Suggestions please

I lost 35lbs tring to drink orally that they finally put me on a feeding tube.. I stableized after that

Hello Richard, You say you had 13 EGD procedures.

They are defined as--a diagnosis procedure so I assume you mean you had 13 dilations that is usually what is done to try to expand the throat, especially in H&N patients, but there is a number of people in the general population that have swallowing and need to get dilations every several months or so.

I assume you are getting these from a gastroenterologist, what is his diagnosis of your situation?

Have you had any improvement at all?

At this point, I would ask the doctor if there is any possibility of improvement, will more procedures help. If he thinks so try to get him to give you a time frame on improvement. If not you know where you stand. It may not get better which has happened to a number of people on here. I have had 4 dilations myself and I did get some minor improvement but they can only stretch your throat a little at a time and can only go so far or they risk tearing it and that is more trouble. Also, radiation makes our skin and esophagus stiffer or I have found the best way to describe it like old leather. New leather is flexible, old leather is not so much so.

You could get a second opinion just to be sure, it wouldn't hurt.

Have you seen your ENT also?

Do you still have the PEG tube? If so you should be able to get enough in there to stop weight loss and gain weight.

I know the goal is to swallow and eat, it is for all of us.

I will post weight gain recipes below, a list I have compiled over time, I hope it may be of help to you.

Wishing You The Best

Take Care, God Bless-Russ

Weight Gain Recipes

The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain food, I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.

Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.

Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--

Deb,

So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding

3/4 cup half & half cream

1/2 cup of water

1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!

Karen

These Recipes and Tips Are From Debbiel0 on CSN H&N Section

And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--

• Coffee cream ( 18%) 1 cup 480 calories
• Coconut milk 1/3 cup 150 calories
• Greek style yogurt 1 cup 270 cal
• 2 tbsp Ground Flax seed 100 cal
• 3 tbsp Hemp Hearts 170 cal
• 1 tsp nut butter 100 cal
• 1 tsp honey 100 cal
• banana 80 cal.

I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.

Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)

Use honey as much as you can in tea or coffee, or just in warm water.

I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.

Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.

I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!

Split pea soup and baked beans with honey are great for calories..

The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)

Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.

I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.

Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!

Also Here Are A Few More Postings For Weight Gain From The Forum

ByeByeCancer says:

Benecalorie

I wanted to comment on what I used for my husband when he was going through all of this (6 years ago). He had a tough time swallowing food but he, like your husband, wanted to try and keep eating on his own. So, I found a product called Benecalorie on Amazon. It is a 1.5 oz container of liquid that has 330 calories and 7 grams of protein. I would buy the 24-pack and add them to his smoothies, Boost drinks, and there was a time or two when he just drank the benecalorie by itself in one swallow. "Easy" calories in one gulp.

Here is a link to the Benecalorie on Amazon. https://amzn.to/3PC75Y6

~Sandra

Flyinhigh says:

High calorie

I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).

Grandmax4 says:

calorie

I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious

Drivingdaisy says:

Drinks

Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.

Suzj says:

if you want to mix it up..

If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories

Here's my radiologist's recipe. You can change the flavors by finding a substitute for peanut butter, using a different fruit, or a flavored yogurt. These are mixed by my better half in a Vitamix machine.

1 cup ice cream

1 cup greek (or any full-fat) yogurt

Pack of Carnation instant breakfast

1/3 cup peanut butter

1 banana

Milk to thin to the right consistency

In Closing:

I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.

Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.

Be patient and Eat, Eat, Eat.

I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ

Crimson I read your Bio.

I was thinking the feeding tube was recent.

You are a long-time member congrats.

You see you researched your cancer pretty well but the outcome you got was not as good as others thus the problems you deal with today.

I see treatment was hard on you as with many on here. We never know how we will come through treatment and what we will have to deal with down the road till it happens.

At the time we just want the cancer out and these days it is possible to many times eradicate cancer in someone but there is only so much control they have over the after-effects of treatment.

Unfortunately, as we get older we have some old age effects kicking in and adding to it, and things like radiation fibrosis are known to get worse with age.

I am sorry you are dealing with so many adverse effects but that is where you are at and you have to make the best of it and I think you are but would like to have improvement, I know how you feel.

You know what you can get down so stick with I but don't be afraid to carefully experiment with something new. As far as meds you said pills would get stuck. I have the same situation and take my pills ground up and in applesauce. I have a pill grinder that makes them into dust that is ok to use in a feeding tube. Equadose Pill Grinder.

And my second favorite is the MaxGring pill crusher both do a great job and grind your pills from the top down not all the pills on the bottom mixed together they don't grind up as well or as easily.

Just do the best you can and stay as active as possible and get as many calories in as you can and at least maintain your weight. It's not easy sometimes and can be a little depressing but then I remember how God provided the excellent medical care I received and he Blesses me each day I get up with another day to do what I need to do in my life and help others as I can. We are all still here for a reason, a purpose to fulfill, so stay strong, stay positive, and forward we go each day.

One of our members on here not with us anymore had a saying. And she had real problems but always stayed so positive, I don't know how, but she was strong. Well her saying was--

Crystal (LitlcjDoll) on CSN

"No matter how you feel, Get Up, Dress Up, Show Up, and never give up."

I hope something I said helps and I am Wishing You The Best.

Take Care, God Bless-Russ

And remember our motto here-NEGU (Never Ever Give Up)

I used olive oil (as suggested here at CSN) in my protien shakes as one tablespoon of olive oil contains 120 calories, kinda of a bang for the buck thing. Plus it's very good for you. I'd also second the carbogain suggestion.