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Adenoid Cystic Carcinoma - after radiation, how soon do you feel better, tastebuds return?

Kaydub
Posts: 14
Joined: Feb 2011

I had 33 days of radiation, it fried, my mouth, taste buds esophagus, and throat. The last two weeks of treatment were awful. I never had to have a feeding tube, but did need several IV's. Today is my 5th day post treatment, and am wondering when taste buds will return, when my throat won't be so sore. When I will be able to get a good nights sleep. I have read about taking zinc to help with taste buds, but don't know what form or strength, or how often to take it. Also read about taking vitamin B-12. Any thoughts?
I was diagnosed at stage 2 (T2N0M0) but barely into stage 2. I also had my submandibular gland surgically removed with positive margins, thus the radiation. Anyone else gone through this?

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

my radiation was on the hard and soft palate, some of my throat and my sinuses. 30 treatments. the pain began to subside about two weeks out. I never had a PEG tube either. I was able to start eating some soft foods at about 3 weeks and I am able to eat a lot of different foods now, but they don't taste the same. I finished the 19th of November 2010. I still can not eat anything too spicy, hot, or hard. I can't eat anything that requires a lot of chewing or that has any acidic foods in it. I drank a lot of black tea to help aid healing. I had always drank tea when I was sick and I just had to drink it cooler than before. I don't know about zinc to help with taste buds. I think it will mostly just take time and trial and error. sweet came back first for me. especially if I had something sweet that also had a milk based product in it as well, like melted ice cream, or red velvet cake with cream cheese icing (i could taste the icing).
best of luck. you have finished the treatment, but now just like after your surgery, you have to heal from the radiation. I started to do a lot better about 6 weeks out, just like after my surgery.
hugs!

Kaydub
Posts: 14
Joined: Feb 2011

I will try the black tea. My sweet taste buds were the first thing to go, so maybe they will be first thing to return. I do miss occasional chocolate. Thanks so much for your input and encouragement.

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

I think you will find that the answer to your question will vary pretty greatly. I had SCC unknown primary and had a modified radical neck dissection where they took 23 lymph nodes 3 postive, as well as my submandibular salivary gland. Then I had 30 rads.

If you didn't need a peg and managed the whole treatment that is pretty darn good. As you probably know, you do continue to cook for a while after rads and the side effects peak a couple weeks after treatment. It took me quite some time to feel better. I think most people have improvement with eating and feeling a lot better 2-3 months out. Good luck on the good nights sleep. I'm 21 months out and I still don't get sleep. Without that salivary gland and since they fried the rest of me I am extremely dry. Rattle snakes, desert scorpions and dust devils could take up residence in my mouth and feel quite at home. I am having serious issues with my dry mouth and teeth despite using fluoride trays and brushing and flossing like a mad woman. Once the mucous goes away it got mighty dry in there.

I remember someone sending me and article on zinc and taste buds bit for some reason I decided it wasn't for me or I didn't 'buy' it. I will have to check that out again and if you have any links or articles on the zinc I would read them again. Also not sure on the B12. (but there are a few here that know about supplements). The only thing that I take every day is a liquid multi vitamin, liquid immune booster and a heaping Tsp of L-Glutamine in a 16 oz cup of fresh carrot/apple/orange juice. The Glutamine is an amino acid and it really helps with soothing the burn and stinging of my mouth and tongue. You can also put it in water to swish and swallow. Helps in heeling mucosa.

Wishing you a speedy recovery.

Kaydub
Posts: 14
Joined: Feb 2011

Thank you for the suggestions. I appreciate it very much! Will try to L-Glutamine.

Skiffin16's picture
Skiffin16
Posts: 8084
Joined: Sep 2009

Welcome to our "secret club"....

I also had 35 days of rads (also 16 weeks of chemo)...I also didn't have the PEG.

If you are only a few days out, an are feeling good enough to eat, you're doing very well already. Usually (myself included) you are still cooking for about 3-4 weeks post rads.

It's a slow process usually on regaining saliva and taste. I also had Amifostine Injections everyday before rads. It was supposed to help in retaining salivary function. I think it definitely helped me.

But still, it took probably a good 3- 6 months to start getting the saliva and taste coming back in consistently.

I'm now 19+ months post treatment, and I'm a good 90 - 95% back to full functioning taste and saliva flow. I think I'm still progressing also.

Anyways, glad you are done, and more than likely you'll continue to improve for several months.

I had no taste or saliva for a long time. Having to drink a swig of water with each bite of food and if I talked anymore than a sentence or so. I had to carry a bottle of water with me all of the time back then.

Best,
John

Kaydub
Posts: 14
Joined: Feb 2011

Thank you John. I appreciate your feedback. It is so nice to not be going to the daily rads appts. That is so tiring!
Thanks,
Kathy

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Kaydub,
I had 35 rads and didn't have any taste (except for bad taste) or saliva until about week 4. I'm at 6 weeks now and noticing new tastes every day. Saliva is noticeably better each week also. Corn soup tastes good as do mushrooms and anything coconut based. Most stuff just has a hint of taste to it for a brief moment and then disappears. The more lubrication the better. Sleep is so-so. Sipping water and peeing throughout the night cut into it a bit. My best nights occur when I've been able to exercise the most that day. I've never heard about the zinc or B-12. I would be interested to know more though. I'm happy for you to be done with rads. I'm happy for anyone to be done with the rads! Now the healing can start. My best to you,

Bob

Skiffin16's picture
Skiffin16
Posts: 8084
Joined: Sep 2009

I have read and heard different opinions on zinc, but never asked about it or tried it.

I'm to the point (other than at night where I stil wake up a few times to take a sip of water and unrinate), that I'm pretty much fully funtioning bothe taste and saliva wise..maybe 90 - 95% anyways.

Tiring, yes it's very much so...and, I just kept relating to the movie "Ground Hog's Day" during that time.

It was pretty much the same routine, day, after day, after day, after day....well you get the idea. You've been there done that as well.

Best,
John

Kaydub
Posts: 14
Joined: Feb 2011

I am just done with week 3, am having very slight tastes. Also, have the bad taste in my mouth, and saliva not a thick, but still not normal. Seem to wake up some morning with my mouth all glued together. Also, little bumps, or blisters, and mouth sores. Did you have anything thing like that? I did get some zinc lozenges, of course they don't taste good, so don't want to use them.

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

I didn't have little ones, I had the roof of my mouth come off in a sheet. :(

Did you try the LGlutamine? It is tasteless and you just put a heaping tsp in a glass of water and mix til it dissovles and then swish and swallow it. It really helps.

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

My radiologist told me that the radiation continues to kill new cells for several months. As your saliva glands try to heal, they are killed off and you have to grow those cells again. My Dr. said it may take 3-4 cell regrowth cycles to get past the effects of the radiation.
Seems strange but true. I had 36 Rads, and the Rads are what kills the mouth. I have sores for several weeks and couldn't eat anything, not even swallow a pill.
I am taking a pill prescribed by my ENT called Evoxac. It is supposed to help the saliva problem. Seems to help a little, but also makes me pee like a racehorse, especially at night.

Sweetblood has set up a site where you can go and get to other related web sites. She is a fountain of knowledge and a great person. Try to listen to her posts and of course Kiffin too. I am 10 months post treatment and still have eating issues, but each month, not week, it gets somewhat better. This site will give you more help that your Dr's I think.

All the best, and eat up! you now eat to live as opposed to live to eat, as we say here.
Steve

Kaydub
Posts: 14
Joined: Feb 2011

I will give that a try. thank you for the suggestion.
I am sleeping so much better at night. Mouth still dry, but not as bad, can taste a little bit, and at least get food down now. Things are getting easier, but certainly not back to normal.

Would love to hear from someone who has had this type of cancer, and has made it past the 5 year mark.

Skiffin16's picture
Skiffin16
Posts: 8084
Joined: Sep 2009

I can relate to the glue...LOL. I didn't have bumps or sores, just basically everything had no taste other than just bad...even water tasted like sweat. That was discouraging because water is really the only thing thet usually satisfys my thirst.

Even at 20 months out, I still wake with a very dry mouth and throat. Usually getting up a few times during the night, taking a sip of water and using the rest room.

Best,
John

speleorelic's picture
speleorelic
Posts: 9
Joined: Feb 2011

I am 4 weeks out from radiation, had PEG tube removed a week ago (never used it). I had 39 radiation treatments with chemo,, and 9 weeks chemo prior to that. I've been eating solid food for 3 weeks now and not taking any drugs except Advil and/or Aleve. My back gets sore when I get tired. I am trying to eat as much as I can, but my taste just isn't there. Hot spicey foods do me best. And soups seem to go down easiest. I found this spicey corn and shrimp cream soup at the local grocery store that I can eat like crazy,, and is full of calories. I keep on eating these chocolate chip cookies,, they look so good, but can't taste sweet at all. I miss sweet so much. Shakes and smoothies go down very well. I've begun to drink coffee again, and I have to put 4 sugars in a cup,, which makes it taste normal to me,, but can't taste sweet,, ?? Anyway:

As for sleep. My Dr gave me Ambien 12.5 MG. It is so wonderful to sleep the whole night. It does not matter how many times I have to pee,, (about 4), or if I take a nap during the day,, or how much exercise I get (walking a mile or two every day). I can sleep from about 9 or 10 pm till 6 am every night now. And I feel so much better all day long. It really does help me.

good luck

George

Hondo's picture
Hondo
Posts: 5778
Joined: Apr 2009

That is great to hear you still had some of your taste after treatment and you got your PEG removed so soon. Hang in there and please continue to be part of the Family here on CSN.

All the best to you.
Hondo

Hondo's picture
Hondo
Posts: 5778
Joined: Apr 2009

Glue would be sweet if I could have tasted it during treatment and for months after my second round of Rad. Even water tasted bad for some reason but I knew I needed to drink it, sometimes the wife would have to force me to drink water if I did not have enough that day. It took a log time for taste to come back again, its not 100% but it is my new normal and I enjoy what taste I have.

All the best
Hondo

priyamuk
Posts: 1
Joined: Aug 2011

Hi,
My father underwent 30 days of radiation after surgical removal of a benign tumor. Doctor advised radiation as the tumor had recurred although biopsy report showed that it was benign. He has lost taste and his mouth is completely dry. Just wanted to know if this is permanent or will the taste come back and the dryness will gradually reduce? if so, how much time is it going to take?

Skiffin16's picture
Skiffin16
Posts: 8084
Joined: Sep 2009

Welcome to the forum, great people here....

OK, the standard reply..."Everyone is different"....

Most people regain some portion, some more than others... It's a very slow process.

I'm just over two years post and have regained nearly 90 - 95% of both taste and salivary function..still a little dry during sleep.

STGIII SCC Tonsils and a lymphnode, HPV+..January 2009.

Mine started back slowly a few weeks after treatment, and continued to improve for the better part of that two year period.

Hoping that your fathers will improve also.

Best,
John

Sir Viver
Posts: 1
Joined: Oct 2011

It's been six years since my squamus cell carcinoma stage 4A, I had 6 weeks of 25 minutes radiation along with a few splashes of chemo. My taste buds finally came back but I can't eat anything spicy and even catsup heats up my mouth and tongue. It beats the alternative but I really miss hot, spicy food. Any remedies I'm missing??

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Sir, welcome to the forum and glad you posted. It's always great to hear of long-term survivors. I'm a year and a half out of treatment with about the same treatment, plus a partial neck dissection. That's an interesting question at your stage of recovery. I can take a little spice now, a little heat, but I couldn't take a bit for well over a year. My tolerance seems to be improving, Mexican food being my measuring tool. I've wondered if, after healing, a person might be able to increase the tolerance by beginning with just a tiny bit of spice, then increasing it? I don't know if you can train taste buds. I hope it improves for you.

best, Hal

Hondo's picture
Hondo
Posts: 5778
Joined: Apr 2009

I too can’t handle hot pepper and the bad thing is that I grow hot peppers, but what I been doing is to blend a special pepper just for me. It is not hot but has a lot of hot pepper flavor just like the hot ones, it is part of my Hondeaux Habana Peppers.

Wishing you well and welcome to CSN

Hondo

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Reminded me of an incident right after I got married which was apx 3 years after I completed treatments. My wife loves to cook cajun food (yes Hondo she too is a **** azz) and I think she thought I was just being, to quote her, a "turd" because I wouldn't eat some of it. She would hide some normal spices I don't care for in food and then because I didn't say anything (hey I was a newly wed) just assume it was all in my mind. Well one day she fixed a meal and put in some very very spicy peppers. Those of you with dry mouth know that at times things stick and you simply can't get it out. Well that happened to me and it would not stop burning and it actually was starting to hurt, water, milk, cat piss, toilet water, nothing would get it loose. I finally just had to get a damp cloth and wipe out the inside of my mouth to get rid of it and it did blister the inside of my mouth.

The bad thing is that before cancer I loved spicy food and peppers and still miss them to this day.

After that she started preparing a "his" (wimpy) and "hers" (liquid fire) meals.

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

Omg. I about choked on my rice! Lol.

I was never one that liked or could tolerate hot foods, so I don't miss it now at all. I cook with, and love, a lot of herbs and spices, because I don't like 'bland food' but I cannot use salt or pepper because it burns. Course my tongue still hurts two and half years later, so I'm not a good measure. 'Normal' people might think my food lacks seasoning because of the lack of salt and pepper, but my best friends never used it either, so they don't mind.

I managed to make an enchilada sauce from a roasted poblano and two roasted bell peppers. It was still hot to me, but it was tolerable and not unpleasant for me to eat.

I hope it gets better for those that struggle and you may some day, be able to eat what you like.

Hondo's picture
Hondo
Posts: 5778
Joined: Apr 2009

Sweet my wife makes some of the best enchiladas in the world, now after all my treatment I can hardly taste them. But somehow I make my mind remember how they uses to taste and I am not sure but seams like I tastes them and just eat them up. Not sure if I am tricking my mine or if I really taste them, I don’t care as long as I get the feeling.

Thanks
Hondo

Hondo's picture
Hondo
Posts: 5778
Joined: Apr 2009

Nothing like a good Cajun Wife with the hot stuff at Gumbo time. Thanks for the laugh I am still picking myself up off the floor

Can’t get Gumbo in Mexico but you can get Fire Hot Peppers :+))
Hondo

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

I understand to be highly variable. My radiation treatment was 13 years ago. The day I lost all sense of taste was the most distressful of my entire treatment. Dry mouth was a very significant problem at the end of treatment, but I didn't end up with a tube. I lost tons of weight just because food didn't taste like, anything....

For me, the taste came back very gradually, and some of that was not much fun. Foods tasted, but they tasted wierd. The first thing I could taste at all was vanilla, so I ate lots of cookies and drank tons of milk for awhile:) Over the years, my sense of taste completely normalized. But it did take years, maybe 4 or so. The last things I could eat and say they tasted the way I remember them were citrus fruit and chocolate. Don't ask me why.

Saliva continued to improve for many years for me. I stopped carrying water eventually, and havn't been awakened at night by dry mouth for many years now.

Unfortunately for me, I have another malignancy now, and am preparing to do this all over again. But the field of irradiation will be much more restrictive this time, so maybe my experience will be diffferent.

Hondo's picture
Hondo
Posts: 5778
Joined: Apr 2009

One of the fears of having cancer is having it again, in my case my NPC cancer came back 3 times. I like everyone hope it is gone for good. Just remember you whooped your cancer azz 13 years ago and you can whip it again.

Wishing you all the best in the fight to come.
Hondo

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