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taste buds after radiation

slick52
Posts: 2
Joined: Mar 2009

My radiation treatments were over last tuesday.
Does anyone know how long it generally lakes to get tasts buds back?
This id my first time on here.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi and welcome to the discussion boards slick52. Did you have radiation to your head, neck, face ect? What type of cancer did you have? How much chemo? I am sure someone will answer if we know what you have been through. In my case I had 25 radiation treatments to the right side of my face. I lost half my taste buds, saliva glands and have scar tissue in my right sinus. This was 6 years ago and nothing is going to return. But the good news is that I am still alive. I just eat spicy food and pizza with peppers so I can taste it. Anyway if we have a bit more information I am sure someone can help a little better. Slickwilly

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

mom had radiation to neck had SCC to throat she got her taste buds back in about 3 months some get theirs back others do not hopefully you will get yours back if not like slikwilly says youll find different things to taste along the way, best wishes

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

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!

mmalar97
Posts: 2
Joined: Nov 2009

Rose EM: You mentioned that there are not too many things that you can eat. Well, I turned 62, and was pleased that I had lived 5 years past total prostate cancer. Three months later, I was diagnosed with tongue and neck cancer. I had canser taken from my tongue(a donor patch from my hip was placed), and I had 1 lymph node removed from my neck. This was Dec 15, 2009. I started 30 double doses of radiation 6 weeks later. It is now early May 2010. There is one spot below the tongue (deep) that still causes great pain when I try to eat. I can eat eggs fried with bacon( I can't chew the bacon, though I love it). There are 2 to 3 other soft things I can handle. The doctors told me that the sore is nerve damage, and may never heal. I have lost over 40 pounds so far. I needed to lose 30 pounds before I was diagnosed, but now, I can't maintain my weight! I am losing 2-3 pounds a week. Do you have any suggestions for food. I have always loved cheese cake! Michael

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I too have been extremely limited in being able to eat food normally. My tongue is still in a lot of pain, most foods still burn my mouth, and I have a great deal of trouble with swallowing due to radiation damage. I have had two dilliations since my radiation ended may of last year. I am still getting most of my nutrition from my peg tube that i have had i n for 14 months. I am trying to gain my 40 lbs back, but it isn't easy when you can't eat much.

Boiled potatoes? Butter and sour cream. Oatmeal. Avocados. Tiny pastina. Pureed beans with garlic and olive oil on a torilla. Bananas. Shakes. Cooked zucchini squash. Cream cheese. I layer a bit of cream cheese on a 6" flour tortilla, add one slice of ham or turkey, and a bit of shredded carrot and lettuce, and roll up. I can't seem to swallow eggs, but if you can what about an omlette? tofu?

I also have an emulsifier and I try to make fruit smoothies when I can. Someone on this site once mentioned a cookbook for dysphagia. I might try it when my mouth can tolerate more foods someday, I hope. I cannot eat bread or cookies aor cake products, or meats at all. I have found about 5 or six things I can sort of eat. I do better eating alone, so I can concitrate. I still choke and gag a lot.

I hope that you have more healing. Keep trying, I know it's tough. I bought tofu, sliced cheese, and truffle oil to try today. I walk thru the store thinking...hmm..I wonder if I can swallow that??? I try one new thing every day or so. I still cannot taste much either. It is frustrating. I had my diet after my treatment all planned out. Hi in fruit and veg, very low sugar and dairy, yada yada. I cannot swallow the veg, the fruit burns my mouth. All I can taste are sweet things, and dairy is the only thing that does not burn my mouth, but actually feels good. I at least went from 88lbs to about 96 with the overnight pump they gave me. I cannot get anywhere what I need by mouth alone.

My father made a huge seafood paella today, and I had to suffer through the smell of popcorn at the movie theatre today, we went to see Iron Man II. Some days are tougher than others. I really wanted paella and popcorn. :( I miss food.

Looking at books I might try:

http://www.amazon.com/Dysphagia-Cookbook-Elayne-Achilles/dp/1581823487

http://www.sourcebooks.com/products/cumberland/cumberland/9781581823486-dysphagia-cookbook.html

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

Sweet, I'm sorry that your mouth is still sore and that you can't eat much. I understand b/c there is still so much that I can't eat due to taste buds being off whack. I would love to eat something chocolate but it tastes really bad. My last trmnt was last Oct (22) and to date there is very little that taste right. Chicken and ribs are what I can eat and actually enjoy, or at least I used to. After eating them and eating them, they're becoming kinda gross but I won't complain b/c at least I can eat something. I pray things will get better for you and all who are suffering with eating. Take care and try to stay positive.
God Bless,
Deb

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Oh man, if I had saliva right now I'd be drooling! Sounds soo good. I have even tried to puree the chicken and it wouldn't go down. I told told my one friend on sunday that I was dying so bad for fried chicken. Like Popeye's fried chicken. I think that going into radiation down one saliva gland did not help, since they fried the other one i had left. Plus I had problems with swallowing before cancer and had my esophogus dialated, (way further down than the stricture from rads damage) back in 2006. Oh well, I will keep trying.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

MM,

Very brief, but you need to learn something about nutrition and diet my friend.

Your survival depends on it.

You have had your second dose of cancer and are eating 'bacon' !! Do yourself a huge favor and go out and buy these 2 books:

1. 'Healing cancer from the inside out' -Anderson
2. 'The China Study' - Dr Colin T Campbell.

As for suggestions for food - Stop eating all Animal products and all dairy products and all processed food. That only leaves you about a billion choices among all the wonderful fresh fruits and vegetable and nuts and legumes.

Who ever has advised you in your treatments needs a change out. Sorry to be blunt but your life is riding on your eating habits. Go learn about it please.

Scam

dwoythal
Posts: 4
Joined: Feb 2010

my husband, Tom, finished radiation and chemo/cisplatin, for base of tongue cancer, lymph node involvement, in early March. He had the feeding tube and used it along with trying to take a little by mouth each day and didn't lose too much weight. We were counting calories, and protein constantly to maintain the weight and the protein for healing. He had the feeding tube removed two weeks ago. His throat is still not good, and he can taste a little, but he's very worried about the lack of saliva. He now thinks his throat will not get any better than it is now and that his saliva won't increase either - are these likely to stay the same?

Now to the foods that worked for us: Jevity via the feeding tube. Myoplex, a high protein drink from the grocery store, was tolerable by mouth. The whole time we made milkshakes, using the Carnation Breakfast packet, 1/2 c. milk, 1 c. of ice cream. He drank four of these a day. I think the Carnation breakfast milkshakes were the best thing we found to keep his nutrition up by mouth.

Ramen soup was a good soup for him. Cheesy Potato soup mix was also good and high in protein. I bought a little book that gave the protein counts and calorie counts and we kept track every day - because he's a big man, the dietician at the hospital said he needed 220 grams of protein a day, 220 oz. liquid and 3000 calories to keep the weight good. We kept that up most of March and April and into this month.

Once the feeding tube came out, we bought a grinder and ground up turkey and chicken, added gravy and potatoes and noodles, all of which he could eat. Last night, I sauted tilapia and that was easy for him to eat. I've been buying canned vegetables and fruits and he can eat them.

The main problem now for Tom is that he had 8 teeth pulled prior to treatment, doctor's orders, and kept his front teeth so he can't chew anything except with the front teeth.

This is my first post but I've been reading all of your posts since early February. Thank you for helping everyone out.

I hope someone can let me know if Tom's throat will get any better than it is now, at almost 3 months post-treatment, and if the saliva is ever likely to come back. He gets the 3-month PET scan in a couple of weeks and I'm glad to have read that if it's not 'clear' it isn't really a bad sign. Also, something that has scared us is that the doctor said if it goes to the lungs, there's nothing that can be done. I can't believe this could be true.

Tom and Deb

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

Tom and Deb, my last rad trmnt was 10/22/09. My mouth was so dry it would acutally make me choke. It took about 5 months for my mouth to be moist enough for me to stop needing water all thru the night. It does get better but it takes a while. About the pet scan, my 3 month showed activity and I had another biopsy only to find out the scan was a false positive. It scared the living he... out of me. So, yes, keep that in mind about the scan. I was told it shows positive sometimes due to leftover radiation and scar tissue.
Good luck and I will keep you both in my prayers.
God Bless,
Deb

slevtov
Posts: 5
Joined: Dec 2008

My husband had the full course of radiation treatment, as well as chemotherapy, in 2004--five years ago--for squamous cell carcinoma of the tonsil that had spread to surrounding areas.

His doctors told him he would get back at least some of his sense of taste, as well as more of the nearly obliterated salivary gland function (which also affects taste). Now, five years later, he realizes that, at least in his case, none of those functions has or is ever likely to return. He cannot differentiate between sweet, salty, bitter, sour, etc. Foods that he once loved, like chocolate, grapes, and roast beef, are no longer enjoyable. Some textures and consistencies are better for him, so that buttery or soupy things are better, while dry foods are nearly impossible. He cannot tolerate cold foods or drinks, nor anything acidic or hot (in the sense of peppery). The only beverage he tolerates is warm to hot water, which he carries around with him all the time, to keep his mouth moist.

His sense of smell is still excellent and unaffected, so at least that helps a little.

Sorry to be discouraging, but it gets pretty frustrating, waiting around for your sense of taste to return, when, in fact, it never will.

Short of stem cell replacement for the taste buds, it would be hard to imagine anything's changing this unfortunate outcome.

On the other hand, he is very much alive, with no metastases anywhere, according to all of the PET/CT scans. (Incidentally, following his radiation and chemotherapy, he had immunotherapy done at Hadassah Hospital in Israel. It was based on lymphocytes from a sibling. And that may be the explanation as to why the cancer has not returned, despite the dismal statistics on stage 4 head and neck cancers).

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am sorry that your husband has to deal with the issues of saliva and taste bud loss. I lost about half of my saliva glands and taste buds. At least my radiation doctor didn't pull any punches and told me what to expect. In some cases individuals are lucky as they might not have gotten as much chemo or radiation. Or their mouth piece might of done its job by not allowing the radiation to hit the glands. But 25 shots of radiation to my face pretty well took those options off the table. Like your husband I am glad to be alive. We are quite opposite in our eating though as I tend to lean towards the spicy foods that I can taste. The real problem is the constant fluid intake that makes a person make regular runs to the restroom. And the pasty feeling that does not make a person want to run around kissing women. Not that my wife would like that anyway. I thank God that someone invented Biotene Mouthwash as it allows me to sleep through the night. Before finding it I would wake up dried out and caughing. Best wishes to you and your husband and I hope you have a great summer. Slickwilly

teddi
Posts: 1
Joined: Jul 2009

Hello everyone,
This is my first visit. My mother (86) just finished 37 radiation treatments to her neck and throat and did pretty well.
She still can't taste anything- except for mustard! and maybe a little chocolate.
Not eating although she can still swallow, she is still getting 4-5 tube feedings of ensure/boost a day.
I know that her taste may never come back completely but I was wondering if anyone had tips about what to try, for inspiration and etc.

She is grateful to be alive but she sure would like to taste something- just wondering if there are any particular foods that she might be able to taste.
I know that pepper and spicy foods are not appealing to her.
Many thanks! My best wishes to all the survivors and caretakers out there.
Teddi

diamond-n-the-rough
Posts: 14
Joined: Jul 2009

teddi: HI my name is JERRY, IN 1999 i began my radiation & chemo treatment on my head and neck.i received radiation dosages twice a day ,once at 7:30 AM and again at 3:30PM. the CANCER CENTER was 26 miles away, and i drove everyday before and after treatment. ON two occassions i pasted out for about 2 mintues, but when I came to my vehicle was still in the road ,about two lanes from the nearest car. THE first thing i say was thank you LORD. SO after completing my treatment i was bed ridden with, no working sweat or saliva glands, dry mouth , a very sore thorat, no tastebuds and four lesions on my brain. I failed to eat or drink any fluids any thing that i ate or drank came back up in less than 1 min. SO for nine month the LORD feed me with GRACE,MERCY, LOVE,CARING AND HOPE ! but as time past i consumed my first meal. IT was egg drop soup, I ate this for 4 days to this day i hate food !

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

Im 7 months past treatment. Things that taste like they used to, and taste good for me , are cheese omellettes with american , vermont cedder and mozzarela mixed together a slice of each. Dunkin donuts coffee , i used to be a coffee snob now only dunkin.
Nathans hot dogs plain without mustard. Mashed potatoes with I Cant Believe Its not Butter. I would always eat only butter now, The I Cant believe it stuff tastes 1000 times better. Cambells Healthy request chicken and rice soups i add extra sliced chicken from the deli all crumbled up and extra veggies. Its out of season but Eggnog was what saved my life i was lucky to go thru treatment during Eggnog season nothing puts on weight like eggnog. I drink alot of milk with everything. I had a sweet tooth but not any more.
All thou i had a piece of tiramasou (sp?) that wasnt bad i think because it had a coffee flavor it was ok.
Plantains fried in the pan with the I cant belive its not butter stuff is my new found eatable enjoyable flavor.
I still keep wanting to get some of the stuff called Miracle Fruit and try it.

Tricia05
Posts: 2
Joined: Dec 2008

Seems like everyone is different with regard to taste buds. I finished treatment in Nov 05 for SCC of the nasal septum. I had surgery, radiation and chemo. I lost my taste with most foods, except hot curries, Thai and Indian, Sweet and Sour Chinese and anything else that is sweet or sour and chocolate. I live in the UK where the national dish is Indian curries so I am a lucky bunny. At first I was shocked but now its kewl, most of the stuff i cant taste is boring anyway, so no loss. Hey you work with what you have don't ya. I am so lucky to be here and enjoy everyday. I have put on a stone and a half in weight, thats about 18lbs lol. But I was skinny to start with, but I would still like to lose some. I doubt I will cos I LUV chocolate now. Other than that my diet is healthy. Good luck with treatment and your taste buds. Tricia

abdulrauf_hafeez
Posts: 11
Joined: May 2009

I am three weeks past treatment. Can't taste sweet or salt. But can taste things like bread (homemade bread, roti, naan), potato fries and eggs. I just talked to my nutritionist. She told me that taking zinc supplements helps restore taste buds. She told me to take a 50mg pill thrice a day for up to 2 months (and no more). Overdosing on zinc can be toxic.

I found a helpful discussion thread on this forum.

http://csn.cancer.org/node/156857

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I too took Zinc post treatments but gave it a month or so to get as much of the Cisplatin (liquid Platinum) out of my system. My Dentist prescibed it. I think it helped a lot. I am about 21 months post-treatments and my tast has recovered to about 95%. Some things taste different than they used to but not bad. My saliva too has recovered well. I am very fortunate and grateful for that.

JK

abdulrauf_hafeez
Posts: 11
Joined: May 2009

Wow, I have been on zinc for 10 days now and I can see and feel some taste buds appearing on my tongue. My tongue surface was completely flat and smooth. Now I can see tiny bumps appearing in the middle of it. The tip and sides are still lacking though. I can't taste sweet yet, but can taste other (salty / sour) foods much better than before.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Try watermelon. I never liked it before treatments but now like it better. One nurse told me that watermelon has been known to help revive tastebuds. Not sure, but worth a try.

Hang in there, I am at almost 2 years out and find my taste is still improving though slightly. It is a long, long process.

JK

abdulrauf_hafeez
Posts: 11
Joined: May 2009

Thanks JK. I love watermelons, esp cold ones. As luck would have it, my wife just cut open a fresh watermelon. Though I can't taste much of the sweetness, I still like the texture. Guess what I'm eating now.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey JK,

I am glad you are out there. I read your profile and your diagnonsis is so similar to my husband. He has stage IV SCC to his right tonsil. We are starting treatment on July 30, He will have 35 rad with three cysplatin over the course. It is encouraging to hear you are doing well. I know he will be okay. He is 55 and also is HPV-16 positive. Any inside info is helpful. I read your PEG 101 and we will have that put in before treatment starts, and that was helpful also. Thank you, God Bless.

Donna

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

But, sorry to find out it is needed. I know when I was first diagnosed and after my first "Pity Party", I was elated to find this Board. So many knowledgeable, experienced, caring people. They really made a difference for me back then and continue to do so now.

As an additional suggestion, did you see an old post of mine about oral care? If not, I will locate it and repost.

God Bless and hang in there.............my best to your Husband. Things will get better over time.

JK

PS: my wife's name is Donna, so he is in excellent hands. I would not be here without "my Donna".

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

If you have not read it, cut and paste in your browser ..

http://csn.cancer.org/node/171697

pookie834
Posts: 3
Joined: Aug 2009

I'm new here but my radiation was over 7/27/09 a seven week treatment each and every morning,I was asking my self the same thing how long before taste buds come back..some told me a year but said each is different and now as of 8/12/09 I finally getting taste back finally. Still a few things can't taste fully, but this morning made me a cheese omelet and a cup of coffee and wow could taste it and felt like it was my first real cup of coffee in about four weeks.So it is coming back. I was diagnosed with throat cancer so it was mostly hard to eat because of the sore throat and swelling. Starting to also feeling more energy to now. I have a feeding tube which helps a lot also. But any questions please feel free to ask k....pookie

Helaine62
Posts: 3
Joined: Aug 2009

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.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

It will all come back in time; I was a vegetating for about 10 years but two months after I finished my radiation for the second time around my wife and children were eating some Popeye’s fried Chicken. I had not tasted anything for about 4 months, so I reached in the box of chicken and took a little small crumb and put it in my mouth. My brain went wild because I was able to test it just a little. Needless to say from that point on I could not pass a KFC or Popeye’s with out stopping.

I only have about 60% of my taste back but that is the best 60% as my body understands that this is the new normal me.

Good luck and God bless; let us how you do when your taste comes back

mentn
Posts: 4
Joined: Feb 2009

Is't it great to have so many helpful SURVIVORS on this board. I am three years post radiation today party at my house tonite!! I had 30 RAD treatment for SCC Right Tonsil could only taste
spicy chinese food the first three months tried to follow doc orders and get lots of protein
Carnation Instant Breadfast and Smoothies felt good going down withing 6 months most taste
were back except for sweet flavors then about 18 months out I tasted chocolate for the first time I rem. that day well. Now 3 years later I have not only gained back the 27 pounds I
lost but 10 extra but it is a joy to be healthy and have taste buds. Good luck to you all.

JGE
Posts: 50
Joined: Mar 2009

Mentn, I love your post. Most of the time I am copying my wife with people on this site saying something went wrong or they had a reoccurance. It is just human nature to think the worst I guess. Sorta expect to be one of the unlucky ones all the time.

I am a month away from 1 year post treatment. I have already past 1 year from the diagnosis date and the first date that I felt a swollen lymph node. I cannot wait until I am at the magic 3 year mark! I have about 85% of my taste back and your comments renewed my hope of getting even more taste. I feel great and have less and less times where I think the worse case scenario.

Thanks for the boost. We are here to stay!!

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

G'day John

Something you might want to try using at night is a mouth spray; it can make the different between and good night and a bad night sleep. There are a lot of different products out there you can try; I use the Stoppers4 Dry Mouth spray I get it on line at www.drugstore.com

PS: I like the picture of the boat, nothing better then being offshore with just the sea and blue sky above.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I like the picture of the Fishs, that’s what I call a really nice day. I grew up on the bay Islands of Honduras and fished everyday, when not fishing I was diving, great place to be a kid. My Son moved to Tampa a year ago, he got married there but had to move back to Lafayette because he could not find any work. I have a 3 day meeting in Tampa next month and can't wait to get there; it is a great place and lots and lots of Food. Now that I can taste I love to eat even if I can’t open my mouth to far I can find a way of getting the food in there.

Take care and keep fishing

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

He works as a Car body repair man right now, but is going back to school, I am glad for him. I work in Louisianan for a diving company and do computerize maintenance on there Diving Vessels, that what I will be doing in Tampa next month.

Don’t think I will get much time to do anything other then work but you never know, my e-mail address is on my post drop me a line and I will let you know when I am there, if nothing else just to meet you in person would be nice.

Take care

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Thanks, I'll do that....more than likely you'll be near places I fish regularly anyways....

barbjean
Posts: 1
Joined: Apr 2010

Hi........

I've never responded however I wanted to share with you that I completed radiation on my throat Sep 23 and have about 75% of my taste back. It's been very gradual so don't give up. It does get better.
Good Luck!

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

I was just reading over this...

Actually now that it has been several months since I last posted, I have made a lot of improvement since September.

I can taste most everything now, although a few things lose taste rather quickly. Some sweet things haven't really came back, but a large variety has. I've pretty much discovered that I can taste most everything as before, just maybe not as intense or long lasting.

I have also gotten a lot of my saliva back, though not entirely. Night still leaves me dry quite often, but not nearly as bad as in the past.

I have improved a ton since the initial post treatment, and I feel that I am still improving in some areas, but it's a very gradual process.

John

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Double posted....

naturenaw
Posts: 26
Joined: May 2009

I lost my taste buds during treatments and especially didn’t like the tinny taste of food (from the chemo perhaps? I had Cisplatin.) During treatments I found the only things I could taste was cheese. It also helped to eat with plasticware and use plastic cups for drinks since silverware magnified the tinny taste.

After treatments it’s been 5 years and I can taste some cheeses, pizza, tacos, spicy things (but I don’t like the “burn” associated with spicy things so I avoid them and ask for my pizza light on the sauce). I found out that there is a new taste sense (besides the original ones I was taught as a kid – sweet, sour, bitter, salty). The newest one found is called umami (mushrooms, asian food, chicken marsala,…) and I can taste a lot of those foods.

Additionally I have found that I enjoy smelling foods. Foods that smell good, almost seem to taste to me. Technically I can’t taste them but they smell so good that I think my brain must be getting fooled into thinking that I can taste it. Cinnamon baked goods are an example – mmm mmmm!

I would imagine my loss by this time, 5 years out of treatment, is probably permanent but I still hold the hope that one day taste will miraculously come back! I try to look at this as a blessing since I am a horrible cook (but my family still has to taste my cooking though!)

I hope you get more of your taste buds back!

fixer9510
Posts: 1
Joined: Apr 2010

Hi ever one my name is Bryan, I have been through cancer treatment, for cancer on my tonsil,tongue and throat. Last treatment was 6 weeks ago and I still can not eat. Food taste like burnt flash to me. I ask the doctor about it and thy say it will take a long time to get my taste back and it will be different than it was before treatment. I have heard that a least 6mo. before you get some taste back even up to 1 year. I have found that for me if i can mask the taste with some kind of a spice it does help but if any one can help me find something else to try I would like to hear about it. THANK YOU. Bryan

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Hi Bryan and welcome....

If you read most of the posts above, you'll see common statements, such as everyone is different for one thing. I didn't really see where you mentioned radiation. Most people tend to lose considerable taste and saliva after radition. As for chemo, I can only speak for myself, and that usually came back within a few weeks after chemo, and it wasn't unlike before treatment. Radiation has changed that for me, nothng much is totally like before. But I can taste 90% of everything that I could before radiation. It's just not as intense and some things lose the taste fairly fast.

I also cannoy speak as of the effects of your cancer treatment concerning your tongue, I had tonsil cancer an d a lymphnode.

Hope you start regaining your taste soon....after radiation, it has taken close to 11 months and I'm just getting the majority of my taste back, even saliva is coming back.

The main thing that I can offer is that it takes a long time to recover.

John

BigMike_LV
Posts: 1
Joined: May 2010

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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I got done a year ago and I am just noticing i can taste a couple of things I could not before. It has been very slow going for me. Most things burn my tongue and taste like wall paper paste. I mostly can only taste sweet things, which I find most palatable. which is strange because I have always hated sweet things before radiation. Even things that do not taste salty to others taste pasty and salty to me.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

It comes back but takes a lot of time, the body is a remarkable peace of machinery in that it was created to be able to heal its self. One thing you might find is that there is what we call a new normal you. I am 5 years passed my last Radiation and Chemo, food is just now really starting to taste very good, the only problem I still have is with sweet things, I can taste them once some times twice and then that is it, I know something is in my mouth but all the taste of the sweetness is gone.

Take cake and welcome to CSN my friend

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

It is exciting that I found someone that I can relate to. I'm a little older then you, 46,
but do feel like a youngster at radiation. They followed the same treatment for my throat cancer. I finish my 35th radiation treatment on Tuesday. I will also have the last dose of cisplatin on that day. My blood count was to low last Tuesday. They put in a feeding tube, but I really didn't start using it for all my nutrition until the salavia started (2weeks)I can still swallow. Because our treatments are so similar I look forward to hearing about your progress.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Hey slick, I finished in Dec. Salt was first back. I could eat anything and all I could taste was the salt. So I ate eggs at first. About 3 weeks after treatment. Then some oatmeal. It is been 5 months now and nothing taste exactly right but not many things taste real ban anymore. It gets better. Good luck to you.

Kurt

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