Regaining appetite

kirby1 · December 2013

My husband had three chemo (cisplatin) and 35 RT to his sinus cavity and neck. Last treatment July 25th. He has a PEG tube and uses it for most of his nutrition (Ensure PLus). He will try to eat a bit in the evenings for supper, but its very little. He says he has no appetite.

Any suggestions would be helpful and appreciated.

ratface · December 2013

The road back

My best suggestion is an obvious one. Start drinking the supplement instead of using the tube. Fast easy calories and gets the mechanicals working again. Secondly I found salads to be very easy to eat because of the water content and my almost zero saliva. Be forwarned that many folks here have had the opposite effect and found them difficult. Thirdly I lived off of egg drop soup for several months before eating anything reallly solid. Can't stand the stuff now! And finally, do not eat anything with hot peppers on it. Don't ask how I know this.

Roar · December 2013

didnt have a tube but

i had almost the same exact treatment regiment. i had an unknown primary with one lymph node removed. i am sure you will get a lot of your questions answered in a few minutes as many people here have had or do have the pegs. i would suggest to begin with smoothies. at the end of my treatment i couldnt eat anything. i lived on ensure - clear broth with small pasta - i remember very soggy french toast and instant maple oatmeal went down - everything was smothered in butter. it took ne about three months to begin actually eating. tell him not to be in a rush. this recovery thing is measured in months not days. i remember last year thinking 12/10 was my last treatment and thought i would be able to eat a normal christmas eve dinner with my fammilly and friends - way wrong! be patient and everything will fall into place - he is trying to eat - that is all anyone can ask - when the time is right he will eat more and more - if he is trying that means he is fighting and as long as he fights he will survive and wear the badge of the warrior. stay possitive and make him stay possitve. you have both gotton through the battle and now must win the war - the tube will be a memory in a few months as long as he keeps trying -

CivilMatt · December 2013

Been there

Kirby1,

It all depends on his reason for not eating

For me I popped my PEG at 2 weeks post but sue to the awful feel of most foods I survived on smoothies for 7 months. Then like magic food felt ok again and away I went.

For 7 months I was always trying foods and I liked some, but the weird feel was over powering.

Most likely his reasons are different, but they can be just as real (at least to him)

Matt

kirby1 · December 2013

ratface said:
The road back
My best suggestion is an obvious one. Start drinking the supplement instead of using the tube. Fast easy calories and gets the mechanicals working again. Secondly I found salads to be very easy to eat because of the water content and my almost zero saliva. Be forwarned that many folks here have had the opposite effect and found them difficult. Thirdly I lived off of egg drop soup for several months before eating anything reallly solid. Can't stand the stuff now! And finally, do not eat anything with hot peppers on it. Don't ask how I know this.

Thank you for your reply.

Thank you for your reply. How long did it take you before you could feel hungry?

kirby1 · December 2013

Roar said:
didnt have a tube but
i had almost the same exact treatment regiment. i had an unknown primary with one lymph node removed. i am sure you will get a lot of your questions answered in a few minutes as many people here have had or do have the pegs. i would suggest to begin with smoothies. at the end of my treatment i couldnt eat anything. i lived on ensure - clear broth with small pasta - i remember very soggy french toast and instant maple oatmeal went down - everything was smothered in butter. it took ne about three months to begin actually eating. tell him not to be in a rush. this recovery thing is measured in months not days. i remember last year thinking 12/10 was my last treatment and thought i would be able to eat a normal christmas eve dinner with my fammilly and friends - way wrong! be patient and everything will fall into place - he is trying to eat - that is all anyone can ask - when the time is right he will eat more and more - if he is trying that means he is fighting and as long as he fights he will survive and wear the badge of the warrior. stay possitive and make him stay possitve. you have both gotton through the battle and now must win the war - the tube will be a memory in a few months as long as he keeps trying -

Thank you for your

Thank you for your response. We are hanging in there.

kirby1 · December 2013

CivilMatt said:
Been there

Kirby1,

It all depends on his reason for not eating

For me I popped my PEG at 2 weeks post but sue to the awful feel of most foods I survived on smoothies for 7 months. Then like magic food felt ok again and away I went.

For 7 months I was always trying foods and I liked some, but the weird feel was over powering.

Most likely his reasons are different, but they can be just as real (at least to him)

Matt

Thanks for your info.

Thanks for your info.

phrannie51 · December 2013

I was starving by the end of

treatment, but it took very little to fill me up....so appetite return to normal is also a slow process.

I agree with Debbie.....that he should start drinking his Ensure (or at least one of them per day)....start kicking in the taste buds. Also, maybe start sipping milk through out the day.....get more calories in, plus it give his swallower something to practice on. My first "good" experience with food was a Chinese Buffet....lots of sauces, and different tastes....like a little surprise party for my taste buds over and over again.

p

dlygoblue · December 2013

Kirby1,
I had the same

Kirby1,

I had the same treatment, with loss of appetite and a PEG tune. Keep him eating, even a little. Soft foods like mashed potatoes, pudding, yogurt, scrambled eggs work OK, but they're still hard to get down. As the others have stated, drinking his Ensure works too. He has to keep his throat muscles working. Have you asked your ONC for prescriptions like Marinol (sort of a legal, non-smoking marijuana substitute)? It helps a bit with creating an appetite.

DL

kirby1 · December 2013

dlygoblue said:
Kirby1,
I had the same
Kirby1,

I had the same treatment, with loss of appetite and a PEG tune. Keep him eating, even a little. Soft foods like mashed potatoes, pudding, yogurt, scrambled eggs work OK, but they're still hard to get down. As the others have stated, drinking his Ensure works too. He has to keep his throat muscles working. Have you asked your ONC for prescriptions like Marinol (sort of a legal, non-smoking marijuana substitute)? It helps a bit with creating an appetite.

DL

He will try to eat something

He will try to eat something most nights for supper. If he is overly tired he won't eat. One evening three eggs and one slice of toast. Tonight I'm fixing him sweet potatoes as he liked the ones my niece brought to Thanksgiving. He will try each evening to eat a bit, some times he gets down more than other times. He goes through a lot of apple sauce. Last month everything was either too salty or too sweet. So his wanting sweet potatoes is an indication its improving. He did ask for salt one day also. This is a man who used to cover everything with salt (lots and lots).

The doctor gave him a RX for something to help salvia production, but he refused to get it filled. He was using Biotene, but stopped that.

I'm hoping for an appetite. That seems to be the biggest obstacle for him. At our family party yesterday, he ate a small amount of several things, ham, beans, potatoes.

I keep saying God is teaching me patience. I want him well and eating good.

Thank you and everyone for your comments. Merry Christmas.

patricke · December 2013

NUTRITION

Hey kirby, I have had a PEG tube for many, many years and for the first 5 years, I lived very well, and was very well nourished on a whole food suppliment liquid diet. The brand that I am currently using when I am away from home, is Fibersource HN, and for breakfast, I often use Boost Very High Calorie. I obtain both of these supplements from a medical supply store. You might want to check these out to see if they may provide more nutrition than the Ensure Plus.

PATRICK

fishmanpa · December 2013

Feeling "hungry"

I never really thought about when I actually had a real appetite again. I was "pegged" at the end of treatment (4-25) and with the exception of water, everything was through the tube for a month. The first "food" I ate was over Memorial Day weekend and it was one soft scrambled egg. I felt like I had been to the Chinese Buffet I was so full!

I ate everything by mouth after that. Shakes, soft foods etc., but it wsn't until November, 6 months after treatment ended where I really began to have an appetite and put weight on again. It helped that my swallowing had improved too. Prior, I would get "tired" while eating. My jaw and throat would just be too tired to eat any more. Between September and now, I've regained about 15 pounds and I'm at a weight that my doctors as well as I am comfortable with.

Patience is the only suggestion I can give you. Eating and enjoying it are key and everyone is different as to when they reach that point in recovery.

Positive thoughts

"T"

hwt · December 2013

fishmanpa said:
Feeling "hungry"
I never really thought about when I actually had a real appetite again. I was "pegged" at the end of treatment (4-25) and with the exception of water, everything was through the tube for a month. The first "food" I ate was over Memorial Day weekend and it was one soft scrambled egg. I felt like I had been to the Chinese Buffet I was so full!

I ate everything by mouth after that. Shakes, soft foods etc., but it wsn't until November, 6 months after treatment ended where I really began to have an appetite and put weight on again. It helped that my swallowing had improved too. Prior, I would get "tired" while eating. My jaw and throat would just be too tired to eat any more. Between September and now, I've regained about 15 pounds and I'm at a weight that my doctors as well as I am comfortable with.

Patience is the only suggestion I can give you. Eating and enjoying it are key and everyone is different as to when they reach that point in recovery.

Positive thoughts

"T"

Hungry

Wish I had a nickel for everything I thought I wanted or thought I could eat post tx. Unfortunately, my husband ended up eating my share of most. I now get tired of eating long before I get full. No swallowing difficulties. I think it was Phrannie that said "I used to live to eat and now I eat to live". Early on I did well with eggs, milk, pancakes, soup, and the like. Pancakes with extra syrup are still my "go to" food.

kirby1 · December 2013

fishmanpa said:
Feeling "hungry"
I never really thought about when I actually had a real appetite again. I was "pegged" at the end of treatment (4-25) and with the exception of water, everything was through the tube for a month. The first "food" I ate was over Memorial Day weekend and it was one soft scrambled egg. I felt like I had been to the Chinese Buffet I was so full!

I ate everything by mouth after that. Shakes, soft foods etc., but it wsn't until November, 6 months after treatment ended where I really began to have an appetite and put weight on again. It helped that my swallowing had improved too. Prior, I would get "tired" while eating. My jaw and throat would just be too tired to eat any more. Between September and now, I've regained about 15 pounds and I'm at a weight that my doctors as well as I am comfortable with.

Patience is the only suggestion I can give you. Eating and enjoying it are key and everyone is different as to when they reach that point in recovery.

Positive thoughts

"T"

Thank you for your input.

Thank you for your input. Six months would be end of January for Steve. He ate a little bit of meatloaf, three small sweet potatoes, and three peach slices for supper. I appreciate everyone's input. Merry Christmas.

KB56 · December 2013

at first I thought I would never have an appetite again! It was months before I actually had a hunger craving and my throat was so sore I dreaded eating anything . Your husband needs to force himself to eat, not because he's hungry but more because it's time to eat. Eat small portions 5-6 times a day and eventually he should start to feel hungry again. I had a Peg tube as well and my last radiation treatment was June 11th and I wanted the tube out really bad! I knew I could only get it out when I could sustain, and hopefully gain, weight without using it so forcing myself to set was the answer, and I had it removed on July 5th His throat may still be pretty sore so it may be painful to eat so try and get as much protein as he can with softer foods (scrambled eggs, yogurt, fish, baked sweet potatoe w lots of butter/cheese, etc).

My only issue now is that when I do get hungry I have to eat almost immediately or I feel a little nauseaous and get cranky. It's good having my appetite back though.

Good luck and if he will force himself to eat small portions several times a day that will help.

Keith

catfish_58 · December 2013

kirby1 said:
He will try to eat something
He will try to eat something most nights for supper. If he is overly tired he won't eat. One evening three eggs and one slice of toast. Tonight I'm fixing him sweet potatoes as he liked the ones my niece brought to Thanksgiving. He will try each evening to eat a bit, some times he gets down more than other times. He goes through a lot of apple sauce. Last month everything was either too salty or too sweet. So his wanting sweet potatoes is an indication its improving. He did ask for salt one day also. This is a man who used to cover everything with salt (lots and lots).

The doctor gave him a RX for something to help salvia production, but he refused to get it filled. He was using Biotene, but stopped that.

I'm hoping for an appetite. That seems to be the biggest obstacle for him. At our family party yesterday, he ate a small amount of several things, ham, beans, potatoes.

I keep saying God is teaching me patience. I want him well and eating good.

Thank you and everyone for your comments. Merry Christmas.

Saliva RX

My dentist had given me a prescription for toothpaste made for dry mouth and also a prescription for Saligen too.both together works greater than expected if i forget to take the Saligen I'd start to feel it after about 6 hours i would get dry mouth real bad,Plus everyone does differently when it comes to saliva.time will tell healing is slow I'm over 8 mos. post and yesterday finally ate a medium size pizza pan style and had 1 glass of tea,Been wanting that since april.But all in all swallowing is the main thing,don't need to forget how to do that,But even just a small amount will keep those muscles in the throat working.Good Luck it'll get better soon

kirby1 · December 2013

Again, my thanks for all of

Again, my thanks for all of you sharing and providing suggestions. I am passing these on to Steve, and hopefully some of them will sink in. Trying gravy over biscuits and applesauce tonight. He eats applesauce with almost everything, it helps to get it all down.

Regaining appetite

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