Stage 4 tonsil and lymphnode cancer advice

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Metfanpt
Metfanpt Member Posts: 3
in Head and Neck Cancer #1

Hi

My name is Mike and I have been diagnosed with stage 4 tonsil cancer and Am on the 6th radiation treatment out of 35 treatments . I guess I knew that it would be terrible but the change it taste of food and the feeling of sand in my mouth are awfull .  I was wondering if anyone had advice on a beverage of a soft food that may be a little more palitable . By the way the removed all my teeth b4 the started my therapy . Thanks

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  • Barbaraek
    Barbaraek Member Posts: 626
    #2
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    Metfanpt

    My husband said everything tasted like wet cardboard and it stayed that way for quite a while. I'm sorry you have to experience this. One thing he found helpful was to mix some aloe juice (juice, not gel - it comes in a strawberry-kiwi flavor) about 2-3 tablespoons with 8 oz. of water. He said it made the water feel "slipperier". Maybe that will help that gritty sand feeling.

    If you get mouth sores try L-Glutamine powder mixed with water to either swish and swallow, or you can spit out too. There is also a product called GelClair that might help.

    as far as eating goes...my husband had a PEG tube by week 2, but you could try smoothies, eggs, creamed soups.

    I'll be cheering you on as you check off those radiation treatments!

    Barbara

  • MrsBD
    MrsBD Member Posts: 615 Member
    #3
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    Food advice

    Welcome to the group. You've found a good source of advice. Barbara's is a great start. Your mouth will be irritated for several months, but keep eating and drinking as well as you can in order to get the nutrition and hydration to recover. Some of the foods I ate were canned fruit, pasta, canned vegetables, soup and Ensure. It's a long haul, but we will be here with support and prayers!

  • Flyfisherman
    Flyfisherman Member Posts: 23
    #4
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    Advice

    Hi Mike.  Nice to meet you.  Sorry it's through this forum.  I'm a stage 4 CSS survivor.  Base of the tounge.  I went through a partial neck disection surgery last April, where they removed the tumor from my tounge along with my tonsils and lymph nodes.  I had 30 rounds of radiation and 6 weeks of chemo.  I was fortunate in that I never have lost my taste.  However, the radiation dried up my salivation making it difficult to eat.  My doctors told me that they don't care what I eat, just as long as I eat!  Even so, I've lost more than 100 lbs (I could afford to do it, but can't lose much more!).

    I've found that High Protein Boost is easy for me.  At my worst, I was only taking in 2-3 per day and it was a slow difficult process.  I still do a minimum of one a day.  During the hard time, I ate a lot of cantelope, honey dew and watermelon.  They were moist and went down easily.  Now,  I've found that I like a lot of soups, especially the creamy type.  Thin, broth types are difficult for me to swallow due to changes in my swallowing brought on by the surgery and radiation.  I do a lot more fish now and try to eat moist things like mashed potatoes and gravies.  Tons of vegetables too.

    The thing to remember is, you will feel better.  Like my DR said, one morning, you'll wake up and it will be like you've turned the corner.  He was right.  Don't rush it or get frustrated.  It won't happen quickly and it may never return to what you have been accustom to.  The good thing is, you are here!

    This forum is a wonderful place to come for support.  It has helped me.  Good luck in your recovery.  I wish you well!

  • Metfanpt
    Metfanpt Member Posts: 3
    #5
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    Thanks

    Thanks for reaching out with advice and well wishes it is very appreciated

     

     

     

  • Raddude
    Raddude Member Posts: 84
    #6
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    Hi Mike

    Of all the parts of radiation/chemo that was my most difficult. I tried so many things and ended up with oatmeal and eggs as my main diet. Gingerale also was helpful.

  • wmc
    wmc Member Posts: 1,804
    edited May 2016 #7
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    Welcome to H&N group

    Welcome to H&N Group, and also sorry you need to be here. The others will help with taste and food as I never had chemo or radiation as I had only surgery. SCC Supraglottic T3;N0;M0, just above my vocal cords and removed my Larynx and a neck dissection on both sides which took 48 lymph glands on the left side and 38 on the right side and now breathe through my neck.

    Yes, it is a rough road to go down and can and will affect everyone just a little different. It is said that Head & Neck cancer treatment is the 2nd worst a person can go through, I do agree with that. I will recommend reading the post at the top called [Link for it >>] SuperThread (Read Only) as it is full of some great information and is from the ones that went through this already. At first, taste, swallowing, saliva, and even smell can be affected. One of the best advice I can give I learned from CivalMatt and I will say it is some of the best. Drink lots of water and keep swallowing and stay hydrated. You can forget how to swallow even. I will say that everyone here will share what they know as the patient and caregiver as well. I believe you will get the most support and advice here than you can find anywhere as everyone will be in your corner for support. You are not alone with this. I will add you to my prayer list, and remember we are open 24/7.

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited May 2016 #8
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    welcome

     

    Mike,

     

    Welcome to the H&N forum and one of the great weight loss programs you never hear about.

     

    As for food, try everything soft you can think of.  I always had to use protein drinks to keep getting calories and keep on swallowing.

     

    Remember, keep drinking water and swallowing!  4+ years post I still drink a lot of water every day.

     

    Stay focused and just get through it, one day at a time and keep your team in the loop on all changes, they will have great advice.

     

    Happy Trails to you,

     

    Matt

     

  • kdot2003
    kdot2003 Member Posts: 143
    #9
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    Hi Mike, 

    Hi Mike, 

    Sorry to hear about your diagnosis and treatment.  I had a similar treatment.  The third week I gave up eating and used the tube.  Too nauseated to eat anything that tasted like cardboard or metal.  The first two weeks I ate eggs and soups.  I had a tonsillectomy prior to treatment, you probably did too.  The radiation aggrevated my already sore throat.  I gargled and swished Hydrogen Peroxide, salt, and L-Glutamine about every 2 hours while awake.  It felt good.  Best wishes, you are going to get through this!!!! Oh and by the end of treatment I could barely open my mouth.  It was too stiff.  Try and stretch your mouth open and your tongue too. 

    Karen

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #10
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    Boost Very High Calorie -

    Boost Very High Calorie - about 500 calories per 8 ounces. It's available on Amazon if not locally.

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