Taste/DryMouth

MissBlueEyes4Life

Guys i'm losing hope here, i am approaching 7 weeks post-radiation and am 2 weeks post-chemo. (all done!)  Taste buds, will i ever taste food again? So far i can taste the salt in the rinses that ive done yet i tried a french fry and nothing. Theres a taste to a strawberry-banana drink mix but i couldn't tell you it was strawberry-banana, its just a different taste, like i almost know what it is. I've started eating icecream, can't taste it but it feels good.

Are there certain foods i should be trying? So far ive tried spaghetti-Os, pancake/syrup, chocolate/strawberry/peach icecream and nada. It seems the only thing i can taste is the salt from the rinses, the different taste from some fruit drinks and Vanilla boost (what is it about vanilla boost?).  I can't eat dry food yet, for my mouth is too dry which is another issue..

Dry mouth - will it ever get better? I'm thinking how could i taste things when my tongue is a desert and gets 0 saliva when eating dry food.

I'm not sure if i'm too soon being only 2 weeks out from chemo, i thought radiation killed the mouth more but not sure i should look at the 7 week or 2 week, quite a difference and i thought being young would help (im 23) but idk about that. Ive tried ZINC, been several weeks not sure its doing anything..

it's so hard, I miss eating so badly, it is making me VERY depressed and reading on here doesn't help with the whole 'new normal' 'took a year' comments. I'm tired of only using the PEG for eating, i want to be normal...

 

Need some hope guys, anything.

SASH

Time does heal

Give yourself some time as the taste will come back.  You won't know when so keep trying different foods and one day it will surprise you that you can taste again.  

Some do get some relief on the dry mouth, but it probably wont be back to like it was before radiation.  Some of us have learned to live with the dry mouth and to help with eating we take sips of water or other liquids to help moisten food and get it down.  

yensid683

Take Heart!

Taste will come back, but maddeningly slowly and gradually.  I was at a similar point in terms of taste as you were, I had almost no ability to taste anything, stronger flavors like grape jello would come through for the first bite but would quickly fade.  It was at about 2 months after the last rad that I was able to detect salt in the salt water/baking soda rinse I was using. 

It took a long time for taste to recover and become tolerable.  I didn't taste much until around 3 months post rads, and after that it built fairly well, by 6 months I could taste just about everything though some flavors - particularly sour - no longer work very well.  Makes me miss my formerly favorite candy, Ferrah Pan Lemonheads.  Temperatures took an even long time to come back, I was some 8 months post rads before I could tolerate the cold of ice cream!  Fortunately (maybe unfortunately for my waistline) ice cream works just fine now.

Saliva may come back, in the first few months I had almost none, and it is about 70% of normal, but for the most part I have to keep a bottle of water with me so I can take small sips while I chew.  Very few things work without water, fresh fruits and vegetables are amoung the best, pasta with sauce works too, and surprising me to no end, so does good barbecue!

I know it seems like it is taking forever to return to some semblence of normal, but don't fret, everyone heals at a different rate, some slower, some faster, but you'll get there!

Emmy1954

Im only 4 days post rad.  Can

Im only 4 days post rad.  Can't taste anything so frustrating..  I do have saliva though, I went to accupuncture throughout my radiation and continue to do so.  It made a world of difference.  Didn't have to have a feeding tube took everything by mouth and my saliva glands work most of the time.

frokker68

I am 8 weeks post treatment

I am 8 weeks post treatment and I still can't eat.   My throat is so sore it hurts to even swallow nothing at all.   I feel like you in that I wonder if I will ever heal.   I have been on PEG since May and am really tired of it.   

CivilMatt

slow your roll

MBE4L,

There are a few members who have very little to no taste, chances are you will not be one of them.  Salt is a good start, you are most likely on your way. Hope in seconds and minutes, but live in weeks and months.  It is all slow to return (for most, but not all).

Try everything, always have a drink ready, be careful about getting caught sticking food in your mouth with nothing to drink, those days have been radiated away.

Dry mouth, get used to it.  Some members get lucky, but most do not. I use xylimelts nad have tried many things.  They all work a little.

Zink, pink, mink, kink, sounds like a money maker to me.

It was never hard for me, I embraced the 7 months of smoothies with a mix of everything under the sun tried.  I had my PEG popped at 2 weeks post and now enjoy virtually everything, be it at a slower pace and lots to drink.

You will be fine.

Matt

Klingels

frokker68 said:

I am 8 weeks post treatment

I am 8 weeks post treatment and I still can't eat.   My throat is so sore it hurts to even swallow nothing at all.   I feel like you in that I wonder if I will ever heal.   I have been on PEG since May and am really tired of it.   

4 weeks post treatment

My husband is in the same boat. His throat is too sore to swallow anything. He can only eat and drink through the feeding tube.

jbrenna8

Milk and Buffets!

My husband completed his initial chemo/radiation treatment in August of 2016 and had his PEG tube until November.  As he transitioned to eating, what helped him the most was drinking whole milk as he ate.  The milk has more "weight" than water, which tends to disperse in the mouth.  This helped him swallow more easily and the extra calories were a plus.  He did not drink milk at all prior to treatment because he didn't like the taste but in this instance, the change in his ability to taste was a silver lining.  Also, we started going to buffet restaurants as they provided a great opportunity to taste many types of foods and textures in small quantities and with the ability to go back for hot food as often as needed because he ate slowly.  And in that environment, no one notices anything so it allowed us to begin socializing more with friends over a meal.  Hope this helps.

tommyodavey

Time, the Great Healer

At least we all hope that time will heal the taste buds.  Remember, the radiation killed all the buds and your mouth is now growing new ones.  It takes time.  For me it was a matter of months.  For my father in law who also suffered from SCC, it took two full years for his to be back to normal.  All he cared about was his beer tasting like nothing.  It sure didn't stop him from drinking it though.  

So how long for you?  No one can really say.  We hope you see results soon.

Sinus2016

Not the same

Yes, I'm eating better and tasting more but I figure eventually I'll develope a new norm.  I remember finishing my treatment in October and looking forward to a normal mouth without thrush, sore gum and sensitive teeth. For me the progress seemed slow and during my follow up visits I would ask how much longer?  The answer was it will get better.  My goal was Thanksgiving to enjoy a nice thanksgiving dinner and savor all the flavors and enjoy the feast. Disappointedly the only thing I remember getting down without too much effort was the mashed potatoes and gravy which was very bland. ( couldn't taste a thing)  Couldn't swallow any thing without something to drink. Mostly water and yes I started drinking more milk than my grandkids.  Well two months to go since the end of my treatment and I am now able to use catsup on my potatoes, but a nice juicy steak just tastes like chewing leather. I chew and chew, mix water and chew some more ends up being more effort than it's worth.  The good thing about my dry mouth is that I eat more salads, less meat and suspect my diet is much better!  Hey it's all good I'm here getting delight watching my grandkids eat so deliciously even though most it end up on their face. :>)