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How to make eating easier?

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

Hello, I am new to the board.

I am currently undergoing radiation and chemotherapy treatment for a head/neck malignancy. This has resulted in dry mouth and some lost of taste. I taste sweet things the best and they go down the easiest.

The major problem I have is that it is difficult for me to eat anything other than sweets (ice cream, chocolates, etc.) and even they are hard to get down at times. Even water tastes funny to me - it has a thick, soapy quality to it. My doctor says my taste buds and salivary function are currently around 10-15% of what they should be.

I get hungry and I have an appetite. Foods sound appealing, and they look appealing. But when I go to eat them I usually cannot. I take one bite and I feel nauseous. I have tried all my favorite foods - chinese takeout, burgers, mexican food. The only foods in this category (savory foods) that I have had any success with are chinese fried shrimp dipped in sweet and sour sauce. It's the sweet sauce that helps them go down. Some foods such as plain fruits and steamed vegetables go down okay, but I need to get more protein and I'm getting tired of ice cream.

This is a big problem, of course, because the doctors don't want me to lose any more weight and it is important to stay well-nourished during treatment. I have tried taking antinausea medication prescribed for me, drinking lots of water, even lemon water, before and while I am eating. But it still difficult.

Any suggestions to make eating easier under these circumstances would be appreciated. Thank you.

phrannie51's picture
phrannie51
Posts: 3847
Joined: Mar 2012

found us....this is the best HNC group on the internet, and you'll find lots of support here.

I'm sitting here 9 months out of treatment, wondering how you got to keep your sweet tasters so far into treatment...Smile They were the first to go for me, and don't seem to plan on making their comeback soon. 

Ensure is sweet and comes in flavors.....there is also Skandi Shakes which are mixed with milk...they are tasty, and full of nutrition pluss close to 700 calories a pop.  You could also start making up your own blended smoothies with icecream and milk, but adding protein powder into them to up the nutritional value.  I used avacado's for a while, till the texture became too much for me to get down.

You don't say how far you are into treatment....if you're halfway or less, there's the chance the bad taste will slide into "no taste"....then pretty much everything can go back on the menu as long as you can swallow it.....it all tastes the same, somewhere between sheetrock and chalk....but better than soap, for sure.  One thing I had at my elbow pretty much all thru radiation was milk....plain old 4% milk.  It's good for hydration and it's nutriticious, decently high in calories.  I was sucking down a gallon every two days in addition to my Ensures and Boosts.

There's be others on here with nifty ideas of things to give a try.....that's one of the great parts of this board.....you can try something, and if it doens't work, there's another idea in the wings....

p

PS...you mentioned shirp.....for a long time I could eat shrimp salad, the kind made with macaroni, and sweet mayo dressing (mayo, milk, and sugar).....

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

I've completed 2 weeks of a 7-week treatment program. Radiation Monday through Friday and 3 rounds of chemo (cisplatin only) every 3 weeks. I've done one round of chemo so far, next one is in about a week. I hope my sweet taste doesn't go...that's all I've got at this point.

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

 

cadharose,

Welcome to the H&N forum, where food is a big topic.

For me, the taste, no taste, awful feel and terrible texture where so great I chose to live (happily) on smoothies for 7 months. I was always trying different foods, but they disgust me so much I just did not want anything to do with them.

Point being, you have to eat (or drink) something full of nutrition, for me it was smoothies, for you I don’t know, but if you can eat ice-cream you are part way there.

At 7 months post my “taste buds” and “feel buds” awakened from a radiation induced haze and smoothies became a thing in the past and I was sitting at the table and going back for seconds.

The taste buds are a mystery; we have 9,367 H&N members and just as many stories.

Maybe an ice-cream taco?

Matt

 

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

I may resign myself to nothing but shakes and sweets. That's do-able and I would get the nutrition I need that way, but it is depressing to not be able to ever enjoy any food :( I'm a foodie and I love to cook and eat. I am hoping that part of my life is not over permanently. The doctor says taste buds and salivary function should eventually return to around 80-90% but probably not 100%. Does anyone think their taste/salivary has come back 100%? If somewhat less than that, are you still able to enjoy food just as much as before your treatment? So maybe you don't really notice the 10% loss?

Roar's picture
Roar
Posts: 250
Joined: Mar 2013

I am 4 months post treatment with identical treatment to yours- I would put my taste at around 70% of what it was before treatment. Sweets taste salty to me. I am learning to go with the flow. I used to be a big steak eater. I can't swallow it like I used to, so I eat hamburger - it goes down easier- I like to eat things that are moist like meatloaf, egg salad. And recently I was ale to eat a subway sanwhich. Can't really taste all the cold cuts but I can almost taste them. The chemo days were the hardest for me - hydrate yourself well before and after chemo. The last one for me was tough. You will do fine. Take one day at a time. And eat as many calories as you can- whatever they are. Good luck and stay strong

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

It has for me, twice.  I've been through complete sets of radiation twice.  The first time, years ago, it took about four years before I could honestly say taste was normal.  The second time, just fifteen months ago, taste returned almost immediately.  Don't ask what the difference was, I don't know. 

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

cadharose,

I am a foodie too (with cheese), but this detour with cancer kind of directed my path for a while.  Some people get back 100% taste and saliva and some get none and the rest of us make–up everything in between.

I have started to enjoy hamburgers and steaks again, but ice-cream (which I use to love) is running in last place.

You are just getting started so don’t waste time find some drinks and food you can handle because it is likely to get more difficult.  Don’t be too mad or upset with food or taste, you have to be ready for other things.  Do like the rest of us and complain about food post treatments.

I wish you the best, but don’t get to hung up, find your path of most nutrition and exploit it.

Treatments will end,

Matt

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hi Cadharose,

Welcome to the boards. 

I see you're 2 weeks into a 7 week treatment. It's encouraging that you're still in good shape for the most part concerning eating. Many here I can tell you are jealous that you can eat ice cream! Sweet is one of the first taste things to go. I would eat what you can while you can. Look into the Ensure and Boost drinks as well as whey protein and such. Smoothies and other liquid nutrition may be beneficial as well. As you move further along in your journey, your ability to eat very well is going to change. Saliva will be further compromised and your taste may go south as well. I lost saliva but amazingly held onto my tastebuds. Things were a little "off" but I kept probably 90% through 6 weeks of treatment. 

The ability to eat is where I suffered the most. I hit the wall during my third week of treatment. Solids went bye bye and I went to a soft diet. By the 4-5th week I was on liquids only and by the end of treatment I struggled to drink water. I had a PEG put in on my last day of treatment and have been feeding and hydrating by tube since then (ended treatment 4-24). I still take water by mouth. UPDATE: I had my first taste of soft food last night (a scrambled egg and cheese) and it was wonderful! I was able to taste, chew and swallow without issue. 

As many will tell you, hydration, nutrition and pain management are keys to getting through the treatment. A lot of my issue concerning eating was pain. I was on pain meds (still am) but still. The burns and sores in my mouth and throat along with a case of thrush during (and after) treatment made it nearly impossible to eat. I'm afraid at two weeks in, you've not reached the worst of the side effects yet. The treatment is brutal but you'll be Ok. The end of treatment and the first 2-3 weeks afterwards are the worst. I'm being very real here. You continue to "cook" for several weeks afterwards. Not everyone has it rough but the vast majority do to one extent or another. Stay ahead of your nasea and pain by taking your meds and it will be tolerable. 

So, if those fried shrimp are doing the trick, go ahead and eat them...lots of them... have a dozen or so for me will ya?! :) If it's mashed potatos and gravy a couple weeks from now, go for it and eat what you can. I love good food and not being able to eat or enjoy food has been one of the bigger struggles I have. I know it will take time and eventually I will gain back some or most of what I lost but the reality is I may never get back to pre-treatment eating. If you haven't already, please seek an appointment with a Speech/Language Pathologist and discuss swallowing exercises. Keeping your swallow muscles going throughout all of this is vital in maintaining them. "Use it or lose it" is a cliche that rings very true! 

Best wishes as you continue your treatment. the folks here are great. I found this forum in January and everyone here has been awesome!

Positive thoughts and prayers

"T"

HobbsDoggy
Posts: 165
Joined: Feb 2013

I survived on Ensure and that sort of thing from about 3 week in until about 4 to 6 weeks after treatment.  Slowly went back to sloid food and by week 8+ was almost 100 regular food.  Most of it did not taste good and texture was bad.  I wanted to eat solid food just because I am stubborn.  I am 5 months and 2 weeks out and would say my taste has retruned to about 50% sometimes a little more sometimes a little less.  I start off tasting most food, but then the taste fades.  I keep trying different foods and some days one type works then another. 

I am not sure my  taste will ever be 100%, I will settle for 80 to 90 for sure.  Like you food was and I hope is a major part of my life.  I am, at least for now, shifting my eating, I eat for nurishment not joy and that's OK for now.

From what I understand it can take a year or evey more for some to get most taste back.  I am not sure how I will handle it if my taste stays at 50%, but since I am alive I will take thta and be most greatful.  Still its hard and I pin my hope on how others have recovered thier albiity to taste food.

phrannie51's picture
phrannie51
Posts: 3847
Joined: Mar 2012

out into the future too far.  This is a day by day disease and treatment....sometimes hour by hour.  I remember being just about where you are in treatment, sitting at the table talking to a friend and drinking out of jug of water.  I sipped, and all was fine....sipped again 5 minutes later, and the water tasted salty.....and salty it stayed for a week or so, then either I finally got used to it, or my "buds" did another switch, and it went back to just tasting like water. 

You're going to see changes as you go through this treatment.....things you ate last week are out, things you couldn't eat last week are worth trying again.....towards the end of radiation the blander food was, the better it tasted....milk was my best friend (and I hadn't touched the stuff for 30 years).  Mostly tho, by the 4th week of radiation I was drinking Ensure Plus, just to get a meal done and over in 12 gulps.....plus a ton of water with a side of milk.  Since you're still able to swallow, and you can taste icecream.....I say milkshakes bulked up with whey protien for every meal .......I'd do that now, if I could taste ice cream Smile

For now until the end of treatment tho.....just stay in the day, tomorrow will be here soon enough.....it won't be long before you're announcing you're at the half way mark.....then around the corner you'll enter into the single digits....and then the LAST DAY....

p

metro22's picture
metro22
Posts: 16
Joined: Apr 2013

This is not an answer but for fun.

Miracle Frooties Miracle Fruit Tablets - there are several brands - a candy - made from miracle fruit when let it desolve in mouth makes things taste sweet from 5-20 minutes.

Do not know what it does to altered taste buds

Search amazon - here an example

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

I posted about these a little while back. It's like a hallucinagen for your tongue. My PCP actually suggested I try them. While they worked as advertised, it didn't make a difference with my mouth being so sore. Once I heal it will be cool to see how they will enhance certain foods.

"T"

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