Questions

SuzJ
SuzJ Member Posts: 427 Member

Had my appt with Chemo Dr today, where she told me I'm not getting enough nutrition, AND, my kidneys couldn't handle another round of Chemo.

I'm sorry but I am head over heels elated that I don't get to be poisoned a 3rd time, its been brutal, One week of speeded up feeling like crap, One week of total crap, and One week of getting back to the new normal, before the next go round. I am so glad it's over. Chemo was only to increase the effects of radiation anyways.

 

So back to the Nutrition part, my thing is, I have never been a big eater, and you know how they say, youre stomach is about the size of your fist, or a small orange? Well, since this started, I'd say mine is more like the size of a grape - a small grape at that.

How are peoples, or loved ones appetites? I'm not talking foodwise, cos we all know we dont have one, I mean, in terms of fullness, that feeling you get when your eyes are bigger than your belly, but you really want to eat it...

Isn't it the same with a feeding tube? don't you fill up just as fast? Or does it bypass that part? I know I should have asked all this at my GI consult, but I didn't want it, still dont want it ! I am so close to the end...If I don't have to endure another surgery...

Anyways, thoughts?

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Comments

  • MMDowns
    MMDowns Member Posts: 318
    I make my husband an Ensure

    I make my husband an Ensure "shake". I get the Enlive Ensure vanilla, mix ina packet of carnation instant breakfast mix and add 2/3rd cup whole milk. That's well over600 calories per drink.  If he has 2 of those plus 2 regular Ensure's he's good to go. Sometimes he doesn't get all of it in but on a good day he's near 2,000 calories and thats good for him. hope this helps! You're so close to the finish line!!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    this tastes funny bad

    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

  • SuzJ
    SuzJ Member Posts: 427 Member
    But..

    Did you get the same "full" feeling?

  • mskitty137
    mskitty137 Member Posts: 73
    Hi SuzJ, my hubby is 2 weeks

    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

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #6

    Hi SuzJ, my hubby is 2 weeks

    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

    MsKitty,

    MsKitty,

     My husband's throat isn't too sore but we are at the point where the mucous is so thick that even swallowing water is a chore.  I just asked him yesterday if he's swallowing, as in "normal" swallowing and he said No.  The thick saliva is too much and that when he tries to swallow it chokes him.  So that is where we are.  I told him he HAD to try and swallow more water.  He can do a bit of oatmeal in the a.m. but by the evening the mucous is so thick that he gags.  He threw up last night due to choking and gagging.  This "new normal" can take a leap off of a high mountain.  

    *Side note-  he got the job at the school he interviewed at two weeks ago.  Here's the sucker punch- they offered him 14,000 less than what me makes now.  Which blows my mind.  Where he teaches now is a small, catholic, private school, on the poorer end and what they pay is on the lower end for his experience and degrees. This new school is a wealthy, private school that is in no danger of closing.  He now has to try and negotiate a higher pay or he has to turn the job down.  When does it end...  I'm so tired of all of it.  

     

    Hope your hubby's doing better every day!

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    At four months post, for me,

    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.

  • mapdan
    mapdan Member Posts: 33 Member
    edited April 2017 #8
    6 months out for me

    Yes you said it best, food is mechanical. You take it like medicine to keep going is all. I live on soups and added ingredients to get calorie count up. No taste and no smell so hard to enjoy anything in mouth. Texture is the only thing I go by. Dry mouth is bad so water and anything wet is always at my side. Yes we are still here and my PET scan came back clean but quality of life has diminished with the after effects of radiation on my throat. I hope it gets better after a few more months as I read that it can take a year to get some taste and saliva back (Hoping and praying) that happens. So sorry for my little venting but this group has been there for many folks and has always had great advice and encouragement.

  • SuzJ
    SuzJ Member Posts: 427 Member
    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

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited April 2017 #10
    I have a couple of things

    I have a couple of things that annoy me, day to day.  Chemo wiped out my digestive bacteria, which gives rise to my tongue Candida infestation, which makes my dry mouth worse.  Medical science seems to be a bit negligent in arriving at a solution for what doesn't seem to be that complex a problem.

     Chemo also seems to probably be behind my  itchy dry skin problem, which shows up spontaneously at random locations a bit after I climb in bed at night. I get low volume skin rashes on my arms, nothing serious, they get treated and heal in a day, but always come back, in a new location.  

    My neck lymphodemia has now come and gone four times, and is back.

     But the worst is my runny nose.  Probably caused by radiation to my still healing tissue in my throat, it is the idiot cousin of my old muscosites.  It is low volume, completely random in occurrence,  but just enough for me to dribble snot periodically throughout the day.

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #11
    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

    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
    SuzJ Member Posts: 427 Member
    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

     

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited April 2017 #13
    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

     

    Megestrol

    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.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    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

     

    Thaaat's a pretty good menu.

    Thaaat's a pretty good menu.  Much better than I did at that point.  

  • tcbbmom
    tcbbmom Member Posts: 1
    edited April 2017 #15
    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.. 

  • mapdan
    mapdan Member Posts: 33 Member
    edited April 2017 #16
    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.. 

    Heres what I tried

    I know just what you are going through. I am 6 months from last radiation and still have dry mouth but am eating some items. I had my tube taken out at about month 5 after treatment. Just willed myself to not use it and get enough calories. I do drink at least one or two boost or Ensure everyday (with milk) I mix milk with it to thin it out. My diet is mainly forms of soup. I cant taste or smell yet but your mind still rememebrs what you didn't like before. Funny how that works. I take soups and add ingredients to get the calories way up. I take in about 2200- 2500 calories a day and cant gain weight. Went from 195 to 150 and stay at that 150 range. I take multi vitamins also. I am surviving on this but as you get depressed about not being able to eat and enjoy it. At your stage I will say it gets better but slowly. And you will get through this. Alot of us have. Not pleasant but are survivors in a very unique club. Good luck and stay positive. Thats a key thing to this. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited April 2017 #17
    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.. 

    welcome

    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.

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #18
    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

     

    OOOO girl, that is awesome!!

    OOOO girl, that is awesome!! The fact that you can still eat those foods in this stage of the game.  Nice!  My husband definitely had that overfull feeling.  The tummy shrinks and what you could normally eat has gone down.  He can do 4 ensure's and a big shake and that's it and it has to spaced out or he's super uncomfortable.  Yay for you!!!

  • rsp
    rsp Member Posts: 103 Member
    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.. 

    Same boat here

    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!

  • sherylcv13
    sherylcv13 Member Posts: 23
    edited April 2017 #20
    rsp said:

    Same boat here

    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!

    Thanks for the pointers

    My husband still uses the PEG exclusively (3 months post-surgery) and I'm always looking for ways to add calories without adding more volume.  Thanks for the pointers :) 

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited April 2017 #21
    I was pretty out of it during

    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.