How do you get yourself to eat with no taste?
Comments
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It does get better...it just takes time...hawk711 said:Roger, here's more info....
Hi Roger
You're post sounds like you are living my life 19 months later !!
No hunger, food looks disgusting, no appetite, etc, etc. I relied on shakes and protein drinks....Try to order some Carnation instant breakfast on line at walgreen. It is 560 calories and I mix it with Starbucks Frappaccino drinks from supermarket, 200 calories and it is really good. Goes down easy and is a cool 760 calories.
Then I order Scandi shakes on line at OTC.com. Mix the powder with 8 oz of milk and you get another 600 calories that tastes pretty good, vanilla, choc and strawberry. All are ok to drink. The reason for two types is one is in cans and the other is a packet. Easy to take with you anywhere. I worked and traveled and took the Scandi shakes with me and would drink 2-3 a day to get as many calories as I needed. I still count calories in my head all day and I can now eat just about everything I want.
I still have little appetite but I understand that my job now is to stay healthy and get my calories with protein and other nutrients.
I had the PEG for 13 months and it was a life saver, just not easy to use at lunch when working or when traveling, so the shakes and drinks are a great option.....
Good luck with the journey Roger, it does get better. You just have to keep your head up and be positive and keep marching forward......You can do it and you will do it....
All the best to you,,,
Steve
I'm a little over 6 months out from 35 rads & 8 bio-therapy sessions (erbitux). Taste has been coming back gradually. I do recall that exactly at the 2 month mark after treatment I ate my first bite of food again, as I was able to taste it somewhat (now I can't remember what it was, but it was salty, not sweet).
Still am having problems with tasting sweet things, but not too long ago I had tried a bit of ice cream cake at a child's birthday party, and it was so weird being able to feel the cold, creamy texture, taste some of the chocolate, but not a bit of sugar. Wasn't very appetizing. However, today my daughter offered me a bite of her vanilla ice cream, and lo and behold I could taste it pretty well! Was pretty stoked about that and ate a helping.
So, I said all that to say this...it does get better. It's just a gradual process. Considering the taste buds were assaulted with heat, as well as the salivary glands (saliva apparently having a huge part in providing taste when mixed w/taste buds), it is going to take some time for all that stuff that got bombarded with radiation to heal completely. The end of my tongue is still kinda numb.
Also, foods that anyone else would never think of as spicy, still can bring tears to my eyes from the spicy burn when eaten (I'm talking spaghetti sauce, pizza, mild salsa...things I never even considered 'spicy' in times past.) I still can't eat the slightest spicy foods yet. One can dream (:
Hang in there...better days ahead!0 -
RogerRogerRN43 said:My supplements
TwoCalHN (made by Ensure) or Resource2.0 (less thick and more drinkable).
Both about 470-480cal/serving.
My dietician calculated 1800cal/d... so I need to get in 4 servings/d.
How do they taste, since you can still taste? I have lost 7 lbs in 3 weeks and about 12 lbs over all basically living on Ensure, but now I am trying to get some other things in the mix. Just had a bowl of clam chowder and I could kind of taste it but barely. I am at 160 so I don't want to lose much more weight, I am now at 23.6 BMI. The good news is when I improve I can pig out for a while.0 -
Supplement tastejtl said:Roger
How do they taste, since you can still taste? I have lost 7 lbs in 3 weeks and about 12 lbs over all basically living on Ensure, but now I am trying to get some other things in the mix. Just had a bowl of clam chowder and I could kind of taste it but barely. I am at 160 so I don't want to lose much more weight, I am now at 23.6 BMI. The good news is when I improve I can pig out for a while.
The Resource2.0 resembles Ensure to me in consistency and goes down easier because it is in a drink box with a straw.
My taste is almost gone but I can somewhat tell it's vanilla.
I have been turned off by the TwoCalHN, it is thicker, same vanilla, and I might try watering it down, then using a straw from a cup.
Lately, I've been tube feeding the TwoCalHN.0 -
I think I'm with you on this HalHal61 said:I just used the peg, a lot
Hi Roger, I never had mouth sores, and could always swallow, sometimes painfully of course. I had my peg put in before I ever started treatment; that was everybody's advice. I didn't try and homemade concoctions. I had the long tube, that is, an extended tube that goes deep into the stomach. If you get a clog on the inside, it can be a problem, and call for an emergency room visit. I think if you puree it, and thin it, it minimum risk for long tubes, but I didn't do it.
I just got used to the idea of plugging in and doing cans. I'd try somehting to eat at different stages and the whole activity was noxious to me. The texture of the tasteless food was unpleasant. I made sure I kept swallowing with water and juice, lots every day. Eggs were the first things I could eat that didn't revolt me, and that was after several months of pure can. I wasn't working, so it was no problem for me.
I've had a big change again in the last couple of months. I'm approaching two years out. I had regained some taste, but lately, my bud acuuity has made big gains. I'm enjoying eating again, but when I couldn't, I just didn't. That's what the tube was for.
best, Hal
I too have the long thin tube that goes deep in my stomach. My infected tube change was painful, I don't want to go through that again should I get it clogged. I'll mainly use the stomach tube to get my base nutrition in, anything else by mouth will be bonus or for swallowing practice.
I pray my taste comes back sooner than later, or my mindset changes as I get used to no taste, because without taste at the moment, I really have no appetite.
I guess I'm one those that is thankful I had the tube put in before treatment.0 -
BelAir... ~Welcomebelair212 said:It does get better...it just takes time...
I'm a little over 6 months out from 35 rads & 8 bio-therapy sessions (erbitux). Taste has been coming back gradually. I do recall that exactly at the 2 month mark after treatment I ate my first bite of food again, as I was able to taste it somewhat (now I can't remember what it was, but it was salty, not sweet).
Still am having problems with tasting sweet things, but not too long ago I had tried a bit of ice cream cake at a child's birthday party, and it was so weird being able to feel the cold, creamy texture, taste some of the chocolate, but not a bit of sugar. Wasn't very appetizing. However, today my daughter offered me a bite of her vanilla ice cream, and lo and behold I could taste it pretty well! Was pretty stoked about that and ate a helping.
So, I said all that to say this...it does get better. It's just a gradual process. Considering the taste buds were assaulted with heat, as well as the salivary glands (saliva apparently having a huge part in providing taste when mixed w/taste buds), it is going to take some time for all that stuff that got bombarded with radiation to heal completely. The end of my tongue is still kinda numb.
Also, foods that anyone else would never think of as spicy, still can bring tears to my eyes from the spicy burn when eaten (I'm talking spaghetti sauce, pizza, mild salsa...things I never even considered 'spicy' in times past.) I still can't eat the slightest spicy foods yet. One can dream (:
Hang in there...better days ahead!
About time you got in here, LOL....
Welcome, great people here and tons of experience.
Like you (although I'm over 2 1/2 years post treatment now). Sweet was the one flavor that messed with me for a very long time...
I could taste somethings, Ice Cream wasn't one. Like you it was cold and textured, but after the first bite or so, I'd lose he flavor.
It's just come back recently and now I pretty much have 100% of my taste back. As for saliva, I only dry out during sleep at night.
Dawn (Sweetblood) has put together a very informative compilation of links and information. Even though you are post treatment, you might still find value in it..recipes, the many after effects (some temporary) after rads, etc...
SuperThread
Best,
John0 -
Hi RogerRogerRN43 said:I think I'm with you on this Hal
I too have the long thin tube that goes deep in my stomach. My infected tube change was painful, I don't want to go through that again should I get it clogged. I'll mainly use the stomach tube to get my base nutrition in, anything else by mouth will be bonus or for swallowing practice.
I pray my taste comes back sooner than later, or my mindset changes as I get used to no taste, because without taste at the moment, I really have no appetite.
I guess I'm one those that is thankful I had the tube put in before treatment.
I like the picture of you and the kids look likes you have a great family there my friend. I have two girls and one boy they are all in there 30th except the boy just made 26, they are all still babies to me when I look at them. So many good memories of when they were little
Blessing to all of them
Hondo0 -
Ya do whatchya gotta do...
When my taste was gone, I ust chewed up (about 200 chews per frickin' mouthful), concentrated and choked down whatever it was. It was the swallowing muscles shutting down that was a pain. I had to focus in order to swallow. I had a constant taste of burned, dead flesh in my mouth that very little could do to make it go away.
At the end and for a few weeks after it hurt to swallow and it hurt to not swallow. I don't know. Call me a masochist or a glutten for punishment or just a stupid tough guy -But I never bothered with the PEG. It hurt, but I could choke down soft stuff. It hurt when I didn't swallow. I was on constant pain meds and the bad taste was constant. I would often puke at night which only made it worse. Nothing else to do but keep going and keep forcing nutrition on down. I only lost 12 pounds through the whole ordeal.
Ya do whatchya gotta do and in the end, I made it through my treatments and into remission. Today I can eat and drink most anything except the most heavily carbonated drinks like champagne (so what. At least I can drink beer... I mean THANK GOD I can drink beer!) And while my sense of taste is a little different, I've learned to adapt.
Ya do whatchya gotta do.0 -
PictureHondo said:Hi Roger
I like the picture of you and the kids look likes you have a great family there my friend. I have two girls and one boy they are all in there 30th except the boy just made 26, they are all still babies to me when I look at them. So many good memories of when they were little
Blessing to all of them
Hondo
Funny, I changed my pic with the one you described but don't see it on my end. Still the pic of me and my girl when she was born.
??0 -
Another vote for cheese cakeSkiffin16 said:Cheesecake
MMMM, my absolute favorite, especially with cherry toppings....
Actually Shelley has a birthday on Decemebr 1st...she asked me to take her to the Cheesecake Factory in Tampa.
Best,
John
After I lost my taste the lone thing I could still tolerate was cheese cake until I found a brand new discovery! Philadelphia HEAVENLY CHEESE CAKE FILLING!!! No crust, no tin, just me, a spoon and the Tub @ 500 calories per dollop.0 -
Another vote for cheese cakeSkiffin16 said:Cheesecake
MMMM, my absolute favorite, especially with cherry toppings....
Actually Shelley has a birthday on Decemebr 1st...she asked me to take her to the Cheesecake Factory in Tampa.
Best,
John
After I lost my taste the lone thing I could still tolerate was cheese cake until I found a brand new discovery! Philadelphia HEAVENLY CHEESE CAKE FILLING!!! No crust, no tin, just me, a spoon and the Tub @ 500 calories per dollop.0 -
It's there Roger. I loveRogerRN43 said:Picture
Funny, I changed my pic with the one you described but don't see it on my end. Still the pic of me and my girl when she was born.
??
It's there Roger. I love the new picture too. Sometimes you need to sign completely out of CSN and then come back in and sign in again to see your new avatar. I dunno why it does that, drives me nuts when I change the picture because it never looks like it worked.0 -
Tub o cheese cake filling.NJR said:Another vote for cheese cake
After I lost my taste the lone thing I could still tolerate was cheese cake until I found a brand new discovery! Philadelphia HEAVENLY CHEESE CAKE FILLING!!! No crust, no tin, just me, a spoon and the Tub @ 500 calories per dollop.
I am intrigued! I saw a tub o cheese cake filling whilst shopping on Friday. However, I was juggling to much stuff, Nizzy around my neck, a package of pillsbury orange sweet rolls and slice and bake cookies in the other. I thought I should walk away from the tub o cheesecake filling. So you do not have to bake it? It's just something you spoon into your pie crust of choice?
I cannot believe this sweet tooth I've got now.0 -
Pumpkin Cheesecakesweetblood22 said:Tub o cheese cake filling.
I am intrigued! I saw a tub o cheese cake filling whilst shopping on Friday. However, I was juggling to much stuff, Nizzy around my neck, a package of pillsbury orange sweet rolls and slice and bake cookies in the other. I thought I should walk away from the tub o cheesecake filling. So you do not have to bake it? It's just something you spoon into your pie crust of choice?
I cannot believe this sweet tooth I've got now.
Being the holidays and all, if you have never tried pumpkin cheesecake you're really missing a treat. It is the only time of year I eat it and usually buy it from the Cheesecake Factory. We used to have a homemade shop locally but she retired. This women made the best cheesecake known to man. It was a sad day when she closed shop.
Can't have any for Thanksgiving, but my doctor agreed to hold off my second surgery until after New Years. Mine is a slow growing one. So for Christmas we are going to eat, eat, eat. It may be the last splurge for quite some time.
Still craving pizza though.
Tommy0 -
Pumpkin Cheesecake.tommyodavey said:Pumpkin Cheesecake
Being the holidays and all, if you have never tried pumpkin cheesecake you're really missing a treat. It is the only time of year I eat it and usually buy it from the Cheesecake Factory. We used to have a homemade shop locally but she retired. This women made the best cheesecake known to man. It was a sad day when she closed shop.
Can't have any for Thanksgiving, but my doctor agreed to hold off my second surgery until after New Years. Mine is a slow growing one. So for Christmas we are going to eat, eat, eat. It may be the last splurge for quite some time.
Still craving pizza though.
Tommy
I have made a killer pumpkin cheesecake with a chocolate cookie crumb crust. The. Bomb.0 -
A godsend!sweetblood22 said:Tub o cheese cake filling.
I am intrigued! I saw a tub o cheese cake filling whilst shopping on Friday. However, I was juggling to much stuff, Nizzy around my neck, a package of pillsbury orange sweet rolls and slice and bake cookies in the other. I thought I should walk away from the tub o cheesecake filling. So you do not have to bake it? It's just something you spoon into your pie crust of choice?
I cannot believe this sweet tooth I've got now.
Yep, no baking at all and BTW, it is also wonderful with a glop of it on those Pillsbury Orange Sweet Rolls. I've had it with tart crust, gram cracker and butter crust, Oreo Cookie Crust and not a thing takes over 5 minutes except for Cheese Cake Frozen Custard. Of course if you wanted too you could bake it but I am not a fan of the NY Style browned filling. The lady doing my swallow study said I needed the most calories with the least effort I can get and that stuff fits the bill perfectly! You're going to love it.
Sweets were the last taste that I got back and I am the same as you. Can't get enough of them, but I believe it is my body's way of saying, gain weight!0 -
Taste oh Taste
Taste oh taste you are a fickle friend. My taste for anything sweet has turned to sour. I love fresh green beans, raw, not cooked. I just ate some raw and guess what they tasted like raw fresh green beans..this eating thing is going to be an adventure for sure. I find the only way I can get all my water down is if it is very cold, once it starts to get too warm, not so much, it has a funny taste, not salty or anything..just funny.0 -
NJRNJR said:A godsend!
Yep, no baking at all and BTW, it is also wonderful with a glop of it on those Pillsbury Orange Sweet Rolls. I've had it with tart crust, gram cracker and butter crust, Oreo Cookie Crust and not a thing takes over 5 minutes except for Cheese Cake Frozen Custard. Of course if you wanted too you could bake it but I am not a fan of the NY Style browned filling. The lady doing my swallow study said I needed the most calories with the least effort I can get and that stuff fits the bill perfectly! You're going to love it.
Sweets were the last taste that I got back and I am the same as you. Can't get enough of them, but I believe it is my body's way of saying, gain weight!
Sweets were ironically the first thing to come back for me. I think it's my body's way of saying , "Gain all the weight back you lost, and then become the first woman with a stricture to get to 200 pounds some day". Yep. I'm almost back to 120 lbs.0 -
It is an adventureosmotar said:Taste oh Taste
Taste oh taste you are a fickle friend. My taste for anything sweet has turned to sour. I love fresh green beans, raw, not cooked. I just ate some raw and guess what they tasted like raw fresh green beans..this eating thing is going to be an adventure for sure. I find the only way I can get all my water down is if it is very cold, once it starts to get too warm, not so much, it has a funny taste, not salty or anything..just funny.
It started getting funny to me when I finally started eating because I never knew what would taste like the old taste and what would be a totally new experience. I recall that bread pudding was the first real food I could eat and enjoy and I must have devoured 10 lbs at one sitting...:>) (well maybe not 10 lbs but a lot)0 -
RogerRogerRN43 said:Picture
Funny, I changed my pic with the one you described but don't see it on my end. Still the pic of me and my girl when she was born.
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Beautiful family my friend, you have a lot of reasons to live for as they will need you for atlease the next 60 years or so. lol
Hondo0
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