taste buds after radiation

Helaine62 said:

taste Buds
I finished my 33 treatments June 13th and I still do not have my taste buds back and still have the dry mouth. I was told by my surgeon and ocologist that it could be quite a while. I hate my g tube and I want it out. I wish I could tell you that I have it back. Sorry. What I can eat Is; Cream of wheat hot cereal w/sugar, milk shakes made with whole milk, carnation instant breakfast, yogart, ice and strawberries or bananas. Blend it up and it tastes good. I also eat ice cream cups, vanilla pudding, apple sauce and tomato soup. My husband has been making all kinds of food for me to try and all I do is gag and cry, I cannot eat it. I do not know about the rest of you but I have lost a lot of weight and I am tall. This bothers me more than anything. I still do not have my strength back and I do not sleep through the night. The Doctor's say that I am rushing everything.....The days are long especially since I am used to go, go, going all the time. I just want to eat and gain weight and get my strength back to the way it is. Already have had two monthly check-ups:one with my surgeon and one with my ocologist. My surgeon put the tube down the nose and said everything looks good. Oh by the way. I had a golf ball size lump pop out on my neck and than it disappeared. They found it with one squamous cell in it. They put me through the ringer with all the tests and found that I have no origin. Only 5% of people have no origin. It took the doctors months to fiqure out what they were going to do with me....finally it was radiation. That part of the journey is over, now the recovering part. Would lov to hear from anyone. I love reading what you wrote and some of it is helpful. Take care everyone. PS: I love cantalope also.

Skiffin16 said:

Taste Bud Recovery
I received my last dose of 35 radiation treatments the end of June 2009. I had been diagnosed with stage III SCC in the right tonsil and a small tumor on that same side behind and lower than my ear.

I didn't need a PEG, but it's a rough diet for sure...for several weeks it was just Ensure and water, and even the water tasted like sweat. Most of the time I needed a numbing solution just to drink that. Eventually little by litte I started feeling better.

I have regained a lot of taste, but not nearly as much as before treatment as of yet. Some things (a few) the same as before and with as much intensity. But most things taste similar, but the taste goes away after a few bites. Sweet seems to be the main taste holding out, I have hardly any taste of sweetness yet. Every once in awhile I'll notice that a taste is a little stronger than a few weeks ago. I'm hoping this progression will continue.

My salivary glands are still pretty much shot, hopefully I'll regain more than I have. It's mainly the worst at night. It's a cycle, I get up to use the bathroom from all of the water during the day. My mouth is bone dry so I drink a little water, do my business and return to bed. A few hours later I repeat that cycle....

If this is all the taste and salivary function that returns, I can live with it. I definitely seem to have it better than some others. But I'm not giving up hope for more and from the survivors here, it seems that more than likely as time goes on, some functions might still improve even more.

John

Skiffin16 said:

Taste Bud Recovery & Dry Mouth
Thanks Hondo,

I'll definitely give the Stoppers a try.....

LOL, I actually just changed that original photo to one of me on my Hewes Redfisher with a limit of Pompano that a friend and I caught in Tampa Bay. I live fairly close and fish there often. The other was on another friend's Maverick Master Angler. We were fishing near the Skyway Bridge for grouper that day at the mouth of Tampa Bay.

Any day that I can get out fishing is a great day....but also right now any and every day that I'm a survivor is an awesome day.

John

Skiffin16 said:

Tampa Bay & Fishing
Yes, I love to fish, I try to get out about every week-end if I can take care of everything during the week.

Sorry about your son not finding work it's rough right now, what does he do?

Maybe we can get together for some fishing depending on your schedule and timing. I'm taking some vacation time next month and might be out of town during that time though.

Yes, Tampa does have some good places to eat. Where are you living now?

John

RoseEm said:

My experience - 14 months after radiation
I had 38 daily radiation treatments to my neck, throat. High doses. I finished a year ago February and while some of my taste has returned, my tongue seems to have been permanently affected. I cannot tolerate any kind of spice at all - even mild black pepper used sparingly. My doctor tells me to give it more time, but (and I really don't mean to be a "downer" here) after you try and try and try to eat what were once your favorite foods and can't, well I just don't try as much. So, my eating is really more like taking medicine 5 times a day. Yogurt, some cereals, Ensure, Boost, egg salad, cheesecake (my favorite), that's about it. My throat muscles were damaged, so that changes my situation from yours.

I've talked with people at my radiologist's office and most seem to have their taste come back within a year.

I guess what I'm saying is, "Do what I suggest and not as I do!" Keep trying. I used to hate the texture of cheesecake and now it's my super-treat, so things DO CHANGE.

Good luck - keep trying!

BigMike_LV said:

Taste Buds
Hi Everyone

Much like slick52 my radiation treatments were over last Monday. I was being treated around the head and neck as well as my tongue. I had 35 treatments of radiation and 3 chemo (cisplatin) Im relatively young compared to most of the folks Ive seen and talked to only 41. I responded really well to the treatment lost some weight and was able to continue working through the entire process. I can eat much better now than before but its mostly soft-ish stuff, soups, eggs, cereal etc.

I have many of the same questions?

Thanks