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Still Hoarse.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

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

 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

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.
Billie

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Thank 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 

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

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

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

Better late than never, huh?  Laughing

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" Wink)

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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"

 

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

My best food experience soon after treatment was going to an Oriental buffet....you can switch foods every two bites!! Laughing  it was wonderful!  Got any buffets near you?

p

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

Wifey304
Posts: 2
Joined: Jan 2013

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?

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

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

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

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

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

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

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

 

 

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

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

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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 !

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

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"

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

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

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

So ..... are you saying there is something wrong with eating 1/2 gallon in two days ??? jk  Laughing I don't like it now by itself but I have found it still taste pretty good melted in a Dr. Pepper !!  The onc dr. told me to drink whole milk because I needed the fat .... so I figure ice Cream has even more fat so I have been drinking 2 small floats a day and I think that is what's helping me to not lose weight as fast now.

Peggy

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I bet they can come up with something that will help you. I have seen people talking on an older post on here about something some doctors give you at the same time as tx called Amifostine to help protect your S. glands also something called Salagen that helps after tx. I googled Salagen because I was going to ask my Dr. for a Rx but it listed so many side effects that I'm not sure that I want to try it. Some on here said they couldn't take it because of the side effects and another said they only had one and that was sweating so who knows ? I hope they come up with a plan for you that helps .

Good luck , Peggy

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

It might help with "regaining", some salivary function..."eventually"... It isn't instant protection. You still lose your taste and saliva for a long time... I had it... The best thing for sure that seems to be "instant", is in the lack of the thick mucous and phlegm.

That is the main purpose, or was for me...

The potential to regain some saliva is just a bonus...

JG

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Ok Thanks for the info JG, evidently my doctor doesn't use it because he never mentioned it to me. The thick mucous and phlegm was my worst problem in the beginning , it is better now. It comes and goes. I almost think a little mucous in my throat is better than when it is so dry.

peggy

 

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Cause there ain't no one for to give you no pain....

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I happen to know Dewy Bunnell from the Band America.....I'll have to tell him that we H&N patients have a new theme song! Haha
He's a nice personable guy, he'll get a kick out of it.
Billie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Very cool...Billie (the girl).

 

Growing up and being a teen in the late 60's early 70's (I was born in 1954), America was always one of my favorite bands...

LOL, even now, my iPhone has Pandora (a music app similar to XM/Sirius only free)..., anyways America is one of my favorite saved channels.

 

Please tell him that I said "Thank You", they have provided decades of great memories and music to me...

 

Thanks,

John

 

 

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

T,

 

I have more trouble with tasting ice-cream than anything else (cat is out of the bag).

 

You will simply have to be on top of your game when it comes to fighting side effects of treatments.   The one good thing I did was get myself psyched up about swallowing and drinking lots of water.  Thanks to the informal push I received from the H&N warriors, I drank and swallowed till I was blue in the face.  Mind you I still went through a period of whispering, but my swallowing was (almost) flawless.

 

Silence is (not) golden.

 

Matt

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Nor Does Cancer.....

The swallowing has been on the radar since day 1 joining here. I already drink a good amount of liquid during the day. Mostly hydrating drinks... Powerade Zero (no sugar) and Gatorade H2... At least 64oz or more.  I don't know if I want my face to turn blue but I'll keep that up as long as I'm able! Ohhh ice cream, ice cream... I am going to miss you so! :(  It's said if you love someone, you have to let them go... perhaps that's the case with ice cream. I'm afraid Breyers will lose a few points on the market when that happens ;)

On a side note... I had, for the most part, limited the circle of friends and family that knew about the cancer. After discussing things with my partner, family and friends, and at their urging and suggestion, I've made my struggle public to my fan base via email and my contacts on Facebook. My close friend and singing partner is organizing a fundraiser for the end of February. The response has been overwhelming and positive. So along with liquids, I'm swallowing pride as well and reaching out for help. With the prospect of being out of work for a long period of time as well as unanticipated bills and expenses, any little bit helps.

"T"

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