Can NOT eat ANYTHING--HELP!!!

I'm almost halfway through chemo (Cysplatin) and radiation on my throat. I can't eat ANYTHING without gagging.  Even water tastes terrible although I can still swallow. I'm rapidly losing weight and will evidently have to have a feeding tube. Has anyone else had the not being able to eat problem?

hi,

yes i had the same trouble

I already had my peg tube in before I started my treatments, my Dr gave me no choice so I did it and it was a life saver

I would tell you to get it as soon as possible because you will want as much energy as you can have to heal from the surgery .

The peg will allow you get all the nutrition you need as well as hydration through the peg and then just focus on the water and soft foods like scramble eggs and chicken broth with pasta stars worked very well for me.

I used Jevity 1.2 in the tube and it worked out well

I ordered it on line and really worked out well for me

john 

Not only will the PEG help you get needed nutrition, it will relieve the stress on your throat that the necessity of swallowing creates.  Remember, chemo and radiation affect healthy cells as well as cancer cells - with receiving both treatments simultaneously, your poor throat is getting a double whammy, so look forward to the PEG not as an odious, nasty consequence of treatment, but as a much needed rest for your throat.  Many people have PEGS put in and do extremely well.  Requires a little bit of patience to learn how to take care of it, but keep a positive attitude and it will become an acceptable part of life, for however long you need it.

There have been a lot of posts in the past month about PEG's . (Go up to the search box and enter PEG tubes - you'll get about 4 pages of results!)  some contain pretty negative comments and specifics, but overall these messages present a picture of lots of people coping very well with PEGs. I have a friend here who has a PEG tube, she can probably give you some excellent information and encouragement - I don't think she's on the board right now, so  I will send her the link.

Hang in there - things are always darkest in the middle of the tunnel, and that's where you're at.  But the tunnel will end, and no matter where you are in the process, you can still keep kicking cancer in the butt!!

Sincerely, Tre

 

On 8/16/2008 trumpetman wrote:

I'm almost halfway through chemo (Cysplatin) and radiation on my throat. I can't eat ANYTHING without gagging.  Even water tastes terrible although I can still swallow. I'm rapidly losing weight and will evidently have to have a feeding tube. Has anyone else had the not being able to eat problem?

Hi trumpetman -

Tre just emailed me that you were asking about PEG tubes. I was also determined to make it without one.  Two weeks into treatment I had lost 23 lbs. and had to be met at the door of the treatment center with a wheelchair.  All my resistance was gone as I realized I needed every bit of strength I could manage to fight cancer.  I'm not an expert but my PEG tube and I have been together a year now.  One thing I could have done to help myself get back to swallowing on my own a little sooner may have been to continue drinking water or milk (which was easier as time went on).  That would have helped a little with the muscles that control the flap that closes over our esophagus.  My peg and I will be parting company in two weeks as I am now back to eating - a little slower and a little different of a diet - but I am eating enough to be on my own. 

When I first got my tube, the nurses all explained how to use a syringe with a plunger (the push syringe method).  It all sounded very complicated but I tried it by myself and also had others do it for me.  One friend accidently pushed too hard on the plunger and tried to pull back which was a little unpleasant and caused air to enter my stomach.  I eventually found that the method that worked best for me (and by far was the easiest) was the gravity syringe method - simply remove the plunger and throw it away and work with only the syringe.  Your tube will have a cap that closes it.  Just open the cap and insert the syringe into the end of the tube and hold it in your left hand (if you are right handed).  I crook my little finger under a second notch on the side to keep the syringe in the tube while the "food" is flowing into it.  Hold the syringe & tube up in the air far enough to allow the "food" to flow down the tube easily.  You can raise the tube higher to speed up the flow or lower the tube to slow down the flow of formula.  I always put a small amount of water into the tube before putting any Jevity 1.5 in (I used 1.5 as recommended by my doctor).  I found that doing a feeding of 1 1/2 cans at a time worked best for me and then worked up to 2 cans at a feeding but you might be able to handle more.  Someone will let you know how much they want you to get depending on your weight - CTCA had a nutritionist that worked with me.  Until you find what feels the most comfortable for each sitting, it may be trial and error.  After you are through with the feeding, then put the remaining water from a 16 oz bottle in the tube.  This helps to flush out the tube as well as hydrate you.  I also used the tube throughout the day to add a bottle of water at a time to help with hydration. 

I want to mention one thing that IF you ever get into a position that you run out of the prescribed food, you can use Ensure or one of the other supplements found at any drug store.  I became frantic when I spent an extra day at my daughter's and ran out of my Jevity 1.5.  I was desperately trying to find somewhere that sold it.  I was finally told that it was okay to use Ensure for a day or so. 

I was prescribed Reglan - a liquid medicine that I put down my tube 1/2 hour before feeding.  This prevents acid reflux.  You will be instructed not to lie flat for an hour after each feeding.  I couldn't lay flat during the latter days of my treatment anyway so I was already sleeping in my recliner.   

Of course, it goes without saying to always wash your hands before a feeding and to keep everything as clean as possible that touches your tube.  You will have what they call a drainage sponge around your tube -it is just a gauge pad that has a slit in it that fits perfectly around your tube.  Keep that clean - change daily or every other day but never go more than that. 

I ordered my Jevity 1.5 from a medical supply place that the CTCA (where I was treated) had called for my first order.  Not only was my Jevity paid for by insurance but so was the drainage sponges and the tape to secure the sponges with.  Also, my syringes were paid for - I changed syringes every day or two.  Everything was delivered to my door. 

They will explain to you what to do if your tube becomes clogged but in a year I have never had a problem. 

That is all I can think of at the moment but if you ever have a question someone here can answer it for you as we have all been there.  You will find it a relief to have the tube because you won't have to worry about getting food down you or medicine down you.  You can even crush pills and mix with a small amount of water and put down the tube.  PEG tubes have been a life saver for myself and many others.  As someone said on this forum, welcome to the second belly button club (I had never even thought about that before but I guess when it comes out I will have a second one).  Take care of yourself - I pray for everyone on this site on a daily basis.  We are fortunate to have each other for support.

Diana 

 

  

so I am now 4 weeks out from radiation, have a PEG and am trying to start to find things to eat again so I can get rid of this.   Liquids are OK unless they are too tart like tomato soup but I can only manage to get s small number of spoonfuls down of even the soups that I can swallow.   How long before you could swallow and what things worked for you.   How long should I expext to have this PEG?  I know everybody is different but any advise would be welcomed   thanks

 

On 8/16/2008 trumpetman wrote:

I'm almost halfway through chemo (Cysplatin) and radiation on my throat. I can't eat ANYTHING without gagging.  Even water tastes terrible although I can still swallow. I'm rapidly losing weight and will evidently have to have a feeding tube. Has anyone else had the not being able to eat problem?

 

you can always get iv nutritional support  im a nurse and cancer survivor email me  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

On 10/16/2008 LYNNKE wrote:

so I am now 4 weeks out from radiation, have a PEG and am trying to start to find things to eat again so I can get rid of this.   Liquids are OK unless they are too tart like tomato soup but I can only manage to get s small number of spoonfuls down of even the soups that I can swallow.   How long before you could swallow and what things worked for you.   How long should I expext to have this PEG?  I know everybody is different but any advise would be welcomed   thanks

Hi Lynnke

As you said, everyone is different.  I am almost a year post treatment and I finally got mine out the end of August.  Shortly after treatment, I was so anxious to get back to normal that all I could think about was getting rid of the PEG tube but I soon realized it had given me my life during treatment and continued to do so afterwards.  When my tube finally came out it actually felt very strange to be without it.  I've seen where others on here have quickly had the tube removed only to regret it.  It will be a while before you will be able to get down the amounts of liquid/water that you need to sustain yourself and also the amount of foods to maintain your weight so don't be overly anxious to part with your PEG tube.  Concentrate on getting back to eating rather than getting rid of the tube.  Your doctor will probably want to make sure you are eating without using the tube for one month before he will remove it.

I found when my taste buds returned they really came back.  Foods tasted almost gritty if I added any salt (this will pass eventually); however, I loved hot spicy foods before - now I can't tolerate them.  The last time I tried a Spicy Chicken Sandwich from Wendy's (one of my favorites before treatment) I coughed and sputtered after one bite - my husband traded sandwiches with me because there was no way I could eat it (he doesn't care for hot and spicy so an act of love to trade wtih me).  I loved jalapenos on Portillo hot dogs (a speciality in Chicago area) but I can no longer eat them.   Now for what you can try to eat.  One favor you can do yourself is to go to a buffet - the larger the better.  There you can try bites of a multitude of foods and find out what you can handle.  Now you know what to fix at home.  Keep checking it out once a month (not more often or you will be discouraged) to see if there are any changes.  Liquids will be the most difficult to get down.  Soups with crackers in them went/go down easier than soup without.  Mashed potatoes and lots of gravy (lots and lots of gravy because it helps many items go down easier) remain a mainstay.  Green beans are good, corn is a little more difficult, macaroni and cheese (Kraft w/ the package of powdered cheese as cheese in the stickier cheese packetts tend to stick in the throat), baked beans slide down okay.  Lettuce salads & slaws will come farther down the line so steer away from while getting back to eating.  The first meat I was able to get down was ham - like the ham butt you buy or the thick ham slices off of a butt packaged by the suppliers (not the lunch meats - thinner slices were difficult in the beginning but getting easier).  It continues to be the easiest to get down as it has more moisture in it.  I loved ham so this is a blessing for me.  Breads are more difficult to get down so steer clear of in the beginning.  Steaks are still the most difficult to get down and were impossible in the beginning.  Pork chops were more difficult (much to my dismay) - any meats wtih a denser composite are more difficult to swallow.  They can lodge in your throat.  Chickens were easier (especially dark meat because again it has more moisture in it).  If a piece of meat does get stuck - don't try to take a drink of water to wash it down because it won't happen.  It only makes it worse with the water getting to the meat and stopping.  Cough it back up.  I had a good cough reflex which came in handy. 

Always keep in mind, any foods that are moist help it to slide down easier.  Stickier foods can get stuck along the way.  One problem we experience when we have radiation on the throat area is the muscles that control the flap over the esophagus take a hit and do not have the strength to close off the esophagus quickly enough after we swallow.  This can cause aspiration and one can wind up with asiration pneumonia (also silent aspiration that we are unaware of).  You will find you have to eat much slower.  My husband joked one time when we went out to eat that the restaurant closed at 9:00 (it was 5:30).  Trying to eat quickly still gets me in trouble.  Liquids are extremely difficult as they go down quicker and can make it down before the flap closes over the esophagus easier than foods.  Take a drink - hold it in your mouth a couple of seconds - hold your head straight and swallow.  I found if I turned my head I would begin choking.  I found/find milk easier to drink than water (more substance).  

I asked for a swallowing study two months post treatment.  It showed the improper functioning of the flap over my esophagus.  Some have reported they needed to have their esophagus stretched but this was not the case with me.  I did need swallowing exercises and VitalStem therapy by a licensed Speech Pathologist (not a Speech Therapist).  Not all Speech Paths are certified to do the VitalStem therapy so check before making an appointment with one if you do so.  I attribute the VitalStem therapy as the main reason I was able to begin eating.  I'm sure the exercises helped but the VitalStem is a tens unit that stimulates the swallowing muscles.  I began to eat within a month after starting the therapy. 

Keep in mind that you are over the worst - or you will be in a couple of weeks.  One of the big surprises for me was that our system continues to cook for 4-8 weeks post treatment but it does end.  We do begin the climb back but I have accepted that I now have a new normal when it comes to eating.  There will be foods I will probably never be able to eat again - but I'm not complaining - I am eating - slow but sure - and my last two scans have shown I am cancer free.  Remember - slow and steady wins the race.  Good luck! 

Diana  

     

 

 

On 10/16/2008 mchaelann wrote:

 

On 8/16/2008 trumpetman wrote:

I'm almost halfway through chemo (Cysplatin) and radiation on my throat. I can't eat ANYTHING without gagging.  Even water tastes terrible although I can still swallow. I'm rapidly losing weight and will evidently have to have a feeding tube. Has anyone else had the not being able to eat problem?

you can always get iv nutritional support  im a nurse and cancer survivor email me  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

A PEG tube is recommended by oncologists for people who have radiation on their throat (I had tonsil cancer).  It is generally recommended before treatment but some of us are too stubborn and only agree to it after we lose a tremendous amount of weight (I heard of two people on here who made it without a tube).  IV nutritional support is a life saver for many but a PEG tube serves multi purposes - not only for foods but pills/tablets can be crushed up and mixed with water to insert in the tube.  I also had hydration infusions under the care of visiting nurses (who weren't experienced in accessing my port so I wound up in the hospital with an infection in my port area) so I feel that it is also safer and easier to use a PEG tube for home care. 

The message you responded to was posted two months ago so trumpetman may have aleady had the PEG tube inserted and looking forward to having it removed in the future.

Diana    

 

I had radiation from the tip of my nose to the middle of my chest.  I lost so much weight and muscle mass.  I found the only thing I could eat was oatmeal.  It was gelatinous and was soothing and would swallow very easily.  Water tasted terrible.  I drank rootbeer floats and ice tea without sugar.  Sugar, salt and spicy were No-nos eversince.  I had the radiation in October 04.  I hope I have helped you somewhat.  Don't suck on hard candy unless it is sugarfree.  I rotted out my front teeth very badly.  I was lucky my dentist could rebuild them for me.  Because of dry mouth I get about 6 cavities every 6 months.  I use special toothpaste and mouth moisturizers all the time.  Regular tooth paste and mouth wash are too harsh.  I use Biotiene toothpaste and Oasis mouthwash watered down.  I use Oasis spray during the day.  I use Oral  Balance Gel at night to try to keep my mouth moist.  It took about 8 mouths before things tasted right.  I still find some things don't taste like they used to.  I was a water drinker all my life.  Now it still tastes yucky even though it is filtered.  I was a person that drank water almost exclusively.   If there is any other questions you have, please feel free to ask.  Kitty