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taste alteration and suggestions

Pasdaughter
Posts: 18
Joined: Jul 2012

My mom cannot eat anything secondary to the taste alteration. She states everything tastes terrible... Do any of you have any suggestions on what worked for you? Yes, she has her PEG and that is her primary source of nutrition. However, she would love to eat. Thank you for your time! :)

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

a lot of us are in the same boat.
time and patience, that's pretty much it.
I keep trying to test things...yesterday it was pancakes. I got them down, but it was a joyless experience. at least I got the calories.
I'll keep trying, but it really isn't gonna make my taste buds come back any faster. sigh.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Actually...and I'm not sure if she has had rads, chemo or both...

If it's just chemo, that should come back relatively soon, if rads, much longer.

I can't really offer much as for rads loss of taste, and I'm sure many others won't be able either... Basically it is what it is until it changes, and more than likely eventually it will change.

I didn't have a PEG, and survived mainly on Ensure Plus - Strawberry and Jars of DelMonte Sliced Peaches in Light Syrup.

I could barely taste a little of both...and occasionally canned spinach, LOL.

Her having a PEG, she can get her calories in that way. But it's still a very good idea to continue using the swallowing muscles as much as can be so she doesn't lose that ability.

Unfortunately most everything will taste crappy until she starts getting back saliva and taste.

That pretty much varies with each of us...for me, I started getting both back within a month or two...but it took nearly 2 years+ to get 100% of my taste back and around 95% of saliva.

Some have been much quicker or didn't lose taste much at all...some have never completely gotten both back.

Kind of the luck of the draw...but percentage wise, the majority do get significant improvement with time.

Best,
John

Pasdaughter
Posts: 18
Joined: Jul 2012

Thanks for the suggestions of pancakes... I have been asking mom to at least swallow what she can down if it is tasteless. She says she can't. I do understand not being able to eat something that tastes bad... All I can say is thank God for the PEG. :) And most of all, thank God for all of you!

Sam999
Posts: 305
Joined: Mar 2012

When my taste buds were completely gone, i could still taste bolthouse farms arabica cofeee protein smoothie. Try to have her taste something with coffee. She must continue to swallow atleast something every day.

boardwalkgirl
Posts: 263
Joined: Jun 2012

You just have to keep trying different things. Some things taste bad and some thing just don't have any taste. I found egg drop soup, shrimp, eggs and green beans, I usually could get a little taste out of. Cottage cheese and peaches tasted halfway decent. Puddings were nasty. I am sure everyone is different and I just keep trying different things

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

was shirmp salad made with macaroni. It had onions and celery...but my sis left out the radishes...creamy dressing like you'd use on mac salad. Onions mixed in food have never bothered my mouth, and they add a real flavor to things.

Mac and cheese, loosened up with the addition of more milk wasn't too bad (not great, but not bad)...I don't care if something is tasteless, I'll still eat it...but if it stings there is no way I can eat but a couple bites. Texture means something too....like Broadwaygirl said...pudding is really horrible....like eating wallpaper paste.

p

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Unfortunately we can all suggest 20 foods but none or some may work ...so she should approach it as a game: Make a list, cross if off if it does not work.

I had two flavors, cardboard and cardboard with butter :)

Not to make light of it...I know it's hard ...but the good news is it will end!!

Best,

Tim

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

Suggest cheese or baked potato loaded with butter and sour cream

CivilMatt's picture
CivilMatt
Posts: 2903
Joined: May 2012

Hi Pasdaughter,

Give your Mom time, plenty of time. For something so prevalent between most H&N patients, we don’t even know how to describe the taste no taste phenomenon. It is definitely hit or miss for each of us. Some will pick up salty and for some it will be sweet and others nothing. For me at 20 weeks post it is a little salt and a little less sweet, but most things I loved before I love no more. I did find that iced-tea (sweet tea) made with Sweet’n Low is very good (it scored 7 on the Matt taste scale). Until the sweet tea, nothing scored above a 2 on my taste scale (since week of January). Today I mostly live on smoothies, but try anything. I had coleslaw and a piece of fish with a little catsup the other night and it was ok (coleslaw better than the fish).

Now excuse me while I go have a smoothie.

Best,

Matt

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