Appetite after rad treatments

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luv_freedom
luv_freedom Member Posts: 49
in Head and Neck Cancer #1

I finished my rad treatments after tumor removal at base of tongue and partial dissection of one lymph node level 1 just under right jaw. Last rad treatment was on Sept. 21st. I have a feeding tube but I can eat most anything now. I have a little bit of a hard time with any tough meats because I only have my front teeth since they removed all of my molars during surgery. My concern is that I still don't seem to have much of an appetite. I can taste almost everything normally now which is surprising to regain that so soon! But if it wasn't for the feeding tube I would be losing weight due to the small amount of food I'm eating. I still have no working saliva glands which makes it a lot more difficult to eat most things and I have to take a sip of water with pratically every bit of food I take. I don't know if I'm using the feeding tube as a crutch and just need to force myself to eat or I'm just rushing things a bit. With the surgery that was done it also seems like I have to re-train my tongue to manipulate that food to the back of my throat for swallowing and worry that I might choke. I also noticed that they cut off my uvula! WTH did they do that for? I will ask about that when I go back for a follow up the first week of December.

 

Gary

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    add oil and eat

    Gary,

    Oh no, not your uvula.  I will need to check my throat soon.

    I drink lots of water with every meal.  My taste is different, but very nice.

    I took the scenic 7 month smoothie ride back to eating semi-normal.  I was always sampling everything, all the time.

    It was a weight loss happy and interesting time.

    We are swimming in fresh eggs, so it will be a big omelet tonight with a glass of milk and water.

    Cheers,

    Matt

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #3
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    No need

    there's no need to force yourself to do anything at this stage. Just take things as they come. Your tube is an aid not a crutch. You need it to get as much liquid in you as possible. They recommended me two litres a day you can have any liquid. In the early stages of recovery give in to yourself, if your tired sleep, if it's an effort to eat much use the tube. You'll recover much quicker, don't fight it. The time will come and you'll know when your ready to lose the tube, think of it as your friend for now. 

  • MrsBD
    MrsBD Member Posts: 615 Member
    #4
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    Appetite

    Even though my sense of taste stayed the same and lack of saliva isn't a big issue, my appetite still hasn't returned to normal 13 months after treatment. Savory flavors are more attractive than sweet, which is fine with me. Keep trying different foods. As you become more active,  it may increase too.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    Not to worry....at this stage

    the tube is for feeding, and the mouth is for testing and tasting.  I think you must be doing great, I still can't do meat very well, and I'm 3 years out....I still eat a lot of soup, just because it's easier.  Veggies were really good too (cooked, of course)....Saliva comes back slowing....so slow that only really notice when you realize your water bottle isn't in your hand, and you haven't sipped from it for an hour.  Or you forget it in your car, and didn't realize it for two hours.  Smile 

    For time being, eat what you are comfortable eating....and get your calories from the tube.  My Oncologist refused to take my tube out even tho I wasn't using it....it was like he wanted me to weigh a certain amount, and THEN he'd take it out....blackmail.  So I just wore work boots to a weigh in, and he finally let me get it out.  That was at least 2 1/2 months after treatment ended.

    p

  • luv_freedom
    luv_freedom Member Posts: 49
    #6
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    phrannie51 said:

    Not to worry....at this stage

    the tube is for feeding, and the mouth is for testing and tasting.  I think you must be doing great, I still can't do meat very well, and I'm 3 years out....I still eat a lot of soup, just because it's easier.  Veggies were really good too (cooked, of course)....Saliva comes back slowing....so slow that only really notice when you realize your water bottle isn't in your hand, and you haven't sipped from it for an hour.  Or you forget it in your car, and didn't realize it for two hours.  Smile 

    For time being, eat what you are comfortable eating....and get your calories from the tube.  My Oncologist refused to take my tube out even tho I wasn't using it....it was like he wanted me to weigh a certain amount, and THEN he'd take it out....blackmail.  So I just wore work boots to a weigh in, and he finally let me get it out.  That was at least 2 1/2 months after treatment ended.

    p

    phrannie

    LOL! that is so funny the remark you made about the work boots! that's exactly what I did so the company doctor woulld see that I gained some weight and would let me go back to work.

    Thanks all for the replies! I love this site!

     

    Gary

  • wmc
    wmc Member Posts: 1,804
    #7
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    Now on to recovery, yep it is also slow...

    Glad you finished your rads and should be just about done cooking. Everything can be slow so just be patient. For your appetite it might take some time but you still have the tube. Just make sure you are getting the amount you need. Some of that might be that you are still training your toung, so you need to put food in to learn. Just keep working on it and it will get so much better.

    Bill

  • luv_freedom
    luv_freedom Member Posts: 49
    #8
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    appetite

    It seems like I started off pretty good with the appetite and the taste coming back. Then the last couple of weeks it all seemed to fade away. I taste everything but the taste is very strong compared to before. And I just don't seem to be that hungry and I know I have to eat. So I just keep falling back on the feeding tube. I can't seem to gain any weight either. Maybe the doctor can give me something to help with my appetite.

     

    Gary

  • Barbaraek
    Barbaraek Member Posts: 626
    #9
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    luv_freedom said:

    appetite

    It seems like I started off pretty good with the appetite and the taste coming back. Then the last couple of weeks it all seemed to fade away. I taste everything but the taste is very strong compared to before. And I just don't seem to be that hungry and I know I have to eat. So I just keep falling back on the feeding tube. I can't seem to gain any weight either. Maybe the doctor can give me something to help with my appetite.

     

    Gary

    Gary nothing seems to move in a straight line

    with recovery. Give it some time and I'm sure you will make some forward progress again. Recovery seems to be a complicated dance of side steps and forward and back, so when you feel discouraged think back to the early days after treatment and get some perspective on how far you have come. You really are doing well! It just seems so slow sometimes.

    There are ways to add calories to you daily intake. The nutritionist at the hospital is a big fan of adding a little olive oil to dishes, and heavy cream can be added to some prepared foods also. I recently ordered some cookbooks from SPOHNC and some other easy chew=easy swallow cookbooks from Amazon..they have some suggestions for boosting calories.

    As for feeling like the feeding tube is a crutch - I understand completely! My husband finished chemo the beginning of September but still has his tube. It's like Phrannie said - use the tube for your calories, and your mouth for experimenting with texture, taste etc. Eventually, you'll transition off the tube.

    Barbara

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