Just finished treatments last week. Worst part is not being able to eat except thru peg tube (everything taste like cardboard). They are saying like 6 mos to regain my tastes, which means another 6 mos of this stupid tube. Does it really take that long to get taste back? Anything I can do to help stimulate taste buds back to health?

Harley,

Congrats on finishing. I'm four weeks out and my taste buds sort of work, but only for a few minutes before they crap out. Better than nothing...

Anyway, I just mentioned this to my speech path. and she recommended that I try to drink grape juice before and during eating. I've just started, but it seems to help a little.

For what it's worth...

Clint

Congrats on finishing! Your taste buds will be back to normal on....the day they're back to normal. Not to sound flippant, but they will come back at their own pace. Some folks have returned to normal within a month or so (not many) some have taken over a year.

I'm 10 weeks out of radiation, and I have about 60% of my taste back, for the first 4 or 5 mouthfuls. Ater that, they kind of fade away. I didn't have a PEG, so not only did I deal with the pain of swallowing thoughout radiation, I did it to swallow cardboard. The first time I could actually taste anything was reason to celebrate!

There's really nothing that you can do to speed things up other than keep trying different things, and do it every day. All of a sudden, you'll have that " hey, I can taste..." nirvana.
Good luck!
Wayne

Harleydude,

Are you using the tube because of the taste bud problem or because you can't get food down any other way? Please tell us some more about your diagnosis and what kind of treatment you've had -- that will help people respond whose cases are similar to yours.

If you're using the tube simply because of the bad taste, I would urge you to keep trying to get some of your nutrients by mouth in order to keep your swallowing function going as much as possible. Most of us here have dealt with the temporary loss of taste buds, and it goes with the territory, but eventually they should return to normal. I'm another one who didn't have a PEG at all -- just managed with lots of liquid/semi-soft foods that would slide down with little or no chewing (sometimes had to numb my mouth ahead of time). As Wayne said, there's no way to generalize about how long it will take to get all of the taste buds back, as experiences vary from one person to the next.

Cathy

It took well over a year for me to get tastebuds back after radiation. I remember being only able to taste coffee and V8. good luck

Harleydude;
I would get involved in eating & swallowing as much as you can. The more you do the easier it will get. Also, you might be surpised as you will start to get taste sensations as you progress. I am almost six weeks out from radiation/chemo as of this week and I really get strong taste sensations at this point from salty things when I first start eating. It's a positive thing to get those sensations. I still can't get enough from eating so I'm using tube as well, but it gets better and easier every day. My RO told me to keep challenging myself and I would be surprised how much of the swallowing pain I could break through. (he is correct) Just remember to wash it with plenty of water to offset the lack of saliva.

Best Wishes,

Steve

Harleydude,

I am 4&1/2 months out of tx and the taste buds are still missing for the most part. My docs are careful not to make any promises as to when full taste will return or even if will fully return. The best I can get from them is that it takes 2 to 10 months on average. You need to make minimal use of that PEG. I had mine a total of 3 months and had removed about a month after tx. You need to try and swallow as much as possible to avoid future swallowing problems from lack of use.

Good luck!

Bill D.

Hey Harleydude, Wow, another Houstonian! Do you go to M.D. Anderson? Welcome to this site, this is the best place to get information there is on oral cancer, and the people here really do care! Plus it makes it nice to know that others have gone through the samething you have. I am 2 months out of radiation and can taste most everything, of course some are to spicy for now, but everyday my taste buds get a lil better and better! I just had my tube removed in November, and towards the end, mine started bothering me too, but never had pain in the early stages. Just remember something tho, everyone is different so your taste could return tomarrow who knows, but just have faith that it will return and take your time healing, your body has just gone through something very stressful, relax...everything good will come in time!!!

Ditto on getting involved with eating and swallowing ASAP and lose the tube if you can.

I'm 6 1/2 months out now and back to eating-but my choices are limited. I'm off the Ensure, Prosure, & Naturade Weight gain after living on it exclusively for nearly 5 months. My energy level is coming back & I'm feeling more 'normal' BUT-I don't eat for the taste. NOTHING tastes good. I eat only for the nutrition. For awhile there, I didn't even experience hunger....I just got weak and faint when I needed food. Now I get really hungry early enough to do something about it.

I'm for doing everything we can as early as we can to recapture the old 'normal' ASAP

I am 3 months out and I didn't have a Peg. I have been able to eat anything I want, including spicy foods for at least a month now and my taste is improving slowly. I can taste just about everything but it doesn't always last long. I did have a pot pie the other night and I was surprised that I tasted everything the whole meal.

What I dislike more that anything is this %#*& dry mouth. I only have to deal with the taste thing 3 or so times a day but the dry mouth is a 24 hour pain in the BUTT. Everytime I meet with the IRS or a judge or even my clients I have to explain about my dry mouth for fear that they think I'm nervous about something. I need a sign on my forehead. Ugh !

David, have you tried any of the 'moisteners' like Stoppers 4, Oasis Moisturizing Mouth Spray, or the Biotene Oral Balance Liquid? Brian likes the Biotene and says it allows him to lecture for 2 hours at a time without any problems. There's another one called 'Numoisyn' but I haven't tried that. They all help to some degree, but I still need to carry a small bottle of water everywhere I go.

I tried the Oasis spray a few months ago and didn't notice any improvement. Maybe I'll give it another try.

I assume I can get the Biotene at a Walgreens? What about Stoppers 4?

I would love to be able to talk for 30 mins without depending upon my water bottle.

Thanks

David - the Stoppers4Dry Mouth really works! Not just for dry mouth but to be able to sleep at night. My son's doctor had recommended the "Ocean" spray which didn't work, and it wasn't until I did a search on this site (top of p.) and found out about Stoppers4 that my son was finally able to get some sleep at nite and what a difference it made. It's over the counter and I got it at Walgreen's for around $5. (Others mentioned were Salivart and Saliva Substitute) There is Biotene gum, too that helps. Regarding taste buds, my son discovered something when he was eating one of those blueberry breakfast bars. He says he sort of has "virtual" taste because when he smells it, the smell goes up his nostrils and towards the throat and helps him to "almost" taste it. Must be true that when we lose one of our senses, the others get stronger. So now, he smells everything before eating.

Anne-Marie,

I named a daughter Anne Marie after the TV show My Girl and I can't remember the actress' name now but I loved that show.

I'll get some Stoppers4 and it better work!!! LOL I tried the gum a few months ago and it didn't do anything. Maybe I'll try it again.

David, The nane of the Actress is Marlo Thomas Who is also a gigantic cancer advocate with St. Judes Hospital -- helping children beat this awful disease. Hope all is well David and I enjoy all your posts. Best of luck!
Mark D.

Yea Marlo Thomas. She was the daughter of Danny Thomas and I believed appeared on his TV show. Now I can't think of his shows' name!! This could go on for some time. Was his show called "The Danny Thomas Show"? He was funny his whole career. This is going way back.

Thanks for the memories.

I remember it as the Danny Thomas Show, so if that's not the real name please don't tell me I'll start to think I'm senile. It was a great show.

Regards JoAnne

I thought Marlo's show was "That Girl"

You all win the prize!! Marlo Thomas, daughter of Danny, was "That Girl". Danny Thomas hosted "The Danny Thomas Show" and I believe he was the founder of St. Jude Children's Research Hospital. (JoAnne, senile-come on!) Great television star and a true humanitarian as well.

By the way, thanks for the tip on the Stoppers 4 Dry Mouth, Ann Marie. I'll have to give that a whirl!

Steve

Well all anyone has to do is read this post to know what chemo-brain is. Tim now that you no I,m only 160 lbs. does not mean you can correct me in front of my friends.Boy would we suck as a team playing trivia pursuit.

My one claim to fame is as a child I watched a lot of TV with my Dad. Man did he love western movies. Every time I see a John Wayne movie I think of him. Anyways my point is I know a lot of old useless TV/movie trivia.

Mark just so you know I'm 150lbs, so no worries there mate.

Hey, just checking on you, we havent heard from you in awhile! So how are the taste buds doing? How is your recoving coming along? Would love to hear from you...so be a pal and reply.

Starting to eat a few things by mouth, but puppy dog is getting the larger portion of it....so nice of her to keep food from being wasted.

HD,

She will be well fed by the amount of food you won't eat for some time. LOL I order childrens portions when taking food home and sometimes I can't even finish that!!!

Wow, David, what a great idea! I waste so much food, heck i never even thought about ordering kids meals. Thanks for the great tip!!! And Harley, im glad your beginning to eat, what an accomplishment, your starting to heal, great news.

David That is great advice. Our whole life we have been programmed for 3 meals per day, People like us should eat smaller portions maybe 6 or 7 times a day.

Hi Harleydude,

I'm a Pcar guy myself, but have a place in Myrtle Beach and love Harley week.

I think your situation will improve quickle. I was not able to eat for 7 weeks following my treatment. My treatment finished on Dec 6, 2004. It was Jan 28th, 2005 I was able to get some oatmeal down. I found sweets to really stimulate my taste buds. Oatmeal with a generous helpng of brown sugar slid sown nicely. I gradually improved month by month. Now, after two years, my dry mouth is almost all gone. Just a little in the middle of the night or when eating something that takes a lt of saliva, like bread or cake.

Hang in there, I think things will improve rapidly.