Eating Problems

2»

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    Robt54697 said:

    Eating
    Hi Hondo,
    Brand new to this and just registered. I am 30 days post radiation. Had surgery, chemo, and radiation. Tonsil and several lymph nodes removed. Just depressed but do not take any anti depressants. It has been such a struggle to eat enough. Went from 166 lbs to 148 and have always worked out and been strong and healthy so just get down sometimes. Maybe you can click on my name and see pic and story. Anyway that is all. Thanks.

    Robert

    Hi Rob
    Welcome to the family, sorry you have this stuff but glad you found the right place to be. Time heals everything so soon you will back to your new normal

    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Robt54697 said:

    thanks!!
    For your supportive reply. Actually I never had any mouth sores and my eating has gotten better. Using something called Boost Plus which is 360 cal and try and drink three a day and get the rest from solid food. It is so nice to have someone who has been there reply to me. Thank you again and hope to connect with you again and that you are doing well.

    Robert

    No mouth sores!!!
    Robert, that is amazing. My mouth was one huge mouth sore. Good for you! Glad you didn't have to deal with that.
  • Hondo
    Hondo Member Posts: 6,636 Member
    MJ70 said:

    Hondo
    Got most of all the wonderful new normals you do ..except i am retired, no dog but wish i did at times...I am seven years out and i have picked up great advice from you along the way since i joined...(stopper 4 is great)..I only eat breakfast and dinner for several reasons besides all the ones you listed ...I get postprandial hypotension after i eat...which simply means low blood pressure...which last for about an hour...90/45 or lower..makes me very weak kneed and have passed out.I am taking some new meds that should...help soon..(fluocortisone.) My favorite dinners are ramon noodles or minute rice mixed with italian minestrone soap and ever a little pasta sauce or tomato soap .. i eat it with a spoon because with my new left jaw bone made from my fibula i have no nerve in my lip so it helps me get it in my mouth and not my table... If we go out it is something close to that.. all in all we keep going..and thinking positive...I am getting my esphagus dilated tomorrow morning .. never thought that would make me excited but it does. Hope every on this board has a great week ahead... Mel

    Hi MJ
    Good luck on the dilation, I go to see my ENT next week and I too am just about ready for her to dilate me. I never had it before and I am 8 years from my first treatment and 6 from my second, so it is about time to get it done.

    Wishing you well and please let me know how you do.
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    D Lewis said:

    Why yes, Hondo, I strongly resemble these remarks...
    Hondo, you might just be writing about me. I'm sitting here trying to think if you've left anything out, and I don't think you have.

    Well, there is that issue about the one family member (mother in law) who remains at the table with you, thinking it's polite to do so... but asks over and over... "Are you done yet?" " "Done yet?" "Done now?" "Just about finished?"

    Although I must say, my relationship to the dog is closer than it has ever been before. She follows me EVERYWHERE!

    Deb

    Hi Deb
    Thanks I been down all day not feeling good and needed the laugh about the mother-in-law. I can just close my eyes and in vision that happening. I had some fish today for dinner and my little pit-bull was right there with me to get her piece of fish.

    Loving life
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    shine1113 said:

    same here...
    Hi Hondo,

    I'm a 12yr-almost-stage4 NPCA survivor and am still on the same boat as you in terms of difficulty in eating, swallowing, talking, etc. From initial diagnosis in Nov. 1998, I underwent radiation, both external (cobalt therapy) and internal (brachytherapy). The treatment affected not only my taste buds but also my parotid gland (the largest of the salivary glands)thus, saliva production is very minimal to almost nil.

    I have learned to live with this long-term (lifetime, I think!) side effect of radiation treatment as I'm well aware that proper nourishment is a must to boost the immune system and keep "big c" cells dormant. So, I complement each spoonful with sips of water in aid of chewing and swallowing. I'm grateful and blessed to have family and friends who fully understand my "eating difficulties" - slow-paced, in small quantities, sometimes nearly "choking" because food get stuck in my throat, etc.

    At home, I always have a glass of water within reach to "refresh" my throat every so often. When eating out, the first thing I ask for is water and I also warn whoever I'm out with (esp. those who aren't aware of the side effect of treatment) that I eat slow, take time chewing to ease swallowing.

    Though faced with this "eating challenge", I'm thankful that I don't lose sight of the more positive side of my big c journey - that is, I'm up and about and able to welcome each new day with a cheerful heart. Certainly, a grace from God who is with me (and with all of us) every step of the way and will get us through the hurdles.

    So, my friend, a big hug to you with constant prayers. We're in this journey together. Take care always! You'll never walk alone. :)

    shine1113

    Hi Shine
    I would love to be able to talk to you a 12 years survivor of NPC, I have so many questions about how you are doing. A lot of my side affects I don’t know if they are normal or something else wrong with me. I plan on living the rest of my life or at least as old as my Dad was and he lived to 85. As you said we never walk alone my faithful friend Jesus is always there with me. :+)

    Thanks
    Hondo
  • dales2loud
    dales2loud Member Posts: 45
    Robt54697 said:

    Eating
    Hi Hondo,
    Brand new to this and just registered. I am 30 days post radiation. Had surgery, chemo, and radiation. Tonsil and several lymph nodes removed. Just depressed but do not take any anti depressants. It has been such a struggle to eat enough. Went from 166 lbs to 148 and have always worked out and been strong and healthy so just get down sometimes. Maybe you can click on my name and see pic and story. Anyway that is all. Thanks.

    Robert

    Me too!
    Robert,
    I'm 32 days post radiation, I've starting to get my taste back. I too miss the gym and working out, last true work out was in May. I have returned to work but when I get home I'm pooped! I seem to be getting a little stronger everyday but it is a slow ride. Hang in there and you Will get better!
    Dale
  • dales2loud
    dales2loud Member Posts: 45
    Robt54697 said:

    Eating
    Hi Hondo,
    Brand new to this and just registered. I am 30 days post radiation. Had surgery, chemo, and radiation. Tonsil and several lymph nodes removed. Just depressed but do not take any anti depressants. It has been such a struggle to eat enough. Went from 166 lbs to 148 and have always worked out and been strong and healthy so just get down sometimes. Maybe you can click on my name and see pic and story. Anyway that is all. Thanks.

    Robert

    Me too!
    Robert,
    I'm 32 days post radiation, I've starting to get my taste back. I too miss the gym and working out, last true work out was in May. I have returned to work but when I get home I'm pooped! I seem to be getting a little stronger everyday but it is a slow ride. Hang in there and you Will get better!
    Dale
  • CAjim2011
    CAjim2011 Member Posts: 15
    Hondo said:

    Hi Shine
    I would love to be able to talk to you a 12 years survivor of NPC, I have so many questions about how you are doing. A lot of my side affects I don’t know if they are normal or something else wrong with me. I plan on living the rest of my life or at least as old as my Dad was and he lived to 85. As you said we never walk alone my faithful friend Jesus is always there with me. :+)

    Thanks
    Hondo

    Yes Hondo, Jesus has walked
    Yes Hondo, Jesus has walked with me through this process and continues to do so.
    I am 7 weeks post rad, had TORS in April and Mod rad neck in May. No taste of food makes it a chore to eat. Had barium swallow today to investigate my swallowing problems (choking). I just pray to Jesus and place my problems with him.

    Jim
  • Hondo
    Hondo Member Posts: 6,636 Member
    CAjim2011 said:

    Yes Hondo, Jesus has walked
    Yes Hondo, Jesus has walked with me through this process and continues to do so.
    I am 7 weeks post rad, had TORS in April and Mod rad neck in May. No taste of food makes it a chore to eat. Had barium swallow today to investigate my swallowing problems (choking). I just pray to Jesus and place my problems with him.

    Jim

    Hi Jim
    Pray and Time is all that is needed my friend. I had the choking thing for sometime after my last treatment but then it went away for years, not I guess it is time to come back for a re-match.

    Agree with letting Jesus take the wheel, I just got to stop myself from trying to take it back sometimes
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member

    Rarph
    I am sure Hondo will chime in with his thoughts also. The side effects that you are having now, may be different from long term side effects. I know after treatment my tongue was swollen and it hurt so badly that anything that touched it felt like glass shards. Also my tongue would not manipulate the food around my mouth the way I wanted it to. It is better now, but it is still not the way it was prior to radiation. I cannot whistle, stick out my tongue, roll my 'R's', curl my tongue, also my 'th' when I speak is weird.

    The reasons it's hard still for me to eat are:

    1. Trismus. It's like lock jaw, your mouth doesn't open very far.

    2. Severe dry mouth. Not only from radiation, but I had my left salivary gland removed during my neck dissection.

    3. I have a stricture from radiation damage. I have been dilated a total of three times, twice since radiation ended. I have to chew my food very, very well and swallow miniscule amounts or it gets stuck. I also drink milk with dinner. My stricture is still pretty bad, one tiny piece of unchewed barley gets stuck. That is not a lot of room.

    Rarph
    I agree with what Sweet is saying most of your problems will go away as your body heals from all the affects of the treatment. Most of my problems are from being radiated twice to the same area and all directly to the face “Frankenstein”, ha ha, I can still joke. Keep tabs on your Jaw and if you see you are not getting the motion you should have you might need to get some help or a device to help you keep it open.

    Chocking is always a big problem with me and like others I need to chew my food like a cow does over and over again before I swallow

    Wishing you well
    Hondo