Still Hoarse.
I am so glad that I stumbled onto this site ! Just wish I had found you guys about 6 months ago . This is my first post but I have been reading some of your post for a couple of weeks . I had almost givin up on ever being able to taste food or have any salava again until I started reading some of your post ! My Cancer Doctor told me he didn't know when or IF they would ever come back ! I have SCC and I first found it on my scalp in June of 2012. I had Mohs surgery in Dec.2011 and was told that the Margins were clear. Then in April I found a small lump on my neck. I had neck surgery in July. He removed 3 Lymph Nodes and the report came back clear ? Anyway all three Doctors said it would be best if i had radiation so I did and I had my last tx Oct. 26th.I have had a lot of the same symptoms that you all have had but I am slowly getting a little better but I'm a little worried about still being hoarse. Were any of you guys still hoarse three months after treatments ? P
Comments
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Off and On...
Welcome....
I think a large majority have had or were hoarse off and on many times the first year or so post Tx... So at a few months, you fall right in line.
More than likely you'll start to see improvement on both taste and saliva in the next few weeks..., or months. Unfortunately our milestones seem to come more in weeks and months versus days and weeks...
Best,
John
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Hello PSkiffin16 said:Off and On...
Welcome....
I think a large majority have had or were hoarse off and on many times the first year or so post Tx... So at a few months, you fall right in line.
More than likely you'll start to see improvement on both taste and saliva in the next few weeks..., or months. Unfortunately our milestones seem to come more in weeks and months versus days and weeks...
Best,
John
Welcome to our little playground :-)
I'm happy to hear you are done with treatment, woohoo!
Although my cancer was SCC of my vocal cord area so it makes sense for me to be hoarse but I thought I'd let you know that I finished treatments in the beginning of July and I'm still very very raspy. I just saw my onc last week for a check up and he said even those who didn't have vocal cord cancer but had some other form of H&N cancer tend to be very hoarse. Some tend be hoarse for longer than others but it doesn't usually indicate problems or that it will always be that way. I guess what I should say, is just what John said....measure improvements weekly and monthly not so much daily.
Good luck to you.
Billie0 -
off and onSkiffin16 said:Off and On...
Welcome....
I think a large majority have had or were hoarse off and on many times the first year or so post Tx... So at a few months, you fall right in line.
More than likely you'll start to see improvement on both taste and saliva in the next few weeks..., or months. Unfortunately our milestones seem to come more in weeks and months versus days and weeks...
Best,
John
Thank you so much John for your quick reply. I guess I am just worring to soon , but I lost my voice at the beginning and have been hoarse ever since I got my voice back. My Doctors have told me very little in the way of what to expect. I have learned so much on this site and am so grateful for it and all of you . I sure hope you are right on the taste and saliva improvement , because I love to eat ! I have lost 50 pounds and could stand to lose another 30 but I am trying very hard to maintain. The only good thing about all of this so far is my loseing weight !!I have never drank or smoked so eating has always been my only vise. Thanks again, Peggy
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what did you say?
peggylulu,
I am 10 months post and still have some difficulty with speaking. I find that I am very selective on what I say as there appears to be a definitive number of words for me before I get tired of talking. Some times I sound as normal as before cancer and other times it is with a deep voice or raspy voice. It is almost schizophrenic not knowing who is going to come out. It is getting better, I make sure I always have my glass of water at the ready when making phone calls or speaking in groups.
My taste buds took a 7 month holiday (they were upset about the radiation), but they surprised me and are now trying everything (with some luck).
Anyway, welcome, welcome, welcome to the place where everyone “gets it” when you mention anything about H&N.
Best,
Matt
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Thank you Billie, I just sawBillie67 said:Hello P
Welcome to our little playground :-)
I'm happy to hear you are done with treatment, woohoo!
Although my cancer was SCC of my vocal cord area so it makes sense for me to be hoarse but I thought I'd let you know that I finished treatments in the beginning of July and I'm still very very raspy. I just saw my onc last week for a check up and he said even those who didn't have vocal cord cancer but had some other form of H&N cancer tend to be very hoarse. Some tend be hoarse for longer than others but it doesn't usually indicate problems or that it will always be that way. I guess what I should say, is just what John said....measure improvements weekly and monthly not so much daily.
Good luck to you.
BillieThank you Billie, I just saw my ent onc on the 15th and I told him I was concerned about being hoarse and all he did was to tell me he could do some kind of scope through my nose and I said maybe next time and then today I was thinking I should have let him do it ! Thanks to you guys I feel better about it now so maybe I will have a good nights sleep tonight . Thanks again , peggy
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What did you say ?CivilMatt said:what did you say?
peggylulu,
I am 10 months post and still have some difficulty with speaking. I find that I am very selective on what I say as there appears to be a definitive number of words for me before I get tired of talking. Some times I sound as normal as before cancer and other times it is with a deep voice or raspy voice. It is almost schizophrenic not knowing who is going to come out. It is getting better, I make sure I always have my glass of water at the ready when making phone calls or speaking in groups.
My taste buds took a 7 month holiday (they were upset about the radiation), but they surprised me and are now trying everything (with some luck).
Anyway, welcome, welcome, welcome to the place where everyone “gets it” when you mention anything about H&N.
Best,
Matt
Hi Matt , I feel like I know you already ! I pretty much have been hoarse all the time , I guess that's better knowing WHO is going to come out ! Yes I carry water around with me every where. I get so dry every time I try to talk to anyone so I try not to say much and that is hard for ME !! haha I love this place so you will probably see me here very often . Thank you again for you reply . Peggy
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I'm glad you found this site, too!!
Better late than never, huh?
I didn't have any horseness so I can't help there....but like so many others, I still have little saliva, and my tastebuds are only awake for the first 3 bites of food. You just finished radiation in October, so it'll be a little while before you really taste food. All the healing we do happens in degrees.....not so much you notice in 7 days, but in a month you'll be thinking "wow, this is a little better!!"....
Glad you joined the board.
p (yep....another "p"
)0 -
YES , to better late thanphrannie51 said:I'm glad you found this site, too!!
Better late than never, huh?
I didn't have any horseness so I can't help there....but like so many others, I still have little saliva, and my tastebuds are only awake for the first 3 bites of food. You just finished radiation in October, so it'll be a little while before you really taste food. All the healing we do happens in degrees.....not so much you notice in 7 days, but in a month you'll be thinking "wow, this is a little better!!"....
Glad you joined the board.
p (yep....another "p"
)YES , to better late than never ! I am exactly like you nothing taste good after the first three bites , I have found that it helps a little to eat a bite of one thing and then eat a different food for the next bite. Thank you for your welcome to the board ! the other "p"
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Peggy.....peggylulu said:YES , to better late than
YES , to better late than never ! I am exactly like you nothing taste good after the first three bites , I have found that it helps a little to eat a bite of one thing and then eat a different food for the next bite. Thank you for your welcome to the board ! the other "p"
My best food experience soon after treatment was going to an Oriental buffet....you can switch foods every two bites!!
it was wonderful! Got any buffets near you?p
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We were told
Welcome Peggylulu- Glad you stumbled upon us
We are almost done with tx 4 rads left. Jeff's dr said sweet takes about a year to come back. It's the one who holds the gruge against you. Salt comes back first, than spicy and sour. So maybe knowing that picking foods that are geared to that taste might actually taste good.
Sue
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Pphrannie51 said:Peggy.....
My best food experience soon after treatment was going to an Oriental buffet....you can switch foods every two bites!!
it was wonderful! Got any buffets near you?p
Funny you should mention Oriental Buffet because I have been thinking about going to one . There is only one here and one Fish buffet on Friday nights but that doesn't sound as good as the Oriental ! I will try it soon ! Peggy
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sweetssassysrice said:We were told
Welcome Peggylulu- Glad you stumbled upon us
We are almost done with tx 4 rads left. Jeff's dr said sweet takes about a year to come back. It's the one who holds the gruge against you. Salt comes back first, than spicy and sour. So maybe knowing that picking foods that are geared to that taste might actually taste good.
Sue
Sweets have been my favorite foods all my life and meats come in second and now I don't like anything that has sugar in it and meat is to dry to swallow. I have lost 55 pounds and could stand to lose another 30 so I'm thinking if it takes me a year to start liking sweets maybe I wont gain my weight back this time !! You are right about salt and spicy but for some reason dill pickles and corn were the first food to even begin to taste normal. I have been thinking about trying spicy and am planning on going to a China Buffet soon. I tried pickles and Olives soon after tx were finished because my onc said that sour things might help get my taste buds to start working. He said to eat Lemon Drops but thay burned my throat and made me cough more. I guess what works for one doesn't always work for another. Thanks for the info and your reply . Peggy
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Taste & Hoarseness
In November 2011, I had de vinci robotic surgery and my epiglottis was removed, along with lymphnodes in my neck. The nodes came back benign so I avoided Chemo or radiation...I lost taste soon after surgery and was very hoarse for a long time. My vocal cords were bowed from the surgery and I went to a speech theripest for months to correct them. Exercise and voice erercise brought them back clear and strong..I'm now 1 year, 3 months out and things seem to be okay
I love the fire truck, my Son is a fireman/medic for the city of Columbus, Ohio...welcome
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Sweets..peggylulu said:sweets
Sweets have been my favorite foods all my life and meats come in second and now I don't like anything that has sugar in it and meat is to dry to swallow. I have lost 55 pounds and could stand to lose another 30 so I'm thinking if it takes me a year to start liking sweets maybe I wont gain my weight back this time !! You are right about salt and spicy but for some reason dill pickles and corn were the first food to even begin to taste normal. I have been thinking about trying spicy and am planning on going to a China Buffet soon. I tried pickles and Olives soon after tx were finished because my onc said that sour things might help get my taste buds to start working. He said to eat Lemon Drops but thay burned my throat and made me cough more. I guess what works for one doesn't always work for another. Thanks for the info and your reply . Peggy
Sweet was the very last to return for me..., took two years to get the taste for ice cream back... One bite an the flavor was gone..., now it's totally back.
Meats are still a favorite, but pork is usually pretty dry... Most everything else is good to go though...
Hang in there,
John
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Hello. I recently joined thisphrannie51 said:I'm glad you found this site, too!!
Better late than never, huh?
I didn't have any horseness so I can't help there....but like so many others, I still have little saliva, and my tastebuds are only awake for the first 3 bites of food. You just finished radiation in October, so it'll be a little while before you really taste food. All the healing we do happens in degrees.....not so much you notice in 7 days, but in a month you'll be thinking "wow, this is a little better!!"....
Glad you joined the board.
p (yep....another "p"
)Hello. I recently joined this site. I am caregiver to my husband who was diagnosed with Stage 3 Oropharangyeal cancer. 3 centimeter tumor but no lymph involvement. Anyway, he is in week 4 of treatment. 5 days weekly radiation and chemo 1 time per week. He is experiencing bleeding sores in his mouth. Wondering if this is par for the course or does he need to go to emergency? Have you ever experienced this and if so what was the solution?
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SWEETSSkiffin16 said:Sweets..
Sweet was the very last to return for me..., took two years to get the taste for ice cream back... One bite an the flavor was gone..., now it's totally back.
Meats are still a favorite, but pork is usually pretty dry... Most everything else is good to go though...
Hang in there,
John
Awww man , ice Cream was my favorite and I ate it almost every day !! Well I will just be happy if my taste comes back , even if it's a year or two ! On the up side if it takes me a year or two to get my taste back for sweets back maybe the weight I've lost will stay off !!!
Thanks John
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Taste and HoarsenessGrandmax4 said:Taste & Hoarseness
In November 2011, I had de vinci robotic surgery and my epiglottis was removed, along with lymphnodes in my neck. The nodes came back benign so I avoided Chemo or radiation...I lost taste soon after surgery and was very hoarse for a long time. My vocal cords were bowed from the surgery and I went to a speech theripest for months to correct them. Exercise and voice erercise brought them back clear and strong..I'm now 1 year, 3 months out and things seem to be okay
I love the fire truck, my Son is a fireman/medic for the city of Columbus, Ohio...welcome
Hi Grandmax4 , I take it you are a grandma too !! Thanks for the welcome ! I just wish I'd have found this site before I started my tx ! Every one on here is so helpful , knowledgeable and encouraging ! The Fire Truck belongs to our local Dept. We use it for Parades. My husband has been a Volenteer fireman for over forty years ! My Son works for the City as a paid Fireman and is a volenteer also !
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Welcome WIfey...Wifey304 said:Hello. I recently joined this
Hello. I recently joined this site. I am caregiver to my husband who was diagnosed with Stage 3 Oropharangyeal cancer. 3 centimeter tumor but no lymph involvement. Anyway, he is in week 4 of treatment. 5 days weekly radiation and chemo 1 time per week. He is experiencing bleeding sores in his mouth. Wondering if this is par for the course or does he need to go to emergency? Have you ever experienced this and if so what was the solution?
It's not uncommon....
Probably not an emergency room issue, as long as it's under control...
But things like that should be communicate to your MD's.. I'm sure they can offer something to help.
Also the many here that have had similar... I know many talk highly of L-Glutamine.
Someone will post you up some information soon, I'm sure..
Best,
John
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My Mouth is a Desert on a Hoarse With No Name
Frankly, the thought of having dry mouth and being hoarse for so long has me rattled. My friend, who underwent this glorious course of treatment has had very little effect on his singing voice. His saliva is at about 50% 18 months out of Tx. I can only hope my outcome is the same or better.
I'm taking solace in that taste will come back eventually but am saddened that my love of ice cream may be a thing of the past for a while
With the advice of many here I've written the team about discussing ways to preserve saliva production. They're fully aware of my music background and situation and I trust they have that in mind concerning my treatment. "T"
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I'm an icecream addict, too....fishmanpa said:My Mouth is a Desert on a Hoarse With No Name
Frankly, the thought of having dry mouth and being hoarse for so long has me rattled. My friend, who underwent this glorious course of treatment has had very little effect on his singing voice. His saliva is at about 50% 18 months out of Tx. I can only hope my outcome is the same or better.
I'm taking solace in that taste will come back eventually but am saddened that my love of ice cream may be a thing of the past for a while
With the advice of many here I've written the team about discussing ways to preserve saliva production. They're fully aware of my music background and situation and I trust they have that in mind concerning my treatment. "T"
and tho the yum yum taste is gone in three bites, I don't seem to have a problem finishing my bowl.....LOL. I have to let it sit a bit to warm up to get the most out of it...but I have quit having it on hand at all times, cuz I'll eat a half gallon in two days.
p
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