Cardboard

Hi. Here is a me, me, me message that leads to a question.

I have base of the tongue cancer and I just finished my 3rd week with a combination of chemo and radiation. The treatment has killed almost all taste buds and many salivary glands.

The total lack of taste has given me negative incentive to eat and I’m losing way too much weight – 25 pounds in the 3 weeks. I am putting a lot of formula into my feeding tube but it seems I won’t gain enough weight if I don’t eat some things in addition – not to mention the need to chew.

I just don’t seem to have the ability to force cardboard tasting stuff down for the sake of nutrition.

Any ideas?  Thanks.

Marco Polo

Comments

  • MrsBD
    MrsBD Member Posts: 615 Member
    Cardboard

    Loss of taste is a common side effect. My cancer was also BOT, but I didn't have a PEG tube. Acupuncture helped to preserve my salivary glands and I believe it also prevented loss of taste. I really wasn't sure it would work, but during my first session, there was a rush of saliva. The acupuncturist used a protocol developed by MD Anderson Cancer Center in Texas. Other than acupuncture, just keep trying different foods. Use more herbs and sauces to add flavor. Try a higher calorie liquid nutrition product or make your own shakes, focusing on protein to help rebuild your tissues. You are almost halfway through treatment,  and you'll still have several weeks of healing afterward, but you can do this!

  • phrannie51
    phrannie51 Member Posts: 4,716
    Well...one thing is for sure here....

    you aren't the first one to liken all food to cardboard.....or sheet rock....LOL.  Tasteless and dry keeps these two items as the main comparables when we talk about eating during rads.  Temporarily....movitvation to eat has changed from "live to eat" to "eat to live"....I did learn that blander is better....soft scrambled eggs, creamy soup (like cauliflower and cheese)....and my big go to during rads was whole milk....I was doing 1/2 gallon a day.  Ok, none of these taste great, but they go down easy, and keep your swallower working (that's main reason for swallowing on a daily basis).  Oh....and I could taste shrimp so had my sister make me shirmp salad with macaroni, mayo, onion.....onion I could always taste somewhat. 

    I also used Boost VHC (Very High Calorie) for my tube.....it got over 500 calories into me per 8 oz carton, rather than 325 calories....get more calories with no extra effort. 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    saliva

    Jim had an injection before every radiation treatment meant to protect saliva production.  I believe it was called amofostine but will check.  He had 35 roads and 3 chemo treatments for inoperable hypopharyngeal and cancer.  Jim had a PEG but did not have to use.  Jim did, however, lose a lot of weight after treatment was complete in spite of a high calorie diet.  Five years later he has gained it back and is cancer free.

    For the dry mouth he experienced he used  Biotene products.

     

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Let me say welcome and sorry you need to be here. I never had to have chemo or radaiotin, only surgery so the others will advise you on that. What they are saying is what all have pretty much said. Now it is not easy but you have eat to live,and keep swallowing as well. You can forget how to. I was not alowed to swallow for about nine days and they removed my larynx and had to learn all over again how to do that. I even begged for Ice cube and the answer was no. I only had an NG tube and could not get down enought so I lost weight. I dropped to 126 at the time of surgery. So far the advice has been right on. Stay hydrated, and soft foods, try pudding and crackers, milkshakes and anything you can get down. Sip water with each bite if you need to because the lack of saliva. Hang in and just take one day at a time to get through this. It will get better in time, but it is a rough road you are going down, but you can get through it. We will keep you in out thoughts and prayers.

    Bill

  • phrannie51
    phrannie51 Member Posts: 4,716

    saliva

    Jim had an injection before every radiation treatment meant to protect saliva production.  I believe it was called amofostine but will check.  He had 35 roads and 3 chemo treatments for inoperable hypopharyngeal and cancer.  Jim had a PEG but did not have to use.  Jim did, however, lose a lot of weight after treatment was complete in spite of a high calorie diet.  Five years later he has gained it back and is cancer free.

    For the dry mouth he experienced he used  Biotene products.

     

    Yup....Amifostine....

    I had it, too....and so did Skiffin.  I don't hear about people getting it anymore.....I don't know if it protected my saliva glands very much....but the one thing in common for most of us who got it....we did not suffer the horrible mucous....and that was a godsend.

    p

  • MarcoPolo49
    MarcoPolo49 Member Posts: 2
    Cardboard (and Elmer's glue)

    Thanks, everyone. This is very helpful!

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    welcome

    Me, me, me,

    Whether you eat, drink or PEG you need  to get the cancer fighting nourishment your body  needs.  Put some honey on the cardboard and drench that sheet rock in olive oil, do whatever it takes.

    AND remember to drink often and swallow, swallow, swallow.

    Matt

  • Sailor123
    Sailor123 Member Posts: 97
    Hi Marco Polo:
    I also

    Hi Marco Polo:

    I also couldn't eat much and had no desire to swallow anything at the stage you are at.  I know its important but it just wasn't in the cards for me.  I did however only lose nine pounds and no lean muscle mass.  I did this by putting a smoothie in my tube daily that consisted of a raw egg yolk, whey powder, yoghurt and beets and carotts.  If you have a vitamix this worked very well for me.  You don't want to lose too much weight or its much more difficult to bounce back.  I also put in an avocado and bone marrow soup.

    Good luck.

  • SASH
    SASH Member Posts: 421 Member
    Adding extra calories

    You can purchased weight gain powder at most health food stores.  Some of these will as many as 700 calories per serving and you just add it to any type of drink.  Some are flavored others are just empty calories.  A couple of servings of this a day would really help with the weight loss.

  • Hondo
    Hondo Member Posts: 6,636 Member
    Cardboard

    You will get use to it after a while; the good news is that sometime after your treatment ends your taste will come back. Survivors like me will never get taste back that is when it really sucks. But all in all I am glad to just be alive now and after 3 years on the PEG tube I am use to everything tasting the same it is a small price to pay to be alive. I pray that soon you will be able to start tasting something; you just need to keep trying

     

    Tim

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hi, Marco.  sorry you're

    hi, Marco.  sorry you're having this problem already but it is very common.  but it is extremely important that you try to eat, and just as important that you swallow, swallow, swallow.  if you dont swallow, a lot, you can lose the ability to swallow and you dont' want to do that.  like others said, add stuff to your food to help with flavor.  we all know its hard to eat when nothing tastes good but you must keep your nutrition up.  you will need that for strength.

    God bless you,

    dj