Suggestions on eating

Kazsmiles74
Kazsmiles74 Member Posts: 25 Member
edited July 2023 in Head and Neck Cancer #1

Can anyone help me with some tolerable food choices that worked for you? My husband is on day 13 of 33 radiation and 3 of 7 for chemo. His taste buds are pretty much gone or make food taste horrible to the point of gagging. He is drinking High Calorie Ensure, and scrambled eggs are kinda okay. However, he really would like to eat to keep his swallowing and throat working throughout. Sweet things are really upsetting his stomach. He says his throat pain is about a 4 out of 10, I think it’s probably higher and he is trying to push through it. Any suggestions/tips is very welcomed.

Comments

  • BertChen
    BertChen Member Posts: 20 Member
    edited June 2023 #2

    Ya, that's part of the journey.

    I would, and still do, use the magic Mouthwash before eating. It does help.

    For foods, anything pasta started feeling like chewing paste. But for me, Ramen noodles in veggie broth became and still are my staple. You can mix an unflavored protein powder into the broth to up the calories and protein.

    Cereal that will get soggy in milk will help in getting it past the throat. Again, you can mix a protein powder into the milk to up the calories and protein before adding it to the Cereal.

    I also found that watermelon was a good source for me. Towards the last couple weeks of treatment I couldn't taste the flavor anymore, but at least it was just a null as opposed to not appealing, so I was able to use that as a source of fiber and hydration.

    Avoid acidic foods! It will burn the mouth sores, even through the magic Mouthwash! So red sauce, citrus, foods with citric acid in the ingredients... (this is assuming he's getting RADs to the mouth area; mine was directed at the tonsils and lymph nodes, both sides)

    I can't say this enough though, use the magic Mouthwash before eating to help keeping eating throughout the journey. I made it through without a feeding tube, hopefully he can too...

    After a while, if he doesn't feel like eating, it may be because his stomach seems queasy. I started taking the antinausea meds in the morning and at dinner time to help through this...

  • Kazsmiles74
    Kazsmiles74 Member Posts: 25 Member

    Thank you so much! He is really hoping to avoid the feeding tube, so I will use your suggestions. Picking up the magic mouthwash today. Again, a HUGE thank you.

  • BertChen
    BertChen Member Posts: 20 Member
    edited June 2023 #4

    Here are some things my Nutritionist recommended (I am vegan); starting now will help slow roll the impending weight loss and nutrient deficiency from not getting his 'normal' diet:


    Soylent Meal Replacement = 400 cal, https://soylent.com/products/soylent-drink-strawberry#shopify-section-pdp-nutritional-facts

    * I know you mentioned this is the one you've been doing- I think it's a great option, since you seem to tolerate it well & provides a lot of calories!


    UPDATE: I wound up choking on the below vitamin; guess my throat closed a little tighter now... here is a liquid form multivitamin suggestion: Men's 40+ Multivitamin Liposomal with Hormonal Support by MaryRuth's | Enhanced Absorption | Immune Support, Reproductive Health, Increase Energy Supplement for Men | Sugar Free | 15.22oz https://a.co/d/1rtQ5xG


    This pill is a bit large, I wound up choking on it: https://www.amazon.com/Vegan-Vitality-Multivitamins/dp/B07MK5BBGN/ref=sr_1_4?crid=15I2O4EBS7HBG&keywords=vegan+multivitamin&qid=1687448963&rdc=1&s=gift-cards&sprefix=vegan+multivitamen%2Cgift-cards%2C79&sr=1-4


    Keep Fighting!

  • MarineE5
    MarineE5 Member Posts: 1,034 Member

    Hello Kazsmiles,

    BertChen presented a nice list of suggestions to help your husband with his and your journey. One thing I would like to suggest is, I ate all foods and liquids at room temperature. It seemed to help not aggregate my throat and stomach. I ate scrambled eggs also, but I used Sugar Free Syrup (Log Cabin) is good. It helped the eggs slide down my throat easier especially since I couldn't really taste the eggs anyway.

    I also used the Baking Soda and Salt Solution suggested by the Nurses. I didn't know about "Magic Mouthwash" until I joined this site. 1 Teaspoon of each in 1 Quart of room temperature water. I would rinse and gargle as often as I felt I needed to use it. As I moved into the later weeks of treatments I increased the amount of each to 1 Tablespoon in 1 Quart of water. As BertChen mentioned, just prior to eating helped a bit.

    My Oncologist also prescribed pain medicine for me, it was called Nuerontin and it helped with nerve discomfort. I also made myself Milkshakes with Ice Cream, banana, milk, sometimes I would throw in some yogurt. I could taste the banana so that was nice.

    My Best to You, Your Husband and Everyone Here

  • BertChen
    BertChen Member Posts: 20 Member

    @Kazsmiles74 @MarineE5

    I call that Goldilocksing 👱‍♀️ Not too hot, not too cold! 🐻

    I had to start Goldilocksing in the early weeks. It started with ice water that burned for some reason. Shortly thereafter everything had to be Just Right! 😆👱‍♀️🐻🤪

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    Kaz, he will just have to try anything and everything with the easiest to swallow and the highest calories possible. If his taste buds are pretty much gone now he soon will get to the point where we all have been, no taste at all feels like eating cardboard. Secondly keeping your swallowing is not dependent on eating. Have your care team set him up with a speech therapist which he should have to evaluate him now and all through this process and they will give him swallowing exercises that will maintain his swallowing ability.


    If I am correct he has 20 more treatments to go and if he is having difficulty now he may not make it without getting a feeding tube. Also, keep in mind once radiation treatments are over we are still cookin as they say for about 2 weeks after they stop so the issues he is facing will extend a little beyond the actual treatment.

    Keep working closely with his care team and the speech therapist and if he needs one they will know. Well, in fact, you will know if he is not eating or eating enough and losing weight and dehydrating. There is no shame in needing a feeding tube temporarily to get you through this and it makes a rough ride like this much easier.

    I just posted a feeding tube response in another posting earlier and I am going to repost if for consideration here.

    Wishing You the Best

    Take care, God Bless-Russ


    There was a comment on another posting that I felt compelled to answer.

    The statement was made "The feeding tube is better than starving, but the exercises can keep us eating through the treatment so why not?

    My answer was---I agree with you "The feeding tube is better than starving, but the exercises can keep us eating through the treatment so why not?

    Well, why not, because there were cases like mine where my throat and the tissue surrounding it swelled from the radiation and closed my throat off and I could get no food or liquid through of any sort no matter how many exercises I did or how hard I tried to swallow. And I was working with an assigned speech therapist and she had given me exercises to do and I was doing them multiple times a day. She also informed me to do the exercises each day and if I was using the feeding tube, not to stop the swallowing exercises because we can forget how to swallow and need to relearn it. I did the exercises plenty each day because I didn't want to have to relearn how to swallow. Who woulda thought that that would happen I always thought swallowing was a natural reaction like breathing but apparently not. I probably couldn't get anything through for several months and would have died without it. Also while I could still swallow food it got to be a tortuous painful ordeal and suffering trying to get these calories through sometimes like the proverbial swallowing razor blades as some have described it on here and you start to look at eating as torture. I was glad I had the tube ahead of time because, by the time I needed it, I was not feeling like going in for a procedure I had enough to do with the treatment. And when I could finally start getting some food and liquid through again, just like she said, I could still swallow because of my diligence in doing the exercises she assigned me. And when I could maintain my weight for 2 weeks the feeding tube is easily removed, just pulled out with a minimum of pain and the hole in your stomach closes up by itself in 2 or 3 days.

    And there are some folks on here that started out with all good intentions that no matter what happened with their throat or how sore it got they had in their mind that they would by their own strong will be able to push on through and get the calories in no matter what. Well, you can't push calories through a restricted closed esophagus no matter how hard you swallow. It's physically impossible.

    Some succeded without much trouble. Some succeded but suffered greatly but they still avoided the tube. And there were some that lost weight, got dehydrated, and were admitted for an emergency hospital stay and a feeding tube insertion to save their life.

    I am so glad you made it through without a feeding tube I wish we all could. I am hoping it works out for rpclark also.

    I just wanted to point out to anyone reading this that feeding tube consideration during this brutal treatment is a matter that should not be taken lightly and should be given serious consideration.

    Wishing You the Best

    Take care, God Bless-Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    Also In the meantime here are some suggestions and recipes to try.

    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 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


    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



    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



  • Kazsmiles74
    Kazsmiles74 Member Posts: 25 Member
  • Kazsmiles74
    Kazsmiles74 Member Posts: 25 Member

    Appreciate the reply. We will give your suggestions a try.

  • BertChen
    BertChen Member Posts: 20 Member

    UPDATE: I wound up choking on the previously mentioned vitamin; guess my throat closed a little tighter now...

    This is a liquid form multivitamin suggestion:

    Men's 40+ Multivitamin Liposomal with Hormonal Support by MaryRuth's | Enhanced Absorption | Immune Support, Reproductive Health, Increase Energy Supplement for Men | Sugar Free | 15.22oz

    https://a.co/d/1rtQ5xG

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    I am not sure what kind of a pill you were taking when you had a choking problem but I too have gotten pills stuck and sometimes could not get them unstuck and had to wait for them to dissolve enough to move them either to finally swallow or cough back out.

    That was in my early days.

    I have learned if you ever get to a point you have difficulty swallowing pills in general or it is due to treatment and a temporary situation you can use a pill grinder and grind them into a powder or ground-up mixture and mix them with applesauce and it makes it easy to swallow that way. If a capsule then just open it and mix the insides of it with the applesauce and swallow easily. If you are using a feeding tube grind the pills up or open the capsules and mix with water and put that into your FT Syringe and put it in your tube.

    There are a lot of pill grinders/crushers out there above all I recommend ones that grind from the top down where your pill is elevated higher and is ground up and the ground pill falls in a catch cup underneath these work much nicer than the other style pill grinders where you put the pills in the bottom and that is the catch cup also and you just keep grinding the contents all laying in the bottom. I think these don't give you as good of a fine grinding as the top-down ones but they do work.

    Example of a base grinder that grinds on the bottom and everything is in the bottom--


    Examples of top-down grinders--Equadose mortar & pestle style--Top down

    MAXGRIND Top Down--


    MAXGRIND APART--

    Top-down concept--

    I have tried a number of them and there are more out there these are just a few of the possibilities.

    They all work but at this point, I prefer the equal dose because I think it gives you a finer grind and is very easy to clean.

    I hope this helps someone.

    Take Care, God Bless-Russ

  • ByeByeCancer
    ByeByeCancer Member Posts: 54 Member

    Hi, there are a lot of great suggestions here!

    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

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    Thank you Sandra for making us aware of this product, it is a great idea and add on and a lot of calories just consumed by itself. I will add it to my weight gain and calorie list of products and recipes I post at times.

    Take Care, God Bless-Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member


  • TonyB2023
    TonyB2023 Member Posts: 20 Member

    Good comments all!

    I would recommend that everyone that is going to have the 35 cycles of radiotherapy directly on their throat have a feeding tube put in before treatment. You will most probably need it toward the end of treatment and for weeks after. I, like some of you mentioned, couldn't hardly swallow water safely and relied completely on the feeding tube for nutrition, calories and hydration. I can't imagine having to have a PEG tube put in later, when you really need it.

    Also, as has been mentioned, get with a speech pathologist a couple weeks before treatment begins and learn the swallowing exercises. Do them religiously throughout treatment. I ended up with an epiglottis that never fully closes, so now, 2 1/2 years since treatment, I still have to drink without "sipping", take smallish bites of food and be careful swallowing. And always have a glass of water ready to help wash it down.

    To this day, I still drink two Walmart Equate+ nutrition drinks (700 cals) for breakfast and one for a snack during the day, besides eating a normal lunch and dinner. I like the simplicity.

    Stay positive!

    Tony