eating problem...Help!

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BudStamm
BudStamm Member Posts: 19
in Head and Neck Cancer #1

First let Me say I have finished My radiation and chemo treatments 4 weeks ago....My CAT scan has come back clean and now waiting till August to take My PET scan...

 

I do have a problem....I have a feeding tube and they wont remove it till I take in 80% My calories by mouth...right now I am doing 100% of My intake by My feeding tube. I have no siliva...My mouth is dry all the time...I rinse out my mouth and spit it into a cup as I can barely swallow even water. When I rinse out My mouth it rehydates a ycky sticky thick mucus that gags Me....I end up with the dry heaves trying to clean out my mouth and throat of this yucky nasty thick mucus. Because my mouth is dry all the time and My throat is VERY narrow I cant eat....I have heard of people being on a feeding tube for several years......God Forbid!!

Has anyone gone through this?....if so what did you do to get to the point you could eat...HELP!!

 

Thanks in advance!!!

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  • jackflash22
    jackflash22 Member Posts: 524 Member
    #2
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    Eating

    I have put several recent posts on throat restriction. My throat was completely blocked for almost two years. I had a dilation by the surgeon going through my peg tube up to the esophogus at the same time another surgeon going through the throat and both of them meeting to make a hole in my stricture...radiotherapy damage...I won't go into it as if you look at the Jackflash posts you'll see how well I did in the end. I did have a tough time at first. I found as soon as I started to use my throat more the less the mucous got. If you can drink water keep drinking. The thicker the fluid the easier it is to swallow without it going the wrong way. The dietician can give you a clear powder to mix with water to make it easier to swallow. I'm now normal weight and can take anything liquid by mouth, I still struggle a bit with solids. I drink five ensures a day 2000 calories. I was drinking more to gain weight but now I'm a healthy weight I'm sticking to 2000 calls to maintain. I can manage yoghurt, custard,soups etc. I have still got my peg tube as I haven't finished dilations yet. I have my last one next month about 10 in all over a period of time. 

  • MrsBD
    MrsBD Member Posts: 615 Member
    #3
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    Eating

    Oh yuck. The mucus stage. Many of us have not so fond memories of choking like you described. My doctor recommended Mucinex (guaifenisen) to help thin the mucus and a humidifier at night. Water was harder for me to swallow than food. Warm soup and canned pasta slid down without as much trouble. The more liquid you can take in, the better you will feel. At four weeks since the end of treatment, you are still fairly early in the healing process. Hang in there. It took about four months for me to feel good again. It's been 8 months and I feel blessed to be just about back to normal. Great news about the scan!

  • Eversteve
    Eversteve Member Posts: 23
    #4
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    Welcome and also Sorry for your reason being here

    Firstly if you dont mind me saying... many of us has experianced this problem SO YOU ARE NOT ALONE. But I shall come back to that part in a moment.

    Secondly, you are alive so that is the main thing, so stay strong.

    Now, the feeding tube is also something that did my head in at first as well, but you do get used to it, so be patient. It sounds as if you had the advanced system of radiation (just a guess) where I think they shoot 3 beams at different angles which focus at "THAT POINT" - I had the same and my throat - even 4 years after my treatment, is constricted still to a certain extent. YOU WILL ADAPT.

    How I got over the mental hurdle of usng the tube was to only use it at night - so it fed me whilst I as sleeping. It is probably not the best way, but I wasnt going to walk around with the pump making its noise. Give it a few months - for me it was 8, but everyone is different and you will be amazed how your body will strengthen and cope and you will be back to eating solid food.

    You mentioned that you couldnt drink water - again very common - the thing that got me is I couldnt drink beer !!

    You are ony 4 weeks after treatment - the treatment hits the body hard, very hard..... be patient even though it is so frutrating, keep the faith and dont let that "bsttard" put you down.

    Have a look around the site - there are many, many survivors that can assist you every step of the way to recovery and when you have "those bad days"

    Good luck

    PS I can out spit you - I am trying for the World record regards distance and accuracy

     

     

  • lornal
    lornal Member Posts: 428
    #5
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    Club Soda

    Try swishing, gargling, and swallowing club soda or flavored carbonated water (Mendota Springs).  It will help loosen the mucos.  Water will just slide right over, but the club soda will break it up.

    Lorna 2007 & 2014

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #6
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    Takes a bit of time

    Bud,

    As the others have mentioned, it takes some time to recover from everything we go thru. Some people bounce back quickly, others take a bit longer. You have been thru the mill, you are still in the "Cooking Stage" as it lasts anywhere from 4-8 weeks and sometimes a bit longer.

    We all know the feeling of wanting to get back to our normal routines, but it doesn't happen over night after the last treatment. We learn to measure our recovery in weeks verses days. Do as the others mentioned, gargle with some soda water, or whatever it takes to break up the mucus.

    Remember, your neck is swollen inside and out from the radiation so your passageway is narrow at the moment. When the swelling goes down, it should open up some more, but remember, you are still "Cooking" for a bit. We need to be hydrated, so get the fluids in even if it takes some time thru the PEG Tube at the moment.

    My Best to You and Everyone Here

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #7
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    MarineE5 said:

    Takes a bit of time

    Bud,

    As the others have mentioned, it takes some time to recover from everything we go thru. Some people bounce back quickly, others take a bit longer. You have been thru the mill, you are still in the "Cooking Stage" as it lasts anywhere from 4-8 weeks and sometimes a bit longer.

    We all know the feeling of wanting to get back to our normal routines, but it doesn't happen over night after the last treatment. We learn to measure our recovery in weeks verses days. Do as the others mentioned, gargle with some soda water, or whatever it takes to break up the mucus.

    Remember, your neck is swollen inside and out from the radiation so your passageway is narrow at the moment. When the swelling goes down, it should open up some more, but remember, you are still "Cooking" for a bit. We need to be hydrated, so get the fluids in even if it takes some time thru the PEG Tube at the moment.

    My Best to You and Everyone Here

    mucous and feeding tube issues

    Thank goodness the tube is in place or you would be having serious problems concerning nutrition.  My husband had his in place 6 months but never had to use though with his type of cancer and stage that is extremely rare.  What worked?  Baking soda gargle twice a day without fail and Mucinex daily.  Both prescribed by his oncologist.  Biotene rinse and spray as needed for dry mouth but that was minimal.

    Things will get better: word of warning, though.  Jim took in no less than 3500 calories a day but still lost 60pounds starting about 3 months after radiation ended losing down to 119 pounds.  Happens that way for some.  Five years out and he is back to a healthy weight of 170.

    Hang in there!

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #8
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    Everyone is different

    You'll see that mantra posted over and over. Fact is, it's true. We all respond differently to treatment and side effects vary greatly. I went through what you did after treatment as well. Totally tube fed for about a month or so. I was able to sip and swallow water but I always added extra to my feedings to keep hydrated. The mucous was nasty and I slept in a recliner from about 3 weeks into treatment to about two months afterwards as I couldn't lay prone. Finally a little over a month out, I had my first solid food... one soft scambled egg. It wasn't until about 4-5 months afterwards that I was able to consume enough to maintain my weight and have the tube removed. 

    Hang in there. It gets better.

    Positive thoughts and prayers

    "T"

     

     

  • wmc
    wmc Member Posts: 1,804
    #9
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    Sorry Bud, but it will get better......

    Bud I can't add much as everyone has covered it. Your mucus is thick because you need more water, a lot more. Now liquid intake counts as just that liquid, not water. I know the feeding tube is rough to do but along with the feeding you need to add more water to thin your mucus. Example is mike is liquid, but it will make your mucus thicker, so to drink a glass of milk I have to take the same or more water to keep my mucus thin. Some have mention Guaifenesin [Mucinex] which can help, but it needs to be taken with at least 8oz of water. I would try to rince with the club soda then try to sip water or at least Ice chips which will help thin the mucus and het some swallowing that you really need to do as it will get harder the longer you go without swallowing. You are what is called "Still cooking" from the radiation and will for a few months. Just take one day at a time, and try, try, try to get more water. Some even add a twist of lemon to the water and that will help as well. You will get through this and get better............

    Bill

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