Questions

SuzJ,

For 8 months post it wasn’t that my eyes were bigger, I simply had such an aversion to feel, texture, taste no taste that I did not have much interest in food.  BUT like a good H&N member I consumed the recommended calories (mostly by smoothies) and continued to try all foods all the time.

I recovered and now pig out at times and truly do enjoy certain foods (taste and feel).

Matt

Hi SuzJ, my hubby is 2 weeks post treatment and this is our problem. He absolutely refuses to drink the Boost or Ensure. His throat is still quite sore but he is back to being able to eat soft bland foods. However he gets full very quickly. Especially since he has to drink so much water to counteract the lack of saliva.  I really don't have the magic answer, just wanted you to know that at least for my hubby his is his current new normal. 

Maybe instead of trying to drink a full shake at once, try sipping on it every 10 minutes. Can't hurt to try.

I'll keep you in my thoughts. 

Susan

At four months post, for me, food consumption is mechanical - I do it because I know I need to.  Half of one shelf of the fridge is various salsas and sauces to try to make it interesting.  I'm not necessarily complaining, I fought a ten pound weight gain/loss battle for decades, and I am now so below my old target weight it makes the issue moot, for now.  

I do experience appitite, but it doesn't translate into motivation.  Dry mouth is also a factor.  Some foods like breads are tough, and that has implications for hamburgers and sandwiches.  But, I am alive, I am healthy and becoming more so, my misc. side effects are sorting themselves out, so we'll just work thru - doesn't seem to be any miracle cure on the horizon anyway.

SuzJ said:

smell

I have smell, maybe stronger than ever ~ which is why ensure is so hard! I can smell it before it gets to my mouth and .. i just cant... I have to find calories elsewhere, but Ensure? No, its not happening

Our dietician gave us a list of other drinks becuase she wasn't a huge fan of ensure or boost.  I know one is called Bolthouse Farms- they have meal replacement drinks in different flavors.  They also have more calories and protein.

SuzJ said:

think I did ok today

didnt count, but I feel stuffed..

Liquid yoghurt for breakfast, bottle of water

a taste of ensure, yukkkkkkkk you can seriously smell it before you taste it.

2 egg omelette, (ate half ish) with cheese

Ensure, - long straw, bypassed  taste buds, did it quick, like medicine

Baked potato, with butter, sour cream, cheese, lots of water..

 

I am so overful its not funny

I would have had mushroom soup, but who knew you can burn it so easy lol

 

G.I. gave my husband megestrol to enhance appetite. Jim was never a big eater, either, and things did not start to taste bad during and after treatment, he just had no appetite and always felt full.

Megestrol worked well for Jim.

I was diagnosted with squamous cell on the back bottom of my tongue back in sept 2016. my last chemo was dec 27 and my 38 radiation treatments were completed on jan 4, 2017. As of today, I am still not able to eat regular food.  I try different things, but my mouth is so dry, and alot of food hurts my throat when i swallow. I thought by now I would be able to eat anything. I still have my feeding tube that I use sometimes because the boost drinks upset my stomach, so I'm  afraid that I'm not getting the nutrition I need.  does anyone have any suggestions? and am I close to being able to be normal again. this has also caused me to be very depressed. they wont take my tube out until  I gain 12 pounds and I am not gaining of course. I went from 142 to 118. I'm very down about how thin I am. I look like i have aged 10 years.  very depressed.  thank you for reading and any advice you can give me.. 

tcbbmom said:

not able to really eat yet

I was diagnosted with squamous cell on the back bottom of my tongue back in sept 2016. my last chemo was dec 27 and my 38 radiation treatments were completed on jan 4, 2017. As of today, I am still not able to eat regular food.  I try different things, but my mouth is so dry, and alot of food hurts my throat when i swallow. I thought by now I would be able to eat anything. I still have my feeding tube that I use sometimes because the boost drinks upset my stomach, so I'm  afraid that I'm not getting the nutrition I need.  does anyone have any suggestions? and am I close to being able to be normal again. this has also caused me to be very depressed. they wont take my tube out until  I gain 12 pounds and I am not gaining of course. I went from 142 to 118. I'm very down about how thin I am. I look like i have aged 10 years.  very depressed.  thank you for reading and any advice you can give me.. 

tcbbmom,

Welcome to the H&N forum, sorry about your post treatment blues.

Your food and eating condition is way more typical than you may believe.  Many H&N members struggle to get back to the land of normal (or new normal as we say).  If you must gain weight, you need more calories, if you need more calories; you need to doctor up what you consume with anything high in calories (oil, nuts, etc.).  There are also some very high calorie drinks which I cannot remember their names.  I know it hurts, but you need to experiment a little at a time an different things until you strike calorie gold.  If you can slip into your tube or sip through your mouth some weight gaining calories you will put this depression behind you and become more abi-normal like all of us.  Set small goals, try a buffet, and don’t give up.  If the depression won’t let up, consult your doctor for some help, this is generally short term and can make a world of difference.

I was on smoothies for 8 months, but tried everything.  I had dinner with my parents every Sunday and would have (maybe) one bite of chicken, 1 spoon of mashed potatoes and a few peas, but the point is I tried.   I also discovered that sweet tea tasted good and saw that as a victory.

We may offer advice on here, but you must give it the old H&N try and jump into the recovery mode.  It does get much better.

Matt

You may want to start a new thread and introduce yourself, if you want more response.

tcbbmom said:

not able to really eat yet

I was diagnosted with squamous cell on the back bottom of my tongue back in sept 2016. my last chemo was dec 27 and my 38 radiation treatments were completed on jan 4, 2017. As of today, I am still not able to eat regular food.  I try different things, but my mouth is so dry, and alot of food hurts my throat when i swallow. I thought by now I would be able to eat anything. I still have my feeding tube that I use sometimes because the boost drinks upset my stomach, so I'm  afraid that I'm not getting the nutrition I need.  does anyone have any suggestions? and am I close to being able to be normal again. this has also caused me to be very depressed. they wont take my tube out until  I gain 12 pounds and I am not gaining of course. I went from 142 to 118. I'm very down about how thin I am. I look like i have aged 10 years.  very depressed.  thank you for reading and any advice you can give me.. 

Hello,

Your story sounds just like my husband!  He had SCC on the base of his tongue and finished his 38 radiation and 5 chemo treatments on Dec. 23.  He is still not able to eat, and he doesn't have a feeding tube!  He lost 82 pounds! He also gets an upset stomach from Boost, and the dr. prescribed Zofran three times a day.  That has seemed to help.

We were so concerned that he still isn't able to eat, as it seems as though most of the people on here are eating at this point in their recovery.  The dr. said my husband has "consequential tissue injury" which is causing his healing to be delayed.  He prescribed him a pill called TRENTAL to help his throat heal.  

The nutritionist also suggested drinking two packs of JUVEN a day to help wound healing.  You can buy it at Giant.  It mixes with 1 cup of water.  It is very expensive ($25 for 8 packets!) We found it on Ebay much cheaper.  My husband got orange flavor, and he seems to be able to drink it twice a day.  

He has been taking the Trental and drinking the JUVEN for about two weeks now, and he seems to think they have helped.  He actually ate a bowl of Lobster Bisque today!  This was the first "non milkshake" food he has tried!  So, I call it a step in the right direction.

There is also something you can buy on Amazon (or Wallgreens web site) called BENECALORIE.  It comes in a case of 24.  You add it to any food and it gives you an additional 330 calories. It does not have any taste. That has helped my husband tremendously as he can only drink liquids.  

There is also a HIGH CALORIE BOOST that is 530 calories.  You can also get it on Amazon.  

I make my husband a milkshake using the High Calorie Boost (530 calories), Benecalorie (330), Two scoops of ice cream (280), and 1/2 cup of Fairlife milk(70)... that is about a 1,200 calorie shake!  He drinks it very slow, and can take up to an hour or more to get it down.

I hope some of this information helps you.  Both you and my husband are on the same schedule as far as when you finished treatment (within a week or 2) and how you are healing.

I'd be glad to answer any other questions you may have if I can.  My husband doesn't get on this site, but I get on just about every day.  IT has helped me tremendously!

Where did you have your treatments?  My husband is being seen at Johns Hopkins in Baltimore. )He goes for another appointment tomorrow.)

Did you have your PET scan yet?  My husband did not.  The dr. said his PET would light up like a Christmas tree right now since his throat is still healing.

Best of luck to you, and know you are not alone in this journey!

I was pretty out of it during treatment and ignored advice on using various vegetable oils to suppliment.  Now 4 months post I am using coconut and seseme oil to fight Thrush/Candida and learning that a very small quantity has loads of calories.  A single tablespoon of seseme oil has 130 calories, and will be a whole lot better than the equivalent corn syrup calories.