having trouble gaining weight

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noodles57
noodles57 Member Posts: 2
in Head and Neck Cancer #1
Finished treatment for a tumor at the base of my tongue on August 4th 2011. Starting eating around Christmas time. Used a peg tube durning treatment. STill have it in,however dont currently use it. I hate to eat and am having a hard time gaining weight. Lost 50 pounds. Dont like the texture of food or taste in my mouth. use protein shakes and eat what I can. Help is this normal

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  • hawk711
    hawk711 Member Posts: 566
    #2
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    Hope this helps....
    I am 2 years post treatment and had a peg tube for 13 months. I used the PEG alot to get as many calories as I could get. I lost 20 lbs.....
    As far as eating, I don't like food either,but it tastes better now than it did 3 months ago. I'll shoot straight with you, it took me over 1.5 years to eat right and enjoy some foods. Only since Jan 2012 has food taken on a new life with me. My saliva has picked up some in the past 3-6 months and it helps.
    If I were you, I'd keep the PEG and maybe use it to supplant the limited food intake you are getting. with that being said, eat all the time. Even a little, I do yogurt, cereal, bananas, as snacks. I also use protein shakes to support the calories. I have gained about 8-9 lbs in the past 6 months. I never gained any weight for 1.5 years after treatment so as far as the new normal goes for you....it matches my normal. Probably we all have different levels of improvement, but you seem to be in the same boat I was in at your time after treatment.
    hope this helps,
    Steve
  • ratface
    ratface Member Posts: 1,337 Member
    #3
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    hawk711 said:

    Hope this helps....
    I am 2 years post treatment and had a peg tube for 13 months. I used the PEG alot to get as many calories as I could get. I lost 20 lbs.....
    As far as eating, I don't like food either,but it tastes better now than it did 3 months ago. I'll shoot straight with you, it took me over 1.5 years to eat right and enjoy some foods. Only since Jan 2012 has food taken on a new life with me. My saliva has picked up some in the past 3-6 months and it helps.
    If I were you, I'd keep the PEG and maybe use it to supplant the limited food intake you are getting. with that being said, eat all the time. Even a little, I do yogurt, cereal, bananas, as snacks. I also use protein shakes to support the calories. I have gained about 8-9 lbs in the past 6 months. I never gained any weight for 1.5 years after treatment so as far as the new normal goes for you....it matches my normal. Probably we all have different levels of improvement, but you seem to be in the same boat I was in at your time after treatment.
    hope this helps,
    Steve

    Where are you now?
    I think Steve is very typical in the recovery experience and I parallelled much of that. I also lost 50 lbs. Problem was I started at an obese 238lbs on my 5-6" frame. I've always been on the big side. I'm at 180lbs today and feel much better than I did when diagnosed. If you started at 100lbs then you are near death at the moment? Nutrition is a big deal in Cancer treatment, especially in our type of disease. ACS stats say 1/3 of us starve to death. If that's even remotely true, then you have to take your current situation serious. If you however were a fat arse like myself, then you can worry a little less. Food just won't taste right after treatment. Saliva is diminished and your taste buds were destroyed and growing back. They don't all grow back at the same rate which creates some interesting taste sensations on the way back. There is medication interfering with everything, depression, poor sleep patterns, just turmoil in general. I had the feeding tube in for nine months. I wasn't really using it at that point but rather just keeping it in reserve in case it became apparent this disease was coming back. I drank at leat 3 cans of cardboard nutrition concoctions per day just to get to minimum calories trying different foods in addition. obviously soups work great but I personally found salads to be easy because of their water content. Easy to chew and swallow for me. I think Steve is right on, it would be just around 1 1/2 years before I felt comfortable eating most things and most things tasted fairly normal. If your weight is at a safe level then don't really worry to much about gaining it back quickly as it will happen slowly.
  • jtl
    jtl Member Posts: 456
    #4
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    ratface said:

    Where are you now?
    I think Steve is very typical in the recovery experience and I parallelled much of that. I also lost 50 lbs. Problem was I started at an obese 238lbs on my 5-6" frame. I've always been on the big side. I'm at 180lbs today and feel much better than I did when diagnosed. If you started at 100lbs then you are near death at the moment? Nutrition is a big deal in Cancer treatment, especially in our type of disease. ACS stats say 1/3 of us starve to death. If that's even remotely true, then you have to take your current situation serious. If you however were a fat arse like myself, then you can worry a little less. Food just won't taste right after treatment. Saliva is diminished and your taste buds were destroyed and growing back. They don't all grow back at the same rate which creates some interesting taste sensations on the way back. There is medication interfering with everything, depression, poor sleep patterns, just turmoil in general. I had the feeding tube in for nine months. I wasn't really using it at that point but rather just keeping it in reserve in case it became apparent this disease was coming back. I drank at leat 3 cans of cardboard nutrition concoctions per day just to get to minimum calories trying different foods in addition. obviously soups work great but I personally found salads to be easy because of their water content. Easy to chew and swallow for me. I think Steve is right on, it would be just around 1 1/2 years before I felt comfortable eating most things and most things tasted fairly normal. If your weight is at a safe level then don't really worry to much about gaining it back quickly as it will happen slowly.

    Seriously? 33% of scchn die
    Seriously? 33% of scchn die from starvation? You may be correct but that is a new one for me.
  • ratface
    ratface Member Posts: 1,337 Member
    #5
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    jtl said:

    Seriously? 33% of scchn die
    Seriously? 33% of scchn die from starvation? You may be correct but that is a new one for me.

    I should have been more explicit jtl
    Came across the statistic in some cancer periodical. 33% of all cancer patients combined die from malnutrition. I think a lot of that is probably intentional at some point but a lot of it is the weakened state of treatment and the difficulty of getting enough calories. We may actually fair pretty well here as they closely monitor us because it's cancer of the delivery system. You can cut the number anyway you want , if it's 20%, it's still frightening.

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