eating problems

78MAPLE
78MAPLE Member Posts: 8
edited March 2014 in Head and Neck Cancer #1
good morning, i am my husbands caregiver. he was diag. in sept. had rad & chemo in oct. surg. in dec. chemo & rad in feb. he has had his j-tube in since dec.10. and they are talking of removing it in april. he still cannot eat well. nothing wants to go down he has alot of phelm still coming up. he carries his spitty cup all day. very weak, tired, but my main concern is his inabilty to swallow. he was dialated once already. he takes iressa daily, thats all, alittle morphin at night. please help.

Comments

  • Rogge
    Rogge Member Posts: 5
    #2
    Here is my opinion. Sometimes words sound harsher in print then they are meant to, and believe me I am not trying to be mean spirited or critical, but just provide one viewpoint. Before I got started on my chem/rad/surg they put a j-tube in my stomach. I fought them on it and lost that fight so they put it in anyway. During practices with feeding of the various liquids I found that for whatever reason I couldn
  • bke
    bke Member Posts: 42
    #3
    It may be he needs another dilation. I had three within three months after surgery. The third one seemed to do the trick. I found that eating got increasingly better the farther from the chemo and radiation I got. Talk to your doctors. Don't be afraid to let them know your fears.
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • sangeeta
    sangeeta Member Posts: 1
    #5
    unknown said:

    This comment has been removed by the Moderator

    Hi!! My huband went through esophagectomy in April and i would like to know what to expect after the surgery. would u be kind enough to share some info with me?
  • stevem848
    stevem848 Member Posts: 1
    edited June 2017 #6
    Hello everyone, I'm in my 3rd

    Hello everyone, I'm in my 3rd month after completing both radiation and chemo for treating squamous cell of the lymph glands.  Chemo was worst during the process, had one night passed out due to pain and cold sweats but radiation seems to have the longest lasting negative side effects.  

    I’m also having to deal with dehydration, constant dry mouth and phlegm.  I haven’t found anything to help.  I use Biotene spray and Oral Balance Gel and that is a temporary fix but still no saliva and I am not eating much.  I have a j-tube and a night machine that keeps my weight somewhat stable, 161 lbs, even though I’m down 30 from my pre-therapy weight.  I can swallow without pain but I cannot eat because the taste & texture are so bad, like trying to swallow a clay ball, just not happening.  I can drink milk so I do it often and frequently, also ice cream is manageable.  I’m frequently angry at myself for not doing better at eating but then I joined this site and after reading your stories I think I need to change my attitude. 

    Here is my story: I’m 59 and last year, August of 2016, I played tennis in the USTA team league for 55 and over in the 3.5 level winning regionals in Texas and going to nationals in Arizona where we came in 7th.  The other day I got out and played 2 sets but couldn’t make the 3rd as I was too weak.  I’m walking a mile a day and exercising lightly but not satisfied with my progress.  In spite of my dissatisfaction with my progress I guess I should be thankful. 

    Because I’m hearing from you that some get part or most of their eating ability back in 6 to 7 months and others are saying that all is not completely returned for up to 24 months, I am going to be more patient with myself and not think that I’m just too soft by not forcing myself to eat and swallow when by the third bite I’m almost gagging on the lump of clay I’m trying to get down.  I read the other day that the healthy body produces from 5-7 pints of saliva per day and mine is producing next to none.  I’ve got a way to go. 

     

    Sure hope my post helps someone as your stories have helped me.  

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited June 2017 #7
    I'm going to suggest you look

    I'm going to suggest you look in to some alternatives to Biotene.  I did a fair amount of research a month or so back, and the Biotene products you are using are not the formulations that made them successful before Glaxo bought out the original company.  I have had huge success with a mouth wash called ACT Dry Mouth, and mouth gel called BioXtra Dry Mouth.  I get both of those via Amazon, BioXtra is only available thru an Amazon affiliate in Canada.  Biotene is okay, but these other two actually promoted healing of lingering problems like Thrush.  Search this site and I made a bunch of notes on what I learned.  I still suffer from some drymouth symptoms, but my tongue is a nice healthy pink. I plan on continuing that treatment regimen for at least the rest of the year.  This week I pretty well crossed the border into eating pretty much everything.  As the variety of food has improved I find I'm actually getting hungry.  I'm 3 days shy of finishing 6 months post.  I'm 65, had Stage III HPV+ SCC with 35 IMRT/7 carbo-taxol.

    Last year I led a couple of week long class IV whitewater raft trips.  I was supposed to be launching on the Grand Canyon around the time my treatment started.  This year I'm patching holes in the lawn, pruning my much neglected fruit trees, and trying to cleanup my workshop. Next week I start lap-swim again, use to be at least 1,500 meters a day, 3 times a week.  We'll find out; could be 100 meters is ambitious.  I hope next year I'm strong enough to at least do a few rafting daytrips.   But the time comes for some things to end and for new things to begin.  I'm a life long student of natural history.  Post  early retirement I did yet another undergrad, this time in Earth Sciences.   My program advisor and mentor is a scrawny little 79 y.o multiple PhD.  A mutual friend once described doing field work with him as like being tethered to a two year old billygoat -  "He just keeps hoping around".  At 10,000 ft in the rockies.  His mid-term exams were proof of psychosis. He's always looking for volunteers.  That could be interesting.

  • caregiver wife
    caregiver wife Member Posts: 234
    #8
    stevem848 said:

    Hello everyone, I'm in my 3rd

    Hello everyone, I'm in my 3rd month after completing both radiation and chemo for treating squamous cell of the lymph glands.  Chemo was worst during the process, had one night passed out due to pain and cold sweats but radiation seems to have the longest lasting negative side effects.  

    I’m also having to deal with dehydration, constant dry mouth and phlegm.  I haven’t found anything to help.  I use Biotene spray and Oral Balance Gel and that is a temporary fix but still no saliva and I am not eating much.  I have a j-tube and a night machine that keeps my weight somewhat stable, 161 lbs, even though I’m down 30 from my pre-therapy weight.  I can swallow without pain but I cannot eat because the taste & texture are so bad, like trying to swallow a clay ball, just not happening.  I can drink milk so I do it often and frequently, also ice cream is manageable.  I’m frequently angry at myself for not doing better at eating but then I joined this site and after reading your stories I think I need to change my attitude. 

    Here is my story: I’m 59 and last year, August of 2016, I played tennis in the USTA team league for 55 and over in the 3.5 level winning regionals in Texas and going to nationals in Arizona where we came in 7th.  The other day I got out and played 2 sets but couldn’t make the 3rd as I was too weak.  I’m walking a mile a day and exercising lightly but not satisfied with my progress.  In spite of my dissatisfaction with my progress I guess I should be thankful. 

    Because I’m hearing from you that some get part or most of their eating ability back in 6 to 7 months and others are saying that all is not completely returned for up to 24 months, I am going to be more patient with myself and not think that I’m just too soft by not forcing myself to eat and swallow when by the third bite I’m almost gagging on the lump of clay I’m trying to get down.  I read the other day that the healthy body produces from 5-7 pints of saliva per day and mine is producing next to none.  I’ve got a way to go. 

     

    Sure hope my post helps someone as your stories have helped me.  

    Eating after radiation

    Welcome, Steve!  Have you tried blending??  Use broth and milk to liquify almost anything!  Husband could do creamy soups, but not broth.  Be creative!  The more you eat, the more you will be able to eat.  A speech therapist can help you with swallowing exercises.  The saliva, phlegm, dry mouth will improve depending on you specific treatment.  Husband swore carbonated drinks helped clear phlegm.  He would sip with a straw.   Not to frighten you or others, his cancer was not operable and the radiation ran all the way down his throat and around his larnyx.  We are at six year mark with feeding tube, still experimenting.  We are very thankful to be where we are.  He makes lots of cakes and cookies.  Dunks them in milk!

    Best wishes in you continued recovery!

    Crystal

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