Adenoid Cystic Carcinoma - after radiation, how soon do you feel better, tastebuds return?
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?
Comments
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radiation
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!0 -
Hi there. Welcome to our little club.
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.0 -
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.ekdennie said:radiation
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!0 -
35 Days of Rads
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,
John0 -
help with recoveringsweetblood22 said:Hi there. Welcome to our little club.
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.
Thank you for the suggestions. I appreciate it very much! Will try to L-Glutamine.0 -
help with recoverySkiffin16 said:35 Days of Rads
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
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,
Kathy0 -
4 weeks
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,
Bob0 -
ZINCadventurebob said:4 weeks
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
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,
John0 -
that is encouragingadventurebob said:4 weeks
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
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.0 -
Little bumps, blisters and mouth soresKaydub said:that is encouraging
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.
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.0 -
Taste and Salivasweetblood22 said:Little bumps, blisters and mouth sores
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.
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.
Steve0 -
GlueKaydub said:that is encouraging
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.
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,
John0 -
sleepSkiffin16 said:Glue
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
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
George0 -
The taste of GlueSkiffin16 said:Glue
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
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
Hondo0 -
Hi Georgespeleorelic said:sleep
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
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.
Hondo0 -
L glutaminesweetblood22 said:Little bumps, blisters and mouth sores
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.
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.0 -
Query: Tastelessness and dryness of mouth
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?0 -
Standard Replypriyamuk said:Query: Tastelessness and dryness of mouth
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?
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,
John0 -
Still can't have spicy food......darn itSkiffin16 said:Standard Reply
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
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??0 -
SpiceSir Viver said:Still can't have spicy food......darn it
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??
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, Hal0
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