everything tastes like paste

Wednesday

Hi All.

I'm receiving radiation and chemo for tonsil cancer (hpv+). I had one round of Cisplatin but my reaction was so poor that we may switch to carboplatin. The nausea and vertigo was insane. Also, I have had 16 radiation treatments so far (total of 37 when it is all over). Now that the nausea is finally under control, at least for now until the next chemo, my problem is that all food tastes like paste. It's awful. Sticky, gummy, no flavor. Also, the increased thickness of saliva is not helping either. Does anyone have any experience with when some taste comes back? I'm trying to chew my food as much as possible while I can, but when it tastes so awful, I'm ready to just drink smoothies and give up.

Sprint Car Dude

Honestly.

We are all differn't in how we are treated and heal. It took me a good 4-6 months following treatment for much taste to return. I am now about 1 1/2 years out and think my taste is pretty good. Still suffer from dry mouth and can not even come close to eating spicy food. But it sure is alot better than a year ago. just give it time. As Civil Matt says, You will find your new normal in time.

CivilMatt

Smoothies and give up are not compatible in My H&N definitions

Wednesday,

This is the H&N forum; we all have experience with when some taste comes back (your words).

Why would you say that to drink a smoothie is to give up?  I think to force feed food that tastes like paste, is awful sticky, gummy, no flavor borders on being a recipe for failure (well maybe not failure, but a complication to a person’s life you do not need at this time)  The most important portion of the food eating equation is the nutrition you get every day.  It is indeed, very important to keep eating and swallowing your food and drinking lots of fluids.  It isn’t necessarily a stronger H&N member who continues to eat or one who is PEG dependent.  It is all of us trying to get through this need to get the calories in to your system and if I did it by consuming a lot of smoothies, comfortably and happy, then I consider myself ahead of the game.

I worked very hard to climb back into my chair at the dinner table and match spoonfuls with the best of them.

Food is on the outs with most H&N members at some time during or following treatments.  Some make it back quickly and completely and others, you may not want to walk in their shoes.

If you had started to drink a smoothie when I began this reply you might be ready to settle down for your week-end off knowing that you have met your calorie intake and will be ready for the next side effect to test your character.

I had a Greek Gyro from Arby’s today and we are having ham and beans for dinner tonight.

Best of luck.

Matt

OKCnative

Honestly, "paste" taste can

Honestly, "paste" taste can be better than actually tasting a combination of your chemo and mucous. About the time taste became unbearable to me I switched to liquids only (Boost VHC). It didn't taste good, but was bearable since i only had to drink 4 8oz servings a day to hit my calories.

I also avoided eating foods that I considered a "favorite." I was warned that sometimes when you eat your favorite foods and they taste really bad, then later when you can eat, you won't like those foods anymore nearly as much.

I only lost taste temporarily and my ability to literally eat anything returned very quickly after treatment ended.

AnotherSurvivor

Arby's has gyros? That could

Arby's has gyros? That could be both good and bad...  At around treatment 16 I began to live on homemade chicken/eggdrop soup.  I had to mix in benecal to up the calorie count, it tastes more than a bit like chalk.  One time I had some soup left without benecal that I was saving for dessert. I spilled it, and almost cried.  The rule on food at halfway is just get calories in, any calories.   There is a reason they put a tube in people.  I doubt there is any nice or pleasant way to get thru all this.  The best you can hope for is survival, and that it doesn't leave you too messed up when it's done.

Wednesday

4 - 6 months of paste?

So, should I expect between 4 to 6 months of paste? I just made a smoothie today, and it is also pastey. So now I have to decide to eat or drink my paste. OKCNative, I'll try the boost that you suggest. Only having to choke down a certain number of them seems more manageable. I have avoided them previously because they are made with so much vegetable oil, which grosses me out on principle. But at this point, everything is so disgusting that if I want to avoid a tube (and I do!) then I will have to do something different.

 

Dean54

I lived on Ensures and Liquid Hopes

And still drink them regularly as it is so much easier to get my calories down that way. Almost 6 months out and food still isn't pleasurable and lack of saliva makes quite a few foods off limits. I still mostly eat soups and a few saucy type frozen dinners like "Healthy Choice" and "Lean Cuisine".

Matt said his taste came back at 7 months and since I am almost there, I'm holding him to it. LOL

hlrowe

It's a gradual process

I'm trying to remember but it was about a month post TX that I could start tasting savory items like salt. Sweets were months later and even then the sweetness went away after one bite. I had to take a sip of water after every bite the first year. It took about 6 months to really start coming back and around 3 years where everything came somewhat back to normal. Which is not to say, I didn't enjoy food the first year after TX, it just took 3 years for almost everything to come back. It was also not a linear process for me. I would gain a few percent of taste each month and then it would plateau for a few months, and then taste starting coming back.

It's weird but pop still tastes a little flat. Ice cream is about 70% of normal. Everything else is OK.

I lost around 40 pounds after TX (which I needed to lose most of) but 30 of it came back years later. 

I lived off of smoothies and Kroger brand Ensure. And yep, it all tasted BAD.

Wednesday

thanks for all the feedback

Matt, I wasn't offended in the least by your first post. I can tell that you are a caring person who is on this forum to help others get through this ordeal.  I appreciate all your advice on this question and others I have posted.

I tried Boost yesterday and couldn't get it down. Disgusting. Both salt and sugar are gone for me. I can manage a few friuts or vegetable if they are very wet, but acidic ones are starting to hurt (oranges, tomatoes). I may make some boiled cabbage tonight. Maybe that will help. Unfortunately, vegetables and fruits are very low in calories and protein. It may be time for a visit to the nutritionist.

Although, it doesn't sound like there is much that can be done for several months. At least if I have a ballpark estimate of 4-8 months, I can work on getting my head wrapped around this. Right now I'm still in denial, like, surely there must be something I can eat that doesn't taste like paste or Crisco.  It is going to be a head game. Mind over matter. I have to detach my FEELINGS about food and how it tastes, from how it can still help me heal. Now, how to manage that head-trip!  Wish me luck! ☺️

SuzJ

Exactly

Don't think of it as FOOd, think of it as survival.

I knew what I was eating, I knew what it was supposed to taste like, imagination is a wonderful thing.

 

I am English in the US, sadly, the tea tastes horrible at the moment. Tea was always my go-to for times when I was upset.

I kinda really need it at the moment.

CivilMatt

wow, you made me write my longest post in over 6 years. Happy?

 

 

Wednesday,

I am sorry I wasn’t more clear on what I think (and maybe know or suspect) you are up against and the timeline for this particularly bad side effect.  If I offended you, that wasn’t what I wanted.  I often try to use a little humor in this forum and it is usually well received.  The topic of things going wrong with our taste (permanently) you have taken to heart (or mouth and stomach) is probably other than death or becoming disabled from the H&N cancer, is possibly the most serious final result for an area dear to all of us.  Getting together  with friends and  family for breakfast, lunch or dinner, movies and popcorn, birthdays, thanksgiving or just a snack by yourself is paramount to many of us having a good , happy life. People who have not traveled this course and go through the body’s reaction to this bazaar side effect, (which virtually all of us have), they do not have a clue about what we mean when we say about our food "it doesn’t taste or feel right”.

Side note:

Imagine if you will, one of the popular character’s currently on the Food Network.  (You may select anyone, but I will not suggest anyone, because I don’t want to start any bad karma for anybody, you have to be double secure in not accidentally wielding any outside powers you may have in this world). I have been listening to Coast to Coasr with George Noory. This popular food star goes through what any of us have and they want to seek treatment and return to where they were before, but they cannot, because of their body’s reaction to the treatment.  This side note wasn’t necessarily anything important to this story, It is  just a life adventure (a mind experiment) to think about how they would react to such a life changing travesty.  I take your comments about food tastes seriously and I think there is much you can do.

 

Some of the H&N side effects from radiation - food, I don’t recognize it anymore, eating it isn’t enjoyable, taste and no taste, (how can the taste be both No taste and taste?), hasn’t anybody in the H&N forum cracked the code on the food and taste issues? Well, let’s see where Matt would go.

4  6 months of food that tastes like paste.  Try more foods, try everything and I mean everything!  Have your tried fruits, vegetables  raw and cooked (baked, fried, boiled). Have you put some sugar on your tongue or salt. (caution, I would not take the cinnamon challenge even if you recover totally, if you do you will probably blow out your throat, nose and lose all your teeth, so, don’t do it).

Have you tried magic fruit yet?  It is not a cure, but it is fun to try.  I lined up some slices of oranges and gave it a whirl.

I had very good luck with fresh corn-on-the-cob and sweet ice tea from almost day one post.  I also, tried many drinks, smoothies, protein, fruit and vegetable. I do not drink alcohol, but I would not object to taking a shot and if marijuana today gives people the munchies like it did in the 60’s and 70’s, that might be a good move.

You will do much better and possibly be happier if you work at this like a challenge.  Getting through the rads, chemo and surgery are just part of this story.  I could not stand that awful feel food put in my mouth.  Once at Sunday dinner my parents were quizzing me on why I did not eat more 'real food" (I tried to eat, something every day, always), I would have a few spoonful’s of whatever they were eating each Sunday (I wasm't rude, I did show up every week, ready to go) and I would fall back on my smoothies.  On this particular Sunday I placed a can of Crisco on the table (after the  parent, food quiz) and said “this is what food tastes like to me”, it wasn’t an exact comparison to my condition or your’s with paste taste, but it is close to the dilemma, we each feel we are in.  I do understand and if I was a good doctor or a really good H&N whisperer or psychic I might be able to give you an accurate time line to your time question.  And if no one has told you, H&N heal time can be slow very slow.

 

 

I loved my smoothies and I did doctor them up with protein powders and nuts and vegetable oil for mega calories.  And my first summer after treatments I consumed probably well over 50 lbs of tomatoes and cucumbers drenched in olive oil.

Life is what you make it.  This is hard.  Some of the member’s I know, have no taste.  I think 100% moved beyond paste and you should too.  It took my taste buds 7 months to heal, but they did.  On average, your condition should resolve itself and this will all be part  of the H&N challenge.

We might go and get DQ Blizzards tonight.  We have a buy one get one free.

 

Matt

 

 

 

jackflash22

Taste

I thought my taste buds would never come back. I can't remember exactly when I got them back, it was a slow process over two years to get the full power of them again. I can taste everything now. I had a change in taste I used to like savoury and wasn't keen on sweet but now I'm into sweet but dislike most savoury. I'm in my fifth year and any early problems are forgotten now, I feel as normal as I once was before cancer. 

CivilMatt

This is CM all used up trying to help repair paste-buds

 

Wednesday,

Honestly, if you follow the recovery pattern of the average, every day, run of the mill, H&N member to cross paths with me on this site, you will end up better than you think. Most members do well and can taste and enjoy eating, foods and tastes like before.   I did not do much more than drink lots of water (and I still do) and sample foods often and sample flavors.

Side story 1:

When I was in Little League, in the 1960’s, we used to get snow cones at the Little League park.  Sometimes the girl would mix all the flavors together into what we called a Zombie and all us kids thought it was somehow became alcoholic by mixing all the flavors and none of the parents knew this.  I loved being a kid in the 1960’s. You would probably have your taste buds flash back to life if we could somehow get a Zombie snow cone. I am almost sure.  I know the girls name, but we haven’t spoken to each other on 50 years.

Side story 2:

Many of us H&N members have gone to a Chinese buffet to try out a variety of foods, small portions of each and you usually only waste a spoonful of each.  This gets you out and about (you are going out and aout aren't you?)  Have lots to drink and lots of time to eat. And if the paste taste" continues, move on to the food cart on the corner or the chef accross the street who always offers to cook for you.

Side Story 3

Now something I did and it wasn’t to improve my taste or eating, but it was an interesting experience for me, (kind of like I described “mask time” as something I wasn’t very fond of at all, but after I had taken my one Lorazepam I found it to be quite interesting, with the line-up lasers moving around the room, the low whirring of motors on my IMRT and the lockers filled with other masks (upside down and backwards, because the lockers were behind me and I  was looking at them in a “space station” like  position) for other people like me, but different.  Very different, in my one case, and only once I got the music meant for another H&N patient for their rads, their music was a lot different from mine. Matt’s music was oldies rock and roll music from the 60’s and 70’s. The other persons music was new age and their music reminded me of a scene from the cult claasic from 1973, movie was Soylent Green, starring Charlton Heston  as Detective Thorn and Edward G. Robinson as Sol Roth.  In the scene I remeber, Sol is so disgusted with his degraded life in a degraded world that he seeks assisted suicide at a government clinic.  When Sol is "going home", the overture is the principal theme from the first movement of Pyotr Ilyich Tchaikovsky’s  Symphony No. 6, the "Pathetique." When the visual presentation starts, the music is the first movement of  Ludwig van Beethoven’s  "Symphony #6 (The Pastoral)". When the flock of sheep appear, the music is "Morning" from Edvard Grieg”s  "Peer Gynt Suite #1". At the end of the presentation is "Asas Death", also from the "Peer Gynt Suite". What do I know; this is what went through my mind. I do not know how the other H&N patient liked there (as I called it) "new age" music, but I should have thrown my hands up and screamed "do over", but I did not.

Side Story 4:

This is the story I was after and this is the story I am always reminded of when I tell, write or think about the Chinese buffet and my H&N friends.  Please take a deep breath and hang in there. I work as a civil engineer and one of the jobs I do is inspecting and evaluating existing on-site sanitary sewers systems for Manufactured Home Parks, RV Parks, Boy Scout Camps, etc.  On this occasion, accompanied by a coworker to help with the equipment we needed for inspection and elevation work and an inspector for the local Oregon  State agency in charge of approval of these systems.  We paid a visit to a local, private nudist camp, located   just across the river and north of town.  They have a guard station to keep the rift raft out. We were expected and were ushered in.  It was a delight to see all the happy nudie people (I especially appreciated the girls for their can-do-nude-too attitude).  I am only human and radiation is an excuse on here for many who need one (is the coast clear?) What I wanted to mention to Wednesday was if he went there for lunch or supper he might go for the buffet in the buff.  This was funnier when it came to me, than it is now.  It was a day filled with naked stories of people just like us, talking to us, but without clothes. Some people sure live a differnt life than I do.  I guess, you could include this day as part of the "spice of life".  As a side note to this day, a naked lady in a golf cart pulled up to me and waved and she looked very much like my Mother-in-law surprise, surprise (they say, we all have a twin out there).

Wednesday, please try whatever occurs to you, within reason, but don't be down on yourself.  Try a small shot of fresh lemon.  Something, anything to rock your taste buds.

Matt

You have gotten all my attention and I hope you do report back with GOOD FOOD NEWS in the future.

There, complete, THE END!

CivilMatt

jackflash22 said:

Taste

I thought my taste buds would never come back. I can't remember exactly when I got them back, it was a slow process over two years to get the full power of them again. I can taste everything now. I had a change in taste I used to like savoury and wasn't keen on sweet but now I'm into sweet but dislike most savoury. I'm in my fifth year and any early problems are forgotten now, I feel as normal as I once was before cancer. 

Well as I live and breath.

Jackflash22,

I checked my detailed records of my time on this forum to see when our paths last crossed and I do believe the date of our last time together was on December 11, 2017. It was more of a marking of time on the old cancer tree to signify where we are now. 

If I step all the way back to August 19, 2013, on what may have been our first visit, you were feeling the forum out for what to expect for side effects and when would it all happen and what would you do. As always, I refuse to give away the answers to your questions, which were in my  book:  Future Side Effects for New H&N Member’s Starting Treatments, Chapter One: It Begins. I normally, do not try to scare the newbies that is their Doctors job.  Instead, I might mention to stay hydrated, drink lots of water and swallow, swallow, swallow and that is what I did say to you.  Along with a blurb about Lorazepam and music.  My tone hasn’t changed much, I still feel the same way about all the nice H&N members who chose to log on with their terribly, awful discovery.

We did have some intense posts in those days and I still feel badly about not coming to your house when you cleaned out all the old stuff.  That is right in Matt’s interest alley.

Very nice to hear from you, you are using a different picture.  I won’t change mine because our wonderful kitty, Justin is in it with me and she was a ton of soft and cuddly comfort when I was in the midst of my treatment for stage IVa, SCC, BOT, 1 Lymph node, HPV+ (surgery, radiation and Erbitux).

Your friend,

Matt