Eating when you have no saliva

yensid683
yensid683 Member Posts: 349
in Head and Neck Cancer #1
I'm 7 weeks out of rads, my sense of taste has returned, sweet and salt are normal, sour is off the charts and bitter a close second, but I think they're that way as there is no saliva generating at present. Sour causes the saliva glands to flood the mouth to dilute sour and make it tolerable, but with no saliva, the sour meter gets pegged.

I'm looking for help in adapting to eating normal foods (or at least soft ones) with a lack of saliva. I recall high school biology and that your salivary glands produce as soon as you put food in your mouth (maybe sooner if Pavlov was right) and you mix it with the food as you chew and then it lubricates as you swallow the bolus. With no saliva, even soft foods like scrambled eggs are hard to get down.

I'm trying to set up a strategy to mimic the actual saliva production so I can eat and swallow regular food and get off the PEG tube. (Dr will pull it once I'm off cans and maintaining my weight) Take a sip of warm water, put the food in and chew, add some more warm water as I chew and then if necessary some more water at swallow?

Anyone have tips to offer? I'm hungry for real food!

Thanks

Peter

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I haven't been able to eat anything for the last
    6 weeks, due to mouth sores from chemo...however, I was eating some when I was doing just Cisplatin and radiation. Most of what I ate, I diluted with a milk product (butter, sour cream, milk, cottage cheese)...Like baked potatoes LOTS of sour cream and butter....mac and cheese, but use milk to make it into a soupier mixture, then wash down with milk....shrimp salad (mac salad with shrimp in it), made soupier. Many veggies go down..they may be lacking taste...but they don't sting.

    My sister made me cheesy califlower soup, it was wonderful...easy to get down, and it had taste. Maybe try some home made creamy soups (you can try canned, but some people find them too salty).

    I can taste cheese, but need milk to wash it down.

    p

    PS...Milk....milk has been my elixar since June, once I rediscovered it (40 years I went without drinking it)...It's nutritious, doesn't sting, mixes with nearly everything...I zap it for 15 to 20 seconds in the microwave to take the ice cold off it...
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    I never had a PEG
    so didnt need to graduate from one, but I was on a liquid diet for a long time. I am still gradually working my way back toward a regular diet, now five months post rads, and have no reassurance yet I will make it there. Still, although I have to be creative in my meal planning, it gets the job done. Remember you dont have to be completely on solid food. I still supplement with ensure. oftentimes this happens because it takes me a long time to eat, and some occasions just done give me enough time.

    I have a chewing problem and a swallowing problem in addition to a low saliva problem, so there are many foods I know are beyond me. I dont even try them. Salad, white chicken meat, steak are on that list.

    I plan my meals in advance. Breakfast is easy because the selection of food can be very soft, and wet. Oatmeal. grits with butter. If eggs and hash browns, I make country gravy from those little packs of powdered gravy. In fact I keep some in the fridge ready made to add to other foods when i need to.

    I am the expert at making casseroles. They are all easy to swallow, the wetter, the better.

    Although I keep water available for when things get stuck, I prefer dairy products to help things slide down. Dairy is slicker than water.

    And my wife knows not to expect me to answer her while eating. I just cannot do that without choking, so my meals are amdeliberate effort. I have gone out to restaurants only.a few times since completion of treatment. I have carefully planned what restaurant, and what I would order somthat Ididnt get stuck with a situation I couldnt solve.

    Sorry for rambling. First, if you can do 2000 calories of ensure, you are on your way to freedome. Second lubricate everything you eat with the slickest compound you can find. Low salivais only part of the problem. The rest is that your swallowing mechanismisnt right yet.


    best

    Pat
  • Sam999
    Sam999 Member Posts: 319 Member
    #4
    longtermsurvivor said:

    I never had a PEG
    so didnt need to graduate from one, but I was on a liquid diet for a long time. I am still gradually working my way back toward a regular diet, now five months post rads, and have no reassurance yet I will make it there. Still, although I have to be creative in my meal planning, it gets the job done. Remember you dont have to be completely on solid food. I still supplement with ensure. oftentimes this happens because it takes me a long time to eat, and some occasions just done give me enough time.

    I have a chewing problem and a swallowing problem in addition to a low saliva problem, so there are many foods I know are beyond me. I dont even try them. Salad, white chicken meat, steak are on that list.

    I plan my meals in advance. Breakfast is easy because the selection of food can be very soft, and wet. Oatmeal. grits with butter. If eggs and hash browns, I make country gravy from those little packs of powdered gravy. In fact I keep some in the fridge ready made to add to other foods when i need to.

    I am the expert at making casseroles. They are all easy to swallow, the wetter, the better.

    Although I keep water available for when things get stuck, I prefer dairy products to help things slide down. Dairy is slicker than water.

    And my wife knows not to expect me to answer her while eating. I just cannot do that without choking, so my meals are amdeliberate effort. I have gone out to restaurants only.a few times since completion of treatment. I have carefully planned what restaurant, and what I would order somthat Ididnt get stuck with a situation I couldnt solve.

    Sorry for rambling. First, if you can do 2000 calories of ensure, you are on your way to freedome. Second lubricate everything you eat with the slickest compound you can find. Low salivais only part of the problem. The rest is that your swallowing mechanismisnt right yet.


    best

    Pat

    I also did not have PEG but
    I also did not have PEG but was on liquid diet for past two months. I do pretty much what others suggested, try to keep the food you eat Saucy/creamy/soupy. I find that with foods like that i can chew without water but need sip or water or milk to swallow it.

    I find that becuse of extra liquid, i get full sooner and can eat only small quatity so i supplement with protien smoothies. I read in one of the post that chinese food is easier to eat becuase it tends to be saucy. Planning to try a chinese takeout today. Tried maxican but that did not taste that good, so it seems all my taste is yet not back.

    I am able to eat most fruits. My sweet taste is still not fully back so everything taste a little less sweet.

    Sam
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #5
    Sam999 said:

    I also did not have PEG but
    I also did not have PEG but was on liquid diet for past two months. I do pretty much what others suggested, try to keep the food you eat Saucy/creamy/soupy. I find that with foods like that i can chew without water but need sip or water or milk to swallow it.

    I find that becuse of extra liquid, i get full sooner and can eat only small quatity so i supplement with protien smoothies. I read in one of the post that chinese food is easier to eat becuase it tends to be saucy. Planning to try a chinese takeout today. Tried maxican but that did not taste that good, so it seems all my taste is yet not back.

    I am able to eat most fruits. My sweet taste is still not fully back so everything taste a little less sweet.

    Sam

    Probably not much help...
    but I chased / added room temp milk to everything I ate as I ate. Sorry not much help other than that.

    Pat, Sam ...how on earth you got thru with no peg is amazing ...I'm jealous and in awe!!

    Best

    Tim
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Sam999 said:

    I also did not have PEG but
    I also did not have PEG but was on liquid diet for past two months. I do pretty much what others suggested, try to keep the food you eat Saucy/creamy/soupy. I find that with foods like that i can chew without water but need sip or water or milk to swallow it.

    I find that becuse of extra liquid, i get full sooner and can eat only small quatity so i supplement with protien smoothies. I read in one of the post that chinese food is easier to eat becuase it tends to be saucy. Planning to try a chinese takeout today. Tried maxican but that did not taste that good, so it seems all my taste is yet not back.

    I am able to eat most fruits. My sweet taste is still not fully back so everything taste a little less sweet.

    Sam

    Sam....I can't believe you tried Mexican so early
    in the game....the spicey would send me running for the hills. I'll be tho, that Chow Mein would be ok...all those veggies, and it's very saucey....man, this is making me hungry...(so what's new?? LOL)

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    No Rushing...
    It'll take as long as it takes...

    But some foods that I liked were creamy pastas...LOL, seafood pasta of course was tops. But I liked things like sliced peaches in light syrup, creamy grits and cheese grits, cream of wheat, soft mashed potatoes and beef gravy...

    Meats and bread took for ever because the were so dry...

    I'd have to take as ip of water with most every bite at first, which would also kill any potential taste I might have had.

    I also had no PEG like others mentioned above.

    Best,
    John
  • hwt
    hwt Member Posts: 2,328 Member
    #8
    Skiffin16 said:

    No Rushing...
    It'll take as long as it takes...

    But some foods that I liked were creamy pastas...LOL, seafood pasta of course was tops. But I liked things like sliced peaches in light syrup, creamy grits and cheese grits, cream of wheat, soft mashed potatoes and beef gravy...

    Meats and bread took for ever because the were so dry...

    I'd have to take as ip of water with most every bite at first, which would also kill any potential taste I might have had.

    I also had no PEG like others mentioned above.

    Best,
    John

    Milk
    I'm on the milk bandwagon.
  • dlygoblue
    dlygoblue Member Posts: 28
    #9
    I had a PEG
    Peter, I'll confirm the others' advice. Try eating softer foords to start (Jello, mashed potatoes, yogurt, soups, milk shakes, smoothies, etc.). You also might try finely chopping, or using a food processor on other solid foods (meat, chicken, fish). For me, it was more a texture issue, becuase my taste was gone. I had a PEG for about 3 months before I was able to eat enough to take it out.
    Hope this helps. David
  • Sam999
    Sam999 Member Posts: 319 Member
    #10
    dlygoblue said:

    I had a PEG
    Peter, I'll confirm the others' advice. Try eating softer foords to start (Jello, mashed potatoes, yogurt, soups, milk shakes, smoothies, etc.). You also might try finely chopping, or using a food processor on other solid foods (meat, chicken, fish). For me, it was more a texture issue, becuase my taste was gone. I had a PEG for about 3 months before I was able to eat enough to take it out.
    Hope this helps. David

    Hi Pharannie, i did not dare
    Hi Pharannie, i did not dare to try the spicy mexican. I just tried simple beans and cheese, but the beans still tastes different, could not eat it.

    I did try some other spicy food and it burned so much that i kept numbing my mouth for next 5 mins :)

    Tim, i think my case was little esier because i just had rads and no chemo. I was also overweight by 25 pounds so there was definately room to lose without problem :) . My doc had said if needed, we will put it in middle of the treatment. They also kept me at high pain meds so i could drink even if throat was a mush. At times i did wish i had one when it got really hard.

    I am trying new food everyday. Some taste good some not. So taste buds are still not completely working. Sweet is definately on the lower side, i have to add 3 times the sugar to have a sweet taste.

    Sam
  • yensid683
    yensid683 Member Posts: 349
    #11
    dlygoblue said:

    I had a PEG
    Peter, I'll confirm the others' advice. Try eating softer foords to start (Jello, mashed potatoes, yogurt, soups, milk shakes, smoothies, etc.). You also might try finely chopping, or using a food processor on other solid foods (meat, chicken, fish). For me, it was more a texture issue, becuase my taste was gone. I had a PEG for about 3 months before I was able to eat enough to take it out.
    Hope this helps. David

    I still have the PEG
    Thanks for all the comments and suggestions, I'll try some of these. I have found that a real easy meat to eat is (horrors of horrors) Spam. Slices about a quarter of an inch thick, and then cubed to the same quarter of an inch and they move down pretty well, plus the salty taste works! Scrambled eggs cooked with a slice of american cheese and the Spam makes for a tasty if challenging sounding omelet. Follow up with a cool (not cold) glass of milk and it makes for a pretty good breakfast.

    Overcooked pasta worked, Kraft Mac with the 'full butter' recipe is 400 calories a serving so that worked.

    I have discovered that if I have a glass of warm water, with a 1/4 teaspoon of salt in it, and a straw to sip as I eat and try to swallow works reasonable well.

    The missing saliva does impact taste and you have to imagine how something tastes at times, tough to do and keep from spitting out what is in your mouth. Helps to be pretty hungry or to have taken the fake MJ.

    Wishing everyone healing vibes and great tomorrows

    Peter

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