I am wondering if the taste buds ever return to normal? I cannot swallow and have a peg tube but I am going to go to a speech therapist about swallowing excerises. I have recently tried tasting normal foods and they taste so bad I wouldn't be able to eat them anyway. I feel if food isn't going to taste better it seem futile to learn to swallow again. Any thoughts on this would be appreciated.

Sandis,

Don't know anything about your treatment from this post but in my case my taste and saliva have almost returned to pre Tx normal. The recovery is very very slow and took all of 15 months for me to be happy with my taste and I even think I saw some improvement at my 24th month mark. To me the saliva and taste go hand n hand so as my saliva improved, so did my taste.

The other taste problem that arises is that something will taste good the first bite or two, but quickly fades to bland.

Thanks for the responses, I had no idea if it would return or approximately how long it would take. I never dreamt it would take 15-24 months.

Everybody can be different but the majority of us took a long time. Heck it was month 4 post Tx before I posted that I had an improvement in both my saliva and corresponding taste. The first improvement I noticed in taste was that I could taste the first bite almost perfectly. WOW was my feeling but unfortunately the taste only lasted for that first bite!! After that my taste buds seemed to be over whelmed and while it didn't taste bad, nothing seemed to have much of a flavor except some sweets which I never totally lost. Some foods took a lot longer to taste normal, like oranges, and some drinks, like carbonated ones, were unpleasant to put in my mouth.

As I said by my 24 month post Tx I was over healing and my taste and saliva, while not like they were pre Tx, are definitely livable.

What did bother me until I found this site POST Tx were my doctors and nurses telling me that my taste and saliva WOULD be OK within WEEKS after Tx. Heck I was barely alive weeks post Tx. I kept thinking to myself that there was something wrong with me since I was having such an unusual time recovering. Then I found this site and found out not only was I not unusual but I was NORMAL. Knowing that you are normal means a lot when this cancer takes so much of our normal life away from us and you fear it may have taken more than your doctor's planned. That is just one great benefit of this site because we can give new people real expectations and realistic goals.

Sandis, I agree with Pete, My 1st taste is great, forget the rest of them. The food is terrible to taste, but you have to do it. I am almost 2 yrs past surgery but just 1 1/2 past implants and teeth removal along with rads and chemo. Hey , but you know what... we are alive or we wouldn't be posting here......

Learn how to swallow as soon as you can. The taste will resolve itself, but trust me: not being able to swallow is something you need to fix asap. I swallowed all through my first year of rad and Tx and it was not until this year's surgery that I lost that ability. they tell me that maybe by Christmas I can swallow if the next round of therapy is successful. Even if taste does not come back, the smell of foods can compensate a lot. And as David notes, taste recovery is a journey with some detours. So hang in there, it will get better. Even I could finally taste garlic and olives after almost a year of zero and I mean zero taste. then it all came cascading back until the recurrence. SWALLOWing is much more important than taste in the scheme of recovery.

If "normal" taste is a 10, I would say after 17 months my taste is around a 7 or so. Pretty good and I continue to hope for a bit more improvement . . . maybe down the road like David. Darn right - keep working on your throat and swallowing. Best to you.

Maybe I wasn't clear enough, I cannot swallow but I can smell and taste, but things I liked before taste awful. The smell of beef boullion let alone taste is unbearable. I will go through with the swallow therapy but when things taste so bad I don't know what I'll swallow. It isn't that I can't taste it just doesn't taste good. Thanks for listening.

Keep working on the swallowing - it is an important skill and one you don't want to lose.

My taste came back - eventually - but like so many things they seem to last FOREVER at the time yet looking back I can't tell you how long everything 1) Tasted horrid then 2) Tasted Metal and the last stage was 3) Tasted INCREDIBLY salty - even water tasted like someone had dropped a salt shaker in it! Slowly it returned to "normal" but I can't tell you how long it took. I have about 1/8 of my tongue left after the two surgeries and I have a prosthesis attached to my denture to help me speak, but I cannot wear my upper denture for eating. Turns out that is a good thing as we have taste buds in our palate. Who knew? I'm getting along okay even with my limitations.

That has all passed now and I eat more quickly than I used to, but it still takes me forever to eat. I have never finished a meal in a restauraunt - I am the queen of "to go" boxes, but I have learned that this is the way it will be from now on.

You will have to find patience and persistence you never knew you had to relearn to eat. Frustrating but you can and will do it!

Donna

Sandi, I had regained alot of my taste by 9 months after radiation and chemo. I am now about 21 months post rad and chemo and have almost all my taste function back. Just remember we all heal and recover at different paces. Hang in there and tyr to relearn to swallow, it will be worth it.

Geez Christine, Imust be alone out here without taste buds LOL I'm gonna cry a few tears for me.

My experience was about the same as Christine. It didn't all come back at once. Salty things were first and sweets were the last. They started coming back about 3 months post Tx and were fairly normal after a year. Sweets took a little longer.

It is pretty wierd being able to smell one thing and taste another. I never got used to that.

Sadly in some cases the taste buds don't return, but that is far less common.

I still don't have the taste buds but never did lose my sense of smell. In fact I think I smell more of all things than ever before OC. I wish I could taste more than salty because everything has the salty taste after the 1st bite.

I never experienced the salty phase and I really never lost my sweet taste except for fruits. Today my sweet taste is the strongest and thankfully all fruit taste returned to normal.

As you can see, a wide range of experiences here. For me, I went through the phase of when I tried to taste something it was like I had jusrt bitten into something from the garbage heap. Then my sweet taste came back and iI could eat ice cteam, smoothies, stuff like that. Now, 18 mos post tx, I just had my 1st real meal of meatloaf and mashed potatoes and gravy. The main issue now is saliva. It took a lot of gravy to be able to eat that, but the gravy really tasted good. Some things, like cheese and the chicken in Taco Bell chicken tacos still taste terrible but it is coming back. Just keep lots of water on hand. Hang in and do the swallow therapy, it will be worth it in the long run. Btw, there have been times when I've gotten really depressed over this eating issue and thinking I would never again be able to enjoy food. Well now I'm starting to and it feels so good.

Oh yeah, that reminded me I never lost coffee taste and even though I couldn't drink hot coffee drinks, I was able to somewhat enjoy coffee flavored smoothies and milkshakes. Carnation also has an espresso flavor Instant Breakfast but you had to buy a multiflavor pack to get it. My sense of salt taste wasn't excessive. Like Deejer says, there will be a wdie range of experiences here so we all respond and heal differently to treatment. EZJim, I know that my sense of smell "stepped up" while my tatse buds were crashed.

The taste of things for me was one things that did resolve itself, the saliva has yet to return and this has been the most frustrating for me. Things for me also tasted terrible for the first while but over time and getting used to foods again they did get better. I was also stuck with a peg and the tube feedings and actually kept my peg for some time post TX until some of the taste swallowing issues subsided.
Keep at it and it will get better, rough go though.
Erik

You have to work on the swallowing for your future life with eating and enjoying, I am just about 2 years out and I would just love to have a partial taste going for me. My smell has improved to better than it was before, umless things smell better because I ca't tatse or eat most normal foods. My taste, well, if 1 bite were a meal, I would be back to 220 lbs and not bouncig now at 170. Go for it and win. Just never give up trying.

MArtin had the awful salty taste. Now 10 months post TX he tells me the taste is back 60%. His saliva is maybe 50% back so he has trouble with dense bready things and I have to add a sauce to most things. He cannot eat fruit yet, but everyday he improves. He has this perverse thing of taking a sip of my Dr Pepper, he says it's awful and explodes in his mouth, but he still is compelled to try a sip every time I leave a bottle. Weird.
It comes back slowly, but one day it taste sneaks up and you realise there is one flavour that tastes pleasant. For Martin it was custard with cinammon, which was the first nice food in months.
He also went through the one spoonful joyful taste and 2nd spoonful disappointing with no taste.
Be patient and good luck. Make sure you try and practice swallowing, even just sipping water (even if doesn't taste nice)
Cecilia

Tell Martin that it took me 15 months post Tx before I was satisfied with my taste and saliva and even then I saw more improvements around my 24th month. Never had the salty thing going on as I never lost my sweet taste but boy the carbonated drinks were one of the last to come back. Fruits, except bananas, also took a long time but all is pretty near perfect now.

Martin is quite happy that they have come back this far. i think when he was at his worse he thought they would never come back.
Oh and he has another obscession witha zingy food, raisin, he says they explode, but he is still compelled to eat one almost every day.
Grapes without the skins seem to be the only fruit he can tolerate, but that's not too bad. He loved my garden home grown carrots, that tasted sweet like a fruit. on the way to recovery so all good. It's strange going through this a s a "taster", i am often so surprised as to what is nice and what too zingy.

I still can't eat grape skins without them drying me out and I used to love seedless grapes. ugh

Cecilia, how about pears and mangos. Certain fruits are not too acidy. For me it was about the texture as much as it was taste. Cantalope was good too, and peaches.