Eating during radiation treatment

Mattie65

Hello everybody. I'm not from the US but I've been lurking here for a while now, searching for answers and information and I found this forum to be quite a useful place, so I hope you don't mind if a stranger joins this board.

I have a few, quite urgent questions about nutrition. I've had neck dissection in mid-september, followed by radiation treatment, which started 3 weeks ago.

Now, since last week, my sense of taste is in a total mess. I have a constant bittersweet taste in my tongue area that seems to alter any other taste, and as a result, everything tastes bad. I manage to eat small portions of some food, until I can't stand it any more. I maintain good oral hygiene, as advised. Also tried a salt/soda mix. Nothing worked satisfyingly.

Does anyone have any tips for me about how to overcome the disgust that builds up while attempting to eat?

The Cincinnati Kid

Hello Mattie,

Hello Mattie,

I haven't yet started my radiation but as I was researching upcoming effects I came acrooss this for what its worth. Maybe theres something in this list you haven't yet seen. Good luck.

• Many foods, including meat and poultry, taste better if they are served cold or at room temperature instead of hot.
• Eggs often taste good when the taste for meat is lost.
• Fresh fruits and vegetables, pasta dishes, and milk products are often well tolerated.
• Fruit sorbet, sherbet, and fruit smoothies usually taste good.
• Tart foods with more distinctive tastes may be added to foods to help cover the metallic taste. Try adding orange, lime, or lemon juice or orange marmalade to fruit salad, salsa, sauces for pork or chicken, stir-fried or cooked vegetables, and oil-based salad dressing. Add vinegar, lemon juice, or pickles to creamy dressings for potato, macaroni, tuna, egg, or cole slaw salads. Lemon juice added to chicken broth, broth-based soup, gazpacho, or guacamole enhances the flavor.
• Peel carrots before eating or cooking. This eliminates the bitterness that is quite noticeable to some people and makes them avoid eating carrots altogether. Try the "baby" carrots available in the produce section that are already peeled and cut.
• If you do not have sores in your mouth, try using horseradish or any of the flavored mustards, such as Dijon, honey, sweet and sour, etc., to add flavor to your sandwiches and other foods.
• Fruit juice popsicles often taste good. Make your own popsicles with your favorite juice flavors.
• Rinse your mouth with fruit juice, wine, tea, ginger ale, club soda, or salted water before eating. This will help clear your taste buds.
• You can sometime get rid of the strange taste in your mouth by eating foods that leave their own taste in your mouth, such as fresh fruit or hard candy. Suck on lemon drops or mints or chew gum after eating to get rid of the undesirable tastes that linger.
• Try marinating meat or poultry in fruit juice, wine, vinegar-based salad dressing, or other sauces for more taste.
• Experiment with spices and herbs. Some people find they like spicier foods at this time.
• Experiment with new foods. Try foods or cuisines you may not have tried before.
• If you are not neutropenic, eat out in restaurants that feature buffets. You can try small amounts of a variety of food without having to prepare it yourself.
• Check with your dentist to rule out dental problems causing bad taste. Care for your mouth and teeth to prevent dental caries.

SuzJ

Food

I lived on pre treatment frozen home made chicken /veg soup, altho, it didn't taste of much, Boost, strawberry flavor (Ensure was UGH, but thats a personal thing)

Sorry Kid, but stay away from lemon. Lemon (citrs) is acidic - even apple sauce - it contains ascorbic acid as a preservative. it HURTS!

Your throat is going to be - as I describe it - "the throat of a thousand papercuts" stay bland, push calories, boost/ice cream/carnation instant breakfast (900 calories)

Water - lots of it. - practice "gulping" because thats what pushes it down. Taste and Smell will gradually come back..

ratface

SuzJ said:

Food

I lived on pre treatment frozen home made chicken /veg soup, altho, it didn't taste of much, Boost, strawberry flavor (Ensure was UGH, but thats a personal thing)

Sorry Kid, but stay away from lemon. Lemon (citrs) is acidic - even apple sauce - it contains ascorbic acid as a preservative. it HURTS!

Your throat is going to be - as I describe it - "the throat of a thousand papercuts" stay bland, push calories, boost/ice cream/carnation instant breakfast (900 calories)

Water - lots of it. - practice "gulping" because thats what pushes it down. Taste and Smell will gradually come back..

its all about calories

welcome to the Board, dosent matter where you live. The biggest killer of cancer patients in general is malnutrition. So it dosen't matter what it taste like, nor that you actually eat it. I had great sucess drinking calories, it was just less painfull. Concentrate on calories in whatever form you can tolerate. I would not put anything in my mouth until you tried a very small portion first and were able to tolerate it. My biggest issue was not wanting to eat as everything tasted like cardboard which made drinking calories more effective, less energy spent on trying to eat the more is left for the battle. I lived on egg drop soup for some time, find what works for you and just keep eating it. 

Mattie65

The Cincinnati Kid said:

Hello Mattie,

Hello Mattie,

I haven't yet started my radiation but as I was researching upcoming effects I came acrooss this for what its worth. Maybe theres something in this list you haven't yet seen. Good luck.

• Many foods, including meat and poultry, taste better if they are served cold or at room temperature instead of hot.
• Eggs often taste good when the taste for meat is lost.
• Fresh fruits and vegetables, pasta dishes, and milk products are often well tolerated.
• Fruit sorbet, sherbet, and fruit smoothies usually taste good.
• Tart foods with more distinctive tastes may be added to foods to help cover the metallic taste. Try adding orange, lime, or lemon juice or orange marmalade to fruit salad, salsa, sauces for pork or chicken, stir-fried or cooked vegetables, and oil-based salad dressing. Add vinegar, lemon juice, or pickles to creamy dressings for potato, macaroni, tuna, egg, or cole slaw salads. Lemon juice added to chicken broth, broth-based soup, gazpacho, or guacamole enhances the flavor.
• Peel carrots before eating or cooking. This eliminates the bitterness that is quite noticeable to some people and makes them avoid eating carrots altogether. Try the "baby" carrots available in the produce section that are already peeled and cut.
• If you do not have sores in your mouth, try using horseradish or any of the flavored mustards, such as Dijon, honey, sweet and sour, etc., to add flavor to your sandwiches and other foods.
• Fruit juice popsicles often taste good. Make your own popsicles with your favorite juice flavors.
• Rinse your mouth with fruit juice, wine, tea, ginger ale, club soda, or salted water before eating. This will help clear your taste buds.
• You can sometime get rid of the strange taste in your mouth by eating foods that leave their own taste in your mouth, such as fresh fruit or hard candy. Suck on lemon drops or mints or chew gum after eating to get rid of the undesirable tastes that linger.
• Try marinating meat or poultry in fruit juice, wine, vinegar-based salad dressing, or other sauces for more taste.
• Experiment with spices and herbs. Some people find they like spicier foods at this time.
• Experiment with new foods. Try foods or cuisines you may not have tried before.
• If you are not neutropenic, eat out in restaurants that feature buffets. You can try small amounts of a variety of food without having to prepare it yourself.
• Check with your dentist to rule out dental problems causing bad taste. Care for your mouth and teeth to prevent dental caries.

Thank you. I was already

Thank you. I was already familiar with that list and I did already try a number of things from it, but it remained overall difficult. I am currently searching for interesting food aroma to add to my food, but the availability in stores is limited. Apart from that, room temperature is, indeed, the way to go. Anything too warm or cold tasted worse.

Mattie65

SuzJ said:

Food

I lived on pre treatment frozen home made chicken /veg soup, altho, it didn't taste of much, Boost, strawberry flavor (Ensure was UGH, but thats a personal thing)

Sorry Kid, but stay away from lemon. Lemon (citrs) is acidic - even apple sauce - it contains ascorbic acid as a preservative. it HURTS!

Your throat is going to be - as I describe it - "the throat of a thousand papercuts" stay bland, push calories, boost/ice cream/carnation instant breakfast (900 calories)

Water - lots of it. - practice "gulping" because thats what pushes it down. Taste and Smell will gradually come back..

Thanks for the advice. At the

Thanks for the advice. At the moment, after 13 sessions (2gy + 1.7gy), my throat is still okay when it comes to soreness. We don't have Carnation Instant Breakfast here, but I see what it is and I believe I could find some equivalent. Just the other day, after I wrote this, I found a high-protein chocolate pudding that was tolerable too. I'm going to get a bunch of these. There was also a protein curd with strawberry taste, but the texture felt very strange and sticky in my mouth, so I gave up on it pretty quickly. Gulping is okay, at the moment. No changes, really. Actually  even better than it was after surgery. I'm only getting radiated unilaterally, so the side effects are quite tolerable, except for the taste issues, right now at least.

Mattie65

ratface said:

its all about calories

welcome to the Board, dosent matter where you live. The biggest killer of cancer patients in general is malnutrition. So it dosen't matter what it taste like, nor that you actually eat it. I had great sucess drinking calories, it was just less painfull. Concentrate on calories in whatever form you can tolerate. I would not put anything in my mouth until you tried a very small portion first and were able to tolerate it. My biggest issue was not wanting to eat as everything tasted like cardboard which made drinking calories more effective, less energy spent on trying to eat the more is left for the battle. I lived on egg drop soup for some time, find what works for you and just keep eating it. 

That's the direction it's

That's the direction it's taking, right now. More and more drinking, less and less eating. I  don't know if it's a good thing, as I'm always scared to neglect some muscles, but swallowing is fine and I swallow no matter if it's solid or liquid. I actually wish some things tasted a little more like cardboard, although I suppose that the strong taste distortions indicate that my taste buds are not dead. They just feel like they're having a party and someone brought a crate of vodka. One part of them is shouting in unison, one part fell asleep all over the place, a third part is at the edge of getting sick. :-D

motorcycleguy

Mattie,

Loss of taste is an unfortunate side effect, that is very tough to handle.

However, you are MUCH better off, if you can continue to consume food by mouth. My girlfriend made smoothies, and I was able to chug them through the whole process. You can make them very nutritional!

Your sense of taste will come back, after you've finished treatment. I'm sorry I don't have better news than that.

The good news is that the radiation may get rid of your Cancer, and the side effects are minimal, compared to that!

Hang in there, it's tough and it takes time - but it gets BETTER!!

mg

BeagleDad

TORS

Good information, Mattie.  Did you go through a TORS as well?  I just got done with mine 6 days ago and am looking at low dose rads beginning in Jan.  

Don (beagledad)

Mattie65

motorcycleguy said:

Mattie,

Loss of taste is an unfortunate side effect, that is very tough to handle.

However, you are MUCH better off, if you can continue to consume food by mouth. My girlfriend made smoothies, and I was able to chug them through the whole process. You can make them very nutritional!

Your sense of taste will come back, after you've finished treatment. I'm sorry I don't have better news than that.

The good news is that the radiation may get rid of your Cancer, and the side effects are minimal, compared to that!

Hang in there, it's tough and it takes time - but it gets BETTER!!

mg

Thanks, motorcycleguy. Think

Thanks, motorcycleguy. Think I'll go for these smoothies. Just made myself some Tortellini with tomato sauce, but they just tasted like dirt, so I gave up. It's not wort getting a food aversion from forcing myself to eat any special dish.

It seems that my taste buds still sort of respond to fruits. I'm doing my best to avoid going back on the feeding tube, because I'm really happy to be rid of it. Still have some room for pounds to lose. Not too many but I'm at around 143 lb right now and the worst I've been when I was sick in 2005 were 110.

I'll hang in there.

Mattie65

BeagleDad said:

TORS

Good information, Mattie.  Did you go through a TORS as well?  I just got done with mine 6 days ago and am looking at low dose rads beginning in Jan.  

Don (beagledad)

No, no TORS. Just

No, no TORS. Just conventional surgery with a free flap from my left arm. Positive T4 tumor, no nodes involved but one lymph circuit and a bit of jaw muscle. Negative margins but very narrow in some places.

What dose rads are you getting? I'm getting 60gy by the tumor bed and 54gy by the lower jaw area, all unilaterally, except for a small area behind the throat, where there's some sort of lymph circle.

BeagleDad

Rads Dose

I won't know my dosage for a bit.  Have onc appt Thursday.  Just had TORS done 1 week ago for positive HPV tonsil + full lymph node dissection.  Doc claims I will be getting "low dose" and should have "significantly" lessened side effects from rads due to dosage.  
Man, this TORS recoery is a ****.  Still cannot properly swallow.  TORS follow up tomorrow.  

Don (Beagledad)

Mattie65

BeagleDad said:

Rads Dose

I won't know my dosage for a bit.  Have onc appt Thursday.  Just had TORS done 1 week ago for positive HPV tonsil + full lymph node dissection.  Doc claims I will be getting "low dose" and should have "significantly" lessened side effects from rads due to dosage.  
Man, this TORS recoery is a ****.  Still cannot properly swallow.  TORS follow up tomorrow.  

Don (Beagledad)

Yes, I too had complete lymph

Yes, I too had complete lymph node dissection of the neck area. Doc also said I was getting a low dose of rad, which was still the 60 I mentioned earlier. But I'm quite happy with the low amount of side effects until now. Only thing that really plagues me is taste change and that's really problematic. I just tried a banana shake and it tasted like toilet water. That's how bad it is. So I'm sticking to the calorie drinks that my doctor prescribed me, right now. They don't taste good either, but at least they're fast to gulp down.

I'm throwing away >75% of the food I purchase, at the moment, which is very frustrating. But I know I won't eat it, unless the taste at least tolerable. I hardly expect anything to taste good. Only things that do at the moment are my morning coffee and lemon drops. As much as I love both (and am thankful to, at least, being able to enjoy coffee), that's no solution to my nutrition problems.

Worst of all: the taste distortion doesn't even stay stable. It seems to change every day, so that I can't plan on what to eat during the coming days.

wbcgaruss

I Welcome You

Here on the forum and wish you the best. You are going through something most of us deal with-lousy, no, or bad taste when eating. it is hard to eat when food is like this. The suggestions you have so far are good so just get the easiest thing with the highest calories down as fast as possible for now. Your taste will come back but may not be what it was but it might be you never know till it happens. I just have a recipe idea I found on the net awhile back you might try. Two ladies werte sharing it as weight gain and easy to eat. Posted below-Just need a beater to maker it not a blender or anything else-Hang in there-Take Care-God Bless-Russ

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

 

Mattie65

wbcgaruss said:

I Welcome You

Here on the forum and wish you the best. You are going through something most of us deal with-lousy, no, or bad taste when eating. it is hard to eat when food is like this. The suggestions you have so far are good so just get the easiest thing with the highest calories down as fast as possible for now. Your taste will come back but may not be what it was but it might be you never know till it happens. I just have a recipe idea I found on the net awhile back you might try. Two ladies werte sharing it as weight gain and easy to eat. Posted below-Just need a beater to maker it not a blender or anything else-Hang in there-Take Care-God Bless-Russ

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

 

Hello wbcgaruss and thanks

Hello wbcgaruss and thanks for your input. This recipe brings me halfway back to what I read from Bruce Dickinson from Iron Maiden who had HNC in 2015 and who says he lived on custard for a while. I think I'm going to go and focus on pudding/custard-like solutions. Perhaps go to Holland, which is not far from where I live, and buy that pudding specialty in bottles, which is called Vla, and has high amounts of calories. Perhaps I could live on that for a while.

One of the very few other foods I found tolerable, and by tolerable I mean that it doesn't taste completely horrible, are baked beans with a fried egg. I can even add a bit of Worcestershire Sauce, which, already, is quite daring, given its very particular taste.

 

motorcycleguy

Mattie65 said:

Hello wbcgaruss and thanks

Hello wbcgaruss and thanks for your input. This recipe brings me halfway back to what I read from Bruce Dickinson from Iron Maiden who had HNC in 2015 and who says he lived on custard for a while. I think I'm going to go and focus on pudding/custard-like solutions. Perhaps go to Holland, which is not far from where I live, and buy that pudding specialty in bottles, which is called Vla, and has high amounts of calories. Perhaps I could live on that for a while.

One of the very few other foods I found tolerable, and by tolerable I mean that it doesn't taste completely horrible, are baked beans with a fried egg. I can even add a bit of Worcestershire Sauce, which, already, is quite daring, given its very particular taste.

 

Mattie,

The taste thing is more challenging than people who have not experienced could believe.

I still remember a piece of Key Lime pie I ate, early in my treatment - that tasted SO good, I had to have another!

After treatment, eggs started tasting good to me ... and then chili. Now - there are several things that taste good...

Hang in there - it's tough while you're in the middle of it, but it get's much better!

I hope you are having as nice a holiday with family and friends as possible. If nothing else, Cancer treatment reminds us of the importance of spending special time with loved ones!

mg

Mattie65

motorcycleguy said:

Mattie,

The taste thing is more challenging than people who have not experienced could believe.

I still remember a piece of Key Lime pie I ate, early in my treatment - that tasted SO good, I had to have another!

After treatment, eggs started tasting good to me ... and then chili. Now - there are several things that taste good...

Hang in there - it's tough while you're in the middle of it, but it get's much better!

I hope you are having as nice a holiday with family and friends as possible. If nothing else, Cancer treatment reminds us of the importance of spending special time with loved ones!

mg

Hey motorcycleguy. Thanks for

Hey motorcycleguy. Thanks for your good wishes. It really means something, right now.

Not much happening with friends and family at the moment, due to Covid, but that's okay. I can manage that. What I miss most is going to music events, right now.

I discovered just yesterday that I could tolerate crudities. Tried some Vietnamese summer rolls, which is basically salad in a wrap, and they tasted fine. It was the first time I actually experienced a good taste, in weeks. I'm not much of a salad guy, so that'll be a challenge but I'll press on in that direction and see what other crudities and salad I can tolerate. Perhaps Turkish starters, which are mainly vegetable purées could work.

As a rule of thumb, right now, anything that has been processed, either by cooking or adding different condiments and spices, tastes from weird to bad.

motorcycleguy

Mattie65 said:

Hey motorcycleguy. Thanks for

Hey motorcycleguy. Thanks for your good wishes. It really means something, right now.

Not much happening with friends and family at the moment, due to Covid, but that's okay. I can manage that. What I miss most is going to music events, right now.

I discovered just yesterday that I could tolerate crudities. Tried some Vietnamese summer rolls, which is basically salad in a wrap, and they tasted fine. It was the first time I actually experienced a good taste, in weeks. I'm not much of a salad guy, so that'll be a challenge but I'll press on in that direction and see what other crudities and salad I can tolerate. Perhaps Turkish starters, which are mainly vegetable purées could work.

As a rule of thumb, right now, anything that has been processed, either by cooking or adding different condiments and spices, tastes from weird to bad.

Mat,

I'm just glad to hear that you're still eating, instead of using a feeding tube. I've heard too many stories on here, of people that experience an esophagus that "forgets" how to function!

From what I can tell, you're doing pretty well - compared to most, and I hope you continue to keep your spirits up!

I can feel your isolation, because of the Covid thing. I personally am working on a construction site, away from home, in an area currently seeing a Covid spike - and other than work, and a couple trips to the grocery every week, I don't go out. I miss my girlfriend, kids and grandsons!

Keep in touch with your loved ones - even if it's just a daily phone call....

mg

Mattie65

motorcycleguy said:

Mat,

Keep trying new things, until you find what works. Eggs over easy was the only thing I could eat for a while. I was on a construction job in Canada, and making trips home to finish chemo (I rushed it too much....). The waitesses at the restaurant asked me if I wanted "the usual'" 6 OE eggs, both in the morning and at Dinner ... for about 3 months!

Then, I slowly added oatmeal .. and a few weeks later, I could eat chicken wings again.

I found a frozen breakfast burrito I love. I buy out the little local store of them, whenever I see them in the frozen food section! LOL

mg

Haha, perfect.

Exactly what I'd do if I found anything I could not only tolerate but actually enjoy. I keep searching.

Mattie65

motorcycleguy said:

Mat,

I'm just glad to hear that you're still eating, instead of using a feeding tube. I've heard too many stories on here, of people that experience an esophagus that "forgets" how to function!

From what I can tell, you're doing pretty well - compared to most, and I hope you continue to keep your spirits up!

I can feel your isolation, because of the Covid thing. I personally am working on a construction site, away from home, in an area currently seeing a Covid spike - and other than work, and a couple trips to the grocery every week, I don't go out. I miss my girlfriend, kids and grandsons!

Keep in touch with your loved ones - even if it's just a daily phone call....

mg

Feeding tubes …

… are something that I had my fair share of at the hospital and, for a single week, at home. Then, out of chance I'd almost say, the area around the hole in my belly got severed by the clamps which hadn't been installed correctly, so they had to remove it in an emergency operation. From there on, I decided to refuse any further feeding tube, even though the radiation doctor really pressed me to get a new one. I'm living on calorie drinks and I'm trying to eat as good as I can. I'd say that, at the moment, I manage to get around 3-400kcal from solid food and the rest from calorie drinks, which are on prescription.

Hardest thing is that eating is usually something I do to relieve stress. I love good food. Right now, it's something that stresses me. But I press on. Yesterday, I discovered a new sort of food which I could tolerate: hummus. You never know what will happen until the thing is in your mouth. Also tried a few fresh olives but those were terrible. I think that crudities are the way, though. They offered the best results to this day.

TangoWhiskey

TangoWhiskey says hello.
Welcome to the site. I finished treatments for stage two throat cancer in March of 2020. Nine months later I'm still searching for something I can eat. Sometimes eggs work for me and sweets seem to be more and more tolerable but of course I'd like to get some good old meat and potatoes into the diet. A cheeseburger would be a dream come true! Keep plugging is what I've been told so I'll pass that on to you. Boost is my drink of the day but we mix it with strawberries, bananas and some ice cream and it works. Bread and meat aren't working right now either but the folks on this site are helpful and knowledgeable and it feels good not to fight this alone. Good luck!