What did you eat during treatments?

It must seem odd that I'm asking this question, since I went through H&N treatments with the other folks here. My experience wasn't quite the usual one though--I had a PEG tube from the start, and beyond swallowing water mostly relied on it during treatments because narcotics caused my stomach to largely shut down. So I never really went through the "I can eat this but not that" process, or if I did, I don't remember it--my last 3 weeks of treatment and 2 weeks post-treatment were all about trying to find ways to keep down PEG feedings.

I'm having increasing esophagitis from the radiation. It basically feels like there is a patch of my esophagus that burns, and in the center of it a painful "knot" the food hits as it goes by. It's also very sensitive to heat or cold--food and drink needs to be around room temperature unless it's something that slides down like jello. My radiation oncologist prescribed a low dose, quick release oxycodone along with magic mouthwash. I generally take the oxycodone 30 minutes before eating and then the magic mouthwash right before.

I get that any non-soft food would hurt, and I even get that the defiinition of "soft" is diminishing. Tonight, for example, may have been my last attempt at a sandwich on soft bread. What seems weird is that there are lots of soft, bland foods that hurt like the dickens: meatloaf, mashed potatoes, some soups, even soft scrambled eggs... It seems like acid, grease, and salt also hurt, even in otherwise bland, soft foods.

Are those the same kind of "rules" for what worked and didn't for H&N throat pain? If so, can you recommend some foods that worked? I remember folks recommending canned peaches and pears?

Frannie recommended Unjury protein and I ordered some, which should give me lots of liquids (and variety)--thanks, Frannie! Any other suggestions for something not sweet, since I don't have much of a sweet tooth and drinking a sweet shake 3X a day is challenging for me?

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    I've been trying to take

    myself back to when I was getting radiation.  After rads I only used my tube because of the 5FU....but didn't use my tube at all during rads.  I couldn't eat mashed potatoes, but could eat potato soup because the pieces of potato were small...also I chewed everything up well, and washed it down with water.  Another favorite was cheese and califlower soup....Cream of rice cereal...I added a lot of milk to make it soupy.  Also soft boiled eggs.  Don't forget avacado....it can be mashed and mixed into a smoothie of any flavor.  I do remember drinking 1/2 gallon of milk a day.

    My thoughts on the Unjury protein  powder was that because a person can get the unflavored, it can be added to anything to up the protein....be it a soup, or cereal....or even plain milk. 

    I used a lot of L-Gluatamine powder mixed with water....it's supposed to help heal rad burns in the mucous membranes.  It's an amino acid...and was sold right in my Onc's office, but can be found at the health food store.

    I'll keep trying to remember what else I ate....food was pretty limited, I'd think it'd be easier to remember.

    p

     

  • hwt
    hwt Member Posts: 2,328 Member

    I've been trying to take

    myself back to when I was getting radiation.  After rads I only used my tube because of the 5FU....but didn't use my tube at all during rads.  I couldn't eat mashed potatoes, but could eat potato soup because the pieces of potato were small...also I chewed everything up well, and washed it down with water.  Another favorite was cheese and califlower soup....Cream of rice cereal...I added a lot of milk to make it soupy.  Also soft boiled eggs.  Don't forget avacado....it can be mashed and mixed into a smoothie of any flavor.  I do remember drinking 1/2 gallon of milk a day.

    My thoughts on the Unjury protein  powder was that because a person can get the unflavored, it can be added to anything to up the protein....be it a soup, or cereal....or even plain milk. 

    I used a lot of L-Gluatamine powder mixed with water....it's supposed to help heal rad burns in the mucous membranes.  It's an amino acid...and was sold right in my Onc's office, but can be found at the health food store.

    I'll keep trying to remember what else I ate....food was pretty limited, I'd think it'd be easier to remember.

    p

     

    Crab legs and butter

    Casino nearby, never missed an all you can eat crab leg night. Chocolate milk, eggs. mashed potatoes and gravy had to be just right texture. All trial and error and what works one day may not work the next. Bob Evans Mac and Cheese no other brand worked. Lived on Denney's chocolate chip pancakes with plenty of syrup. 

  • Flyfisherman
    Flyfisherman Member Posts: 23
    Hi Laralyn.  Sorry you are

    Hi Laralyn.  Sorry you are having issues.  When I was doing chemo and radiation in May and June, I ate a lot of watermelon and cantelope.  I also ate a lot of raw vegatables like cucumber and squash.  There was a long time this is about all I ate.  Even now, I am having problems eating and swallowing.  I do several Boosts a day and try to get the Boost Plus or High Protein.

    I still have problems with bread and fried foods so I normally stay away from them.  My tastes have changed as well.  Where I used to like pizza and spaghetti etc, I find the sauce is too acidic.  I also am not eating spicy foods which is another big change for me.

    Hopefully, you will find somethings that you can eat easily, but don't stop looking and trying other things.  Somethings I have found have surprised me!

    Good Luck!

  • wmc
    wmc Member Posts: 1,804
    Soft is good.......

    I never had the chemo or radiation, just surgery and had to relearn how to swallow. Bread would be hard to get down as it felt like it got stuck and I had to drink to get it down. Pudding was good as I liked the lemon, butterscotch, and jello was good to snack all day. Cream of chicken soup was the best as it had more calories than most and wes even allowed on licquid diet I had for a while. I would eat the intire can 325 cal.  four to five times a day,and then Keeblers Club crackers went down the best. Then add a few milk shakes and you get around 3000+ cal. Just try anything diced peaches are good as well. If I have anything carbonated it has to be from a 2 ltr bottle and room temp or I have problems. Kerns Peach Nector drink I can drink cold, and milk. Watch the orange juice as it could burn some.

    Bill

  • Kenny-
    Kenny- Member Posts: 98
    Blended food trials

    Hi Laryn, 

    I experimented with a lot of food. I had the luxury of family who could help me go to our nearby store and get food that I felt like testing out. I still don't have a PEG, and went through rads and chemo and by week 7 the throat was at it's worst. I'm doing adjuvant now and hope to survive without the PEG. I tested the following foods, in the following order of 'difficulty' of swallowing. I hope this helps you. 

     

    Also, I have a really powerful blended that I use to "pulverize" the food and make it very liquidy so that it's easy to go down. Here's a list of my experiments. All of them are mixed with ENSURE as a base liquid. Note that you may react different than me.

     

    Blended foods - Difficulty: High

    Banana, Avocados, Peanut butter, Sweet Potatoes, Yam, Chickpeas - I could tolerate this in the early days. But once the sores got worse, I had to stop. These fruits are way to thick and sticks to the mouth after blending so I had to go for easier foods. Further, avocados and bananas have 'latex' on them and should be the first ones to be avoided. 

     

    Blended foods - Difficulty: Medium

    Spinach (blanced), Papaya, Cantoulope, Blueberries, Cooked Crimini Mushrooms - "Softer" and less sticky type fruits and veggies. However, once the mouth sores got worse, I couldn't do this and had to mix the medium and easy ones together. It's all about the liquid thickness, had to reduce the thickness. Blueberries generate quite a lot of 'little seeds' and getting them in the sores are painful so it'll need to go with ensure.

     

    Blended foods - Difficulty: Easy

    Watermelon, Cucumber, Carrot Juice, Half boiled Pasteurized Egg (can be eaten alone) - These are probably the 'thinnest' type of liquid blends that I could use. Some of them taken along will 'sting' such as carrot juice, but if I mix carrot juice with Ensure it will be ok.

     

    Hope this helps.

  • lornal
    lornal Member Posts: 428
    foods

    I had choclate milk - and "jarred" peaches.

    Lorna

  • the_wife
    the_wife Member Posts: 184
    Eating

    Hi,

    When my husband was going through treatment he had severe mucositis and nausea. The only thing he could eat was poached eggs or chicken noodle soup. But since that soup has very little calories or nutritional value, I rarely served it. He mostly survived on those Scandishakes that the docs recommended. That and Ensure, which he hated, but it was the only way he could get nutrition. He almost begged for the tube halfway through treatment.

    Now that we're weaning off the tube, I'm experimenting with smoothies. He still hates Ensure and I have to admit, it's pretty yucky. As far as the smoothies it's hard not to make them sweet or without dairy in order to pack in the calories and protein. But have you tried cottage cheese or plain yogurt? Maybe you could make a smoothie with cottage cheese and veggies like carrots or avocados, or throw in an apple or banana, then add protein powder, flaxseed meal, peanut butter, almond butter, or ground nuts. As I recall though, bananas burned when he was going through treatment....so maybe forget the fruit for now. I have a NutriBullet and that works great for smoothies. Maybe try creamed soups with veggies and put everything in blender, then add cream, olive oil and unflavored protein powder? My husband liked my pea soup (I make it with yellow peas) and Campbell's tomato soup with cream and cheese.

    I think there are smoothie recipes on the superthread. Have you checked that out? 

    It's all just trial and error as I'm sure you've heard a bajillion times before.

    Edited to add: This is a good website that has lots of tips:

    http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Nutrition-Services.aspx#Resources

    Good luck to you!

  • Laralyn
    Laralyn Member Posts: 532
    Thanks for all the info!

    It's super helpful. I boought a selection of jarred fruits, puddings, and other items you folks mentioned to see what works and what doesn't. It's a really really frustrating experience because it's so unpredictable. For example, I bought a box of Scandishakes and am trying the first one now... and it burns! Maybe esophagitis burns are different from mucositis in terms of what you can tolrate?

    Now I'll just wait for the Oxycodone to kick in so I can finish the shake...

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Laralyn

     

    I ate by mouth during both of my radiation treatments because my Oncal doctor was very unwise about things like a PEG tube. It was very hard for me to get anything down but what my caretaker did was to make watery grits and eggs types of food. It is hard to remember back on that time because I been trying to forget that part of life. I now live with a PEG tube and wish my oncal doctor knew about them too, as it would have made life for me a little better back then.

     

    Tim

  • the_wife
    the_wife Member Posts: 184
    Scandishakes

    Keep in mind that you can put any kind of regular food in a blender, if needed.

    For supplements, I heard that Boost Compact is good to use as it has a lot of calories in only 4 oz. Also, Boost VHC (Very High Calorie) blend is in a small bottle but has a lot of calories, thus the name. Haven't tried these yet, but they're on our list. 

    Are you trying to avoid the tube? I know that my hubby simply could not have done without it. Pluses and minuses as I'm sure you're well aware. I'm glad he had it, though, and don't regret it at all. It saved both of us a lot of work and worry. 

    What are your docs recommending to eat?

  • Laralyn
    Laralyn Member Posts: 532
    the_wife said:

    Scandishakes

    Keep in mind that you can put any kind of regular food in a blender, if needed.

    For supplements, I heard that Boost Compact is good to use as it has a lot of calories in only 4 oz. Also, Boost VHC (Very High Calorie) blend is in a small bottle but has a lot of calories, thus the name. Haven't tried these yet, but they're on our list. 

    Are you trying to avoid the tube? I know that my hubby simply could not have done without it. Pluses and minuses as I'm sure you're well aware. I'm glad he had it, though, and don't regret it at all. It saved both of us a lot of work and worry. 

    What are your docs recommending to eat?

    In terms of getting a PEG tube...

    I'm almost done with treatments. In fact, my rad onc is considering eliminating the last three treatments, which would mean I'm done on Wednesday. If the symptoms persist a couple weeks at this same level, I think I can make it without a tube. Fingers crossed!

    Thanks again to everyone for the suggestions. I can force a Scandishake down once a day and that gets half the minimum I feel I need. The suggestion of Cream of Chicken Soup was spot on! I'm having some of that now and there is very little pain even though my oxycodone has mostly worn off! I'm going to try some peaches after I take my next oxycodone. :-)