Can't eat

Options
Suez39
Suez39 Member Posts: 162 Member
in Head and Neck Cancer #1

Thank you all for replying. I appreciate all your feedback. I'm hoping that someday I will be able to eat again. This is by far the hardest battle to fight. Don't want sympathy just encouragement that things will get better. My radiologist said it can take up to 2 years for the radiation side effects to go away. I almost fell over backwards! He said I received an extremely high dose cause my tumor was large. I miss eating my pasta and also working. Thanks for reading! Hugs to you!!

Comments

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #2
    Options
    Keep trying! Don't give up!

    Keep trying! Don't give up! You will find something that satisfies your taste and cravings.  My go to was over cooked veg.. something I would never touch before, but was a good start. One baby step,at a time. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #3
    Options
    I'm With debbiel0

    Stick with it you will have some difficulty for a while but it will come. I remember thinking to myself a number of times-what if I can never eat again and have to stay on the tube but afterwhile things got healed up and the swelling went down and you can get down some liquids like your feeding tube mix, or ensure, and things like applesauce and pudding and you go on from there. It was months for me and some others are longer or shorter just depends on each individual case. Slow process but hang in there it comes-God Bless

  • OKCnative
    OKCnative Member Posts: 326 Member
    #4
    Options
    I wish more doctors would

    I wish more doctors would caution patients about feeding tubes and the potential for long or even lifelong issues.

    It was a member on this forum that convinced me not to get a feeding tube. I was fortunate and that when i finally picked an oncologist I was happy with, she too concurred and said if I could suffer through treatment without a tube I'd be forever grateful. It was a close call. Got so bad I had an appointment with the surgeon who would instal the tube if it became medically necessary. I was only a couple of pounds from my doctor telling me I needed it to survive.

    I have two friends who choose to get feeding tubes. One is still on a tube two years post treatment, the other is using a tube part-time for 6 months now.

    Everything about this disease is a bi*ch.

  • phillyboy
    phillyboy Member Posts: 23 Member
    #5
    Options
    can't eat

    Suez39. You are fighting a hard battle. I know. 2 years post neck radiation and still no taste or saliva. Do not give up. There is always a chance, maybe even a partial. To survive you must get sufficient nutrition. Try different meals and maybe something will help. Some meals I force myself to eat washing it down with water,apple sauce,gravies etc. Once in awhile I have an appetite but it doesn't last. I had a feeding tube and had it removed last year and drank 2-3 bottles of Ensure with some cream soda added. Still doing it. With food and Ensure I stopped losing weight. Right now I am dealing with anxiety over the unknown future. Cancer and after effects can be very hard to deal with but you are still alive. Xylemelts help at night so my mouth is only dry part of the night. Wishing you the best for recovery in time.

  • Logan51
    Logan51 Member Posts: 464 Member
    #6
    Options
    Suez39

    I, like you apparently, was not given an option with the size of your tumor. Had mine put in before tx and used for some 9 weeks, kept for 1-1/2 years, and no problems whatsoever. Could not have gotten the nutrition I needed during tx without it- on Morphine the start of week #2, and too sick for Rads in #5 and 6. Sipping water and the heavenly ice cubes during treatment kept the swallowing function going. Do not understand about Dr.s not warning people about feeding tubes- the only warning to be given is you have to keep swallowing function going, and that's the general consensus for the past ten years on this forum. Nobody likes even the thought of having a G-tube, or one of the lesser ones, but they do ensure you will get the nutrition you need during tx, and however long afterwards.

    I'm now over 10 years out and the aspiration has grown worse over the past year-plus. Swallowing was never an early problem for me. But, ever since tx my morning breakfast? 3 Ensure-plus drinks. 6800 cGys, I'm a candidate for jaw replacement in the next couple years, so am careful what I do eat- soft foods, like a few others. U of Iowa says 6000 cGys is the break point for Osteoradionecrosis in jaw, according to my Dentist who did not know this until his Son got a HPV-related and made inquiries at the University's top H&N people (ranked in top 5 in America). Follow-up visit with my ENT who has degrees from Iowa and Wake Forest- yep, the jaw thing is likely inevitable. SO, good for everyone to make inquiries as to how much of the Rads they got, I reckon.

    Hang in there, and hold on to the hope of each day getting a little better, even if hardly noticeable.

  • dnelson964
    dnelson964 Member Posts: 21 Member
    #7
    Options
    more you can do...

    I am also a cancer treatment survivor and 3 yrs still cancer free from a stage 4 sinus tumor. To avoid use of a feeding tube I modified my treatment to 50% radiation followed immediately by 50% Proton. Less healthy tissue damage from radiation over shoot. I also almost lost ability to eat normally but by passed the feeding tube by using a numbing RX mouth rinse. Next I started making blender drinks for nutrition. CVS protein 8 oz. with 2 eggs, kale, scoup protein powder, blue berries, strawberries, banana pieces, 4 apricot seeds. I do this 1 or 2 x's per day. I never stopped eating and swollowing as I knew it would only get harder to eat again if I stopped. You can get down apricots, asparagus, small cut up chicken pieces, apple sauce, etc. also. I also have some radiation necrosis so just finished 60 Hyperbarics treatments. Keep being inventive and never give up so you can live a better life. I also had lost hearing in my left ear but that has just now returned to almost normal. Dr's thought I would never get that back.

Discussion Boards