5 months post last treatment

Dennis from Kansas

Hi my name is Dennis and im new to this forum.I have been reading all I can and finally decided to try to write.Im almost 5 months post treatment and still depend on my feeding tube.I have no saliva glands working yet and I have not been able to get much down.I probbaly need to let people know that my tumor was in my left tonsil and had spread to my other tonsil and about 5 other places in my neck.I had 35 rad treatments and I think 10 chemo.The radiation really did a number on my throat.Im from a small town with nothing so I have to drive about 20 miles to get to where I can buy food or gas.I had my treatment done there.They do not have a support team thier,I see there ads on TV and they advertise about the support you will have but so far they really havent been able to help me much.My last treatment was in January and they told me to get with my regualar doctor and they would see me in August after I had my pet scan.im really worried about my dependance on the feeding tube.Thanks for letting me vent,im glad i found this site,any help would be greatly appreciated.                         Thanks Dennis

CivilMatt

welcome to the vent club

Hi Dennis,

Welcome to the H&N forum, where 5 months post is good.  There are other members with PEG’s for a while.  If the PEG is not permanent, then it must be temporary and you can work toward a PEGless life.  If you can drink your calories, usually they will pop your PEG (provided you are not losing weight).  I only had a PEG for 2 weeks post, but drank a lot of smoothies for 7 months.  I sampled foods virtually every day and did find some favorites.  If  you are in pain (throat, mouth & tongue) you will need to work on that a little at a  time.  Recovery is a slow process, but it generally moves toward a satisfying “new normal”.

Maybe, the members on this site can be of help, they have all traveled a similar road with many bumps (and smooth spots).  Support is where you find it, even big cities can have low participation, it is just the luck of the draw.  But fear not, if you are like most of us, it does get better.

Good luck,

Matt

Dennis from Kansas

Thanks Matt

I really dont have any pain,but its almost like i forgot how to swallow.I did not mention that they pulled all my teeth so I cant chew.I am going to go in to town and go to a bafee so I can try different things.Thanks for your help.                                                                                                                                            Dennis

dygit

PEG tube

Had my PEG removed 5 months after insertion. My ENT told he would not let me get it pulled out unless I was able to eat for 2 weeks on my own without using it. I was so sick of it interfering with my sleep and life that I got motivated real fast and had it removed 3 weeks later.

It is a struggle with the lack of taste and you have to force yourself to eat. As mentioned, smoothies with whey, bananas, fruits, and veggie powder are a great way to get calories in you and wean you off the tube. Also, I started to eat cereal with soy milk regularly as I found that easy to down. It takes a while, but your taste should come back - am 10 months out and have 90%+ of my taste. Food is starting to taste pleasurable again!

Dennis from Kansas

Thanks Dygit

Ive had my peg tube for 8 months and i want to eat so bad.I think it would help if i had a appitie,but nothing sounds good.I just have to put my mind to it and get started like you did.Did you have your saliva glands working ?So far I havent any saliva to help me swallow,but I know Ive got to do something soon.Thanks for shareing.       Dennis

dygit

Dennis from Kansas said:

Thanks Dygit

Ive had my peg tube for 8 months and i want to eat so bad.I think it would help if i had a appitie,but nothing sounds good.I just have to put my mind to it and get started like you did.Did you have your saliva glands working ?So far I havent any saliva to help me swallow,but I know Ive got to do something soon.Thanks for shareing.       Dennis

Saliva

My saliva glands are barely working. I still sip water all day although less. A few things I have found that may help with getting taste back - chew gum, drink water with lemon, suck on sour candies. When I started eating again, I was sipping water with every bite. Now I can eat a number of bites without needing the water as much. Maybe my glands are working, but at night I keep a glass of water next to the bed and find myself sipping 4-7 times a night.

Make sure you get started eating - the longer you stay on the PEG, the harder it will be I think. I know how it sucks but you will get thru it!

Bobby_Lee

It took me about a year and a

It took me about a year and a half to get about 80 percent of my taste back.I had the feeding tube in for around 6 months and lost over 100 pounds. I was severely overweight to begin with so the weight loss just brought me down to around normal weight. I found that crushed Ice helped me alot as well as spicy food and strong stuff like garlic and spicy mustard. Mild hot sauce was just about the strongest flavor I could taste. Drink ensure even if you dont like it,force it in you, the strawberry wasnt too bad.

 

caregiver wife

Long term feeding tube

Dennis, sorry for the trouble you are having.

There is much that we don't know about your particular situation.  However, my husband was much like you.  Had all teeth extracted before treatment.  Radiation damage to muscles in neck.  I understand there are 40 muscles.  

You did not say if you had access to an ENT doc.  But your regular doc may be able to direct you to someone that can help with swallowing.  My husband was sent to a speech therapist that gave him exercises that were very helpful.

As to no teeth - blend everything!!  Beef broth and milk are excellant for liquifying most everything.  My husband did best in the beginning with cream soup, things of that texture.  Soft eggs fixed every different way.  Ice cream.  He now enjoys hot and cold drinks.  Mashed potatoes and gravy.  Yogurt.  Yams.  Eggplant.  

There are feeding tube products for long term users better than Ensure.  Ours comes monthly to our door through a medical supply company.  If you are dependant on the feeding tube, insurance may even pay for it.  (Medicare does).

You will find many here with whatever options you encountered.  The recovery is a journey in itself.

Crystal

Dennis from Kansas

Forceing myself

Im going to start eating if i have to force myself.I think ive been on the pitty pot and really not giveing it a 100 percent.Im so glad to be able to find people who can relate to what so many of us our going through.Thanks to everyone for shareing                Dennis

MMDowns

Hi Dennis from Kansas

I am from Missouri.  If you do not mind me asking where in Kansas? My husband had his treatments at KU Cancer center.  He is 6 weeeks post treatment and still has his PEG.  Eating is a very frustrating chore for him.  He can swallow but the food does not taste good and he gets so frustrated by that.  His dr. told him they wouldn't remove the PEG until he can eat solids food for at least a week. I hope by the end of summer he can get to that.  It's all one long, slow process.  

Sprint Car Dude

Chow

I started with eggs of about every form. The slippery the better. Periogis where something that would slide down easily with butter on them. I was told to gain 10 lbs and the tube could come out. So I ate eggs and drank milk by the gallon. Maybe even added a few quarters, cell phone, wallet, heavy boots and a hat to fool the scale. Seriously, I still can only eat a few foods that slide down easily. Milk and water are my only form of hydration. Nothing else is remotely drinkable due the foul taste. I can eat steak that is cooked medium rare. Well good luck and pray for saliva. Good Luck.

tbret

My answer to no saliva

Dennis,

This is my first post.  I had SCC, right tonsil, one lymph node.  I was scheduled to get seven chemo infusions but ended-up only tolerating five, but I had all 35 radiation treatments and so like everyone else here, I understand about how much "no fun" you are having.   I am just about six months from my last radiation treatment.  I completely lived on Ensure "Enlive" for a long time because food smelled and tasted awful and I could chug the Ensures while holding my nose.  That didn't always work easily but I got enough calories that I did not end-up with a PEG.

It sounds like you had it worse than I did.  If anything I say doesn't work for you... all I can do is tell you what helped me.

The reason that I am posting is that I found something useful as "saliva" (I still don't make any).  I found I could chew and swallow a lot of food if I used... ready?... thinned-down Cream of Wheat as saliva.  I mean I would take a bite of something (egg at first, later pork loin, and later still steak) and chew and chew and chew on it and when it was obviously not going to chew-up and swallow, I'd put just a little bit of Cream of Wheat in my mouth and continue to chew and eventually I could get it swallowed.  I ate pork ribs over the weekend and used the Cream of Wheat trick to get them chewed-up and swallowed.  Now I really don't think about it.  If it won't chew, I throw Cream of Wheat on it and it'll chew up.

I still have no taste to speak-of, so the Cream of Wheat doesn't taste like anything and neither does whatever I'm chewing so it isn't gross.   But it would be MUCH harder to eat using only sips of water (for me; everyone's different I suspect).  I found the Cream of Wheat trick looking for something / anything that would help me swallow "real" food and we just happened to have some.

I really appreciate Ensure and still drink it, but doing nothing but that for several months made me desperate for food.

Tonight (six months out) I had steak, asparagus, mac and cheese, cooked carrots, brocolli, 1/4 of a biscuit and... Cream of Wheat ... for dinner.  I couldn't have gotten much of it chewed and swallowed without my trusty Cream of Wheat.

I never got a PEG.  I lost about 15% of my body weight during treatment. 

I completely agree about medium rare steak.  Any more done and it is inedible.  Leftovers from the refigerator?  Too dry.  Can't chew it and swallow it especially if it is microwaved (ok, I can and have, but it takes WORK to chew that up).  Strangely, bacon... I can get bacon down but not patty sausage.   I had to attend a funeral out of town last week and had no choice but to find food "out."  IHOP - link sausage (greese) and pancakes soaked with butter and syrup, and scrambled eggs, and even a little bit of ham (I had a sampler so I could find something on the plate I could eat) -- BUT -- I had to chase that with a lot of water and decaf full of cream because I did not have my beloved Cream of Wheat.

I don't know how it will be for you.  Your journey is yours.  I just find that the more real food I eat the more I am able to eatmore real food.  I even managed Chick-Fil-A nuggets when I really did not have a choice (but I cannot do more than one or two french fries... they get stuck - potato is difficult; starches are difficult).

Try some thin Cream of Wheat.  Oatmeal is not the same.

Bret

To anyone freshly out of treatments who may be reading this:  Hang in there!  Just when you think it will never get any better, it gets better.  I am still hoping for the day I can taste something again.  (I am at the "protein tastes like cracked pepper, everything else tastes like cardboard, except for things like a 3 Muskateers bar I tried to eat just for the calories - THAT tasted actively bad.)

 

 

Dennis from Kansas

Easy to say hard to do

I said i was going to start eating,Well it was easy for me to say but hard to do.I did manage to eat a little oat meal and washed it down with milk.Last night we went to a bafee and I found a few soft things i could swallow.I really had to force myself as I was not hungry at all.I did not eat enough to keep a bird alive so when i got home i used the peg tube.Im going to keep trying.Thanks for all the input,it is greatly appreciated.           Dennis

Dennis from Kansas

MMDowns said:

Hi Dennis from Kansas

I am from Missouri.  If you do not mind me asking where in Kansas? My husband had his treatments at KU Cancer center.  He is 6 weeeks post treatment and still has his PEG.  Eating is a very frustrating chore for him.  He can swallow but the food does not taste good and he gets so frustrated by that.  His dr. told him they wouldn't remove the PEG until he can eat solids food for at least a week. I hope by the end of summer he can get to that.  It's all one long, slow process.  

treatment

I have been told KU is the best place in Kansas.I had my treatment in Salina KS

dygit

Dennis from Kansas said:

Easy to say hard to do

I said i was going to start eating,Well it was easy for me to say but hard to do.I did manage to eat a little oat meal and washed it down with milk.Last night we went to a bafee and I found a few soft things i could swallow.I really had to force myself as I was not hungry at all.I did not eat enough to keep a bird alive so when i got home i used the peg tube.Im going to keep trying.Thanks for all the input,it is greatly appreciated.           Dennis

Smoothies

Calories are important  - you have to be careful not to lose too much weight. I highly recommend smoothies with whey protein or veggie protein. Costco should have both. Mix with soy milk, bananas, strawberries, peanut butter, etc. Chase it with water to help take away any flavours that taste funny. Also, Costco sells a product called Livfit Superfood blend - has protein. Mix with water and chug it down. 

 

mapdan

Al the same but diiferent??

Dennis, I am from a small town in Central South Dakota and am 7 months past the "usual" 35 radiation treatemnts for Tonsil cancer as well. I had my feeding tube removed 1month ago as I did what most here have done. Forced myself to eat what I could to gain some weight. I lost 50 lbs but only weighed 195 going in. I do not have saliva or any taste but will try some of the tricks some of these fine folks are sharing. One thing you will learn is that we all spent time in our own Hell and are here today dealing with these after effects. But everyone has great suggestions and ideas. Listen and try them. I still struggle with any real food. My main food is I start with a can of cream of Chicken or Cream of anything soup, add string beans or carrots, velvetta cheese, butter, milk and you have a 500 calorie can of soup!!! Drink a chocolate milk with it and there you have 750 calories for lunch. Of course at this rate the heart hospital will be my next stop. But I am gaining by trying different things so stay strong and listen to folks here Dennis. Best of luck to ya!!!

Dennis from Kansas

mapdan said:

Al the same but diiferent??

Dennis, I am from a small town in Central South Dakota and am 7 months past the "usual" 35 radiation treatemnts for Tonsil cancer as well. I had my feeding tube removed 1month ago as I did what most here have done. Forced myself to eat what I could to gain some weight. I lost 50 lbs but only weighed 195 going in. I do not have saliva or any taste but will try some of the tricks some of these fine folks are sharing. One thing you will learn is that we all spent time in our own Hell and are here today dealing with these after effects. But everyone has great suggestions and ideas. Listen and try them. I still struggle with any real food. My main food is I start with a can of cream of Chicken or Cream of anything soup, add string beans or carrots, velvetta cheese, butter, milk and you have a 500 calorie can of soup!!! Drink a chocolate milk with it and there you have 750 calories for lunch. Of course at this rate the heart hospital will be my next stop. But I am gaining by trying different things so stay strong and listen to folks here Dennis. Best of luck to ya!!!

Thanks Mapdan

Im doing the best I can to do the things that all the good people on here have suggested,and told me what worked for them.You mentioned you were from South Dakota.I have went to STURGIS every year for the last 35 years,scattered my wifes ashes through the hills on 385.Its very butifull country.,anyway thanks for shareing what helps you ,maybe me too.        Dennis

Womanatpeace

Bobby_Lee said:

It took me about a year and a

It took me about a year and a half to get about 80 percent of my taste back.I had the feeding tube in for around 6 months and lost over 100 pounds. I was severely overweight to begin with so the weight loss just brought me down to around normal weight. I found that crushed Ice helped me alot as well as spicy food and strong stuff like garlic and spicy mustard. Mild hot sauce was just about the strongest flavor I could taste. Drink ensure even if you dont like it,force it in you, the strawberry wasnt too bad.

 

Good thing you had the extra

Good thing you had the extra mass. When it comes to cancer, you can never be too rich or too fat.