to 126 [-17%] so I look very skinny and need to gain weight, but steady not just fast. It also helped with learning to swallow all over again. [I had a laryngectomy and had to learn hoe to eat again] Even popcicles help, they cool and numb the throat and keep it lubricated as well. Oh, I still have the soup [cream of chicken] everyday as one of my meals

    Christmas is over but the Peeps for easter are out, and might work.  Just some thoughts:

    Bill

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