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Lost My Voice

Joanielo's picture
Joanielo
Posts: 47
Joined: Oct 2012

Hi,
I am starting week 5 of treatments for tonsil cancer. I just lost my voice. I do not remember reading that this might be a sympton. I am so worried and really hope that this is just temporary. I did notice lots of throat swelling over the 4 day treatment break.
Did this happen to any of you? Did you get normal voice back? I need to reach my dr today! Thank you!

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

Don't panic. I didn't completely lose mine, but came close. And what came out was so distorted, and painful that I stopped talking altogether. This lasted a couple of months after treatment ended for me.

Pat

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Joan,

Everything Pat said. It just became easier to not talk for a short while. I never knew if the voice coming out was going to be a whisper, frogman or normal (frogman is just about retired). I still have my trying moments, but if I get prepared I can talk on phone just fine. So, for now rest and put up with your ‘interesting” new voice, but realize it might get worse for a while, but will come back (you still have a few weeks of zap left).

Keep swallowing and drinking lots of water.

Best,

Matt

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

many of my local friends at some point in treatments lost their voices to some degree. i lost mine gone for 9-10 weeks, i used a child's magna doodle to talk... it was paperless and easy. as an extra the pen was attached and never lost.

mine happened in the third week and came back very slowly about 6 weeks post treatment.

john

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

I too lost my voice almost completely. I finished rads at the beginning of July and I still sound very raspy however my scc was vocal cord. In my case they say I will sound much like Demi Moore when I'm totally healed. But I'm here and I'm NED!!!
Just rest your voice for now.
Billie

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I think that losing your voice or coming close is fairly common...

I know that I would lose mine in and out through the days for several weeks. Like mentioned, it was pretty raspy and bronken also.

Best,
John

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

I lost my voice and my throat wasn't even the primary spot they were radiating! It is so frustrating though. By the time I lost my voice though my mouth hurt bad enough that I didn't really want to talk. I just carried a pen and paper around with me to communicate. The only thing that made me sad was that I have a very young daughter & she did not understand why I couldn't talk to her. It will come back. You may feel like you don't sound like your old self for a while. I am 6 months out from Rads and have felt like my voice is finally back to normal just within the last month or 2. Hope you have a quick recovery!

ggpierce's picture
ggpierce
Posts: 30
Joined: Oct 2011

Me too, after about week 3 I lost it completely. Couldn't say a peep. Guess my wife liked that! It stayed gone for a month, then came back. Even now I have a hoarse voice, and sometimes get a little squeeky. I never know what's going to come out of me.

I am a speaker for the ACS Heroes of Hope program, so it gets a little frustrating from time to time.

All in all, I can't complain.

ditto1
Posts: 634
Joined: Mar 2012

but it was so distorted I had my wife or friends oder our food at drive ins or handle phone conversations. My voice is much better now and I can handle lengthy conversations, I just have to slow my talk and so far so good. Although my voice is still to me much different than before dx.

tackstrip
Posts: 14
Joined: Oct 2012

I start my radiation treatment for my tonsil cancer tomorrow. My voice started going after getting 6 teeth pulled last week (17th). But I believe it is the tumor around tonsil that is causing voice going. Mine is a unoperable  stage 4 that has spread to lung. Been reading here for a couple months but first post. Im at a very good medical cancer center in Ann Arbor. Just hoping they can shrink tumor as tonsil, carotid, and jugular are all involved. Just 4 weeks radiation to start then maybe chemo. Wish me luck. Wayne 

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Hi Wayne,

 

Welcome to the H&N forum, but I am sorry you passed the entrance test (cancer).

 

I invite you to start a new thread where everyone might get a chance to meet you.  The problem with posting to these older threads as not very many participate (again) and you end up being overlooked.

 

I am 9 months post from stage IVa, scc, bot, hpv+ and have been treated with surgery, rads and chemo.  I had someone today ask about my voice (it comes and goes).

 

Best,

 

Matt

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I was STGIII SCC Tonsils, HPV+, with a lymhnode involved...

I received nine weeks (three week cycles) Cisplatin, Taxotere and 5FU, then an additional seven weeks of concurrent weekly Carboplatin and 35 daily rads sessions.

They took the tonsils out first thing, but opted to leave the tumor for the same reasons you stated, mainly location. They were hoping that the treatment would either shrink, dissolve or have no effect on the tumor.

For me I was lucky, the tumor completely disappeared mid-way through the third cycle, confirmed by a CT, and never appeared again.

Hopefully similar will happen for you..., and they can get the lungs under control as well.

Thoughts & Prayers ~ John

 

 

tackstrip
Posts: 14
Joined: Oct 2012

That certainly is encouraging news John. Thanks to everybody for your support and encouragment. Going to take a 5mg valium before I go just to calm nerves.  Will try to report back later this evening on how things went. Just trying to absorb all this last minute advice. Thanks again. Wayne

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Coming your way Wayne...

BTW, I was Dx and Tx in 2009....

Hang in there, nothing is an absolutely, and there are many survivors here to back me up...and we got your back Wayne.

Best ~ John

tackstrip
Posts: 14
Joined: Oct 2012

Well made it through 1st treatment on friday. Uncomfortable but not to bad. But couldn't do it today. Had to say no. Felt bad. It was early in morn and just to much phlem or stuff in throat that couldn't lay down and still breath. Between mouth guards, phlem and mask just to much. Will try again monday in afternoon. Now I have to hope my throat is clear enough. Took valium to. But I have hard time sleeping because of same problem. I am constantly doing sinus rinse's to get rid of stuff. Doc said could take sudafed also, though not sure when. Wish me luck. Wayne

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I can relate.. I had a fair amount of anxiety the nine weeks of chemo treatment leading up to the seven weeks of concurrent with rads...just knowing the mask was waiting for me, LOL.

I was prescribed Xanax, and that worked pretty good for me to take the edge off.

I started cutting them in half each day, and by the end of the first week, no longer needed them.

I only had the mask though, no additional mouth guards.

I'd communicate with your MD's and find some solution to get you through the rads....they are important, and staying close on schedule is as well.

Hopefully you guys can work it out, and finish up treatment, putting it all behind you.

Best ~ John

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

Jeff started losing his voice at the beginning of week 3, he is very raspy and needs a drink sometimes to talk. This is very hard for him he can really talk.  But from what I hear it's just a symptom and will come back.

Sue

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

I did not have chemo nor radiation, had surgery by de vinci robot, to remove my epiglottis...my voice went to a quiet whisper for about 8 months...my speech theripist worked with me and one day it was just back, clear and strong.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

I actually caused a scene at the rad center at the start of week #2. Went in demanding to see the rad Dr, and the rad Teck did not take me serious enough, I guess- I was delaying them from starting my rad session. I went into a room, she followed,  then I turned and slammed the side of my fist down on a counter top, pointed at her, and demanded to see the Dr. She promptly agreed to this, and within a minute the rad Dr came into the room, settled me down with assurances that my already-impaired voice would come back. She was right. Liquids and humidity do help, but reduced to whispering is very common.

 

kcass

tackstrip
Posts: 14
Joined: Oct 2012

Well its been almost 3 months since I last posted here. Made it through my Radiation Treatment. It got tough, voice did get a little better  month back but now I am at whisper again. I feel like I can't catch my breath when I try to talk to some one. Like something not working right. Starting to get the mucous build up again to. But I am eating pretty good again. Go for PET scan next week just to see where were at. Then maybe start me on chemo for the spots they found on lung in November. Just looking for an ear.

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Hoping all will be resolved and a game plan establishe from the PET.

Have yo communicate with your MD's concerning your current issues?

Best,

John

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Greetings, tackstrip Embarassed  The good people on this forum have wonderful ears and it would be easier to find them by starting a new thread.  I am glad I scrolled all the way down on this old thread or I would have missed your post.  It seems as though you have made some positive progress since you posted here 3 months ago.  Sending wishes for the best of outcomes as you continue with treatment. 

tackstrip
Posts: 14
Joined: Oct 2012

I know I wouldn't take care of a new thread like I should. As far as disscussing concerns with my MD's I really don't have anymore. I was 600 miles from home getting top notch care from University of Mich, cancer center. They diagnosed me, got me ready for radiation and gave me radiation treatments. Now I am back home in one horse town, Ironwood, MI. in the upper peninsula. I have to drive to Marquette for PET and have seen a new oncologist here in Ironwood. He is the one who ordered PET and said I should get chemo. I am only couple monthes out of RT but dont feel like I am getting any better anymore. I hope I am wrong. Just have to hang in there I guess. Not married, buried mother in November. Have daughter in Cincinnati but don't know how I could get everything transferred down there. She wants me to but I feel like burden. More later. Wayne

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Wayne,  new threads come and go fairly quickly on this forum ... you do not need to "take care" of a new thread.  Infact, you can start a new thread each time you post something related to yourself.  It just helps those who want to respond avoid having to scroll all the way to the bottom of an old thread that was started by someone else to find your latest comment about what is happening with you.  Your current situation is one that forum members might be able to provide some words of experience and wisdom about if they can find your posts.  I am aware of how isolated the upper peninsula of MI can be for having access to medical facilities.  Staying home in a remote place like Ironwood is not a good thing if it means that you are all alone when dealing with a serious health crisis.  Having family and friends nearby is something that can make undergoing cancer treatment so much easier to endure.  If your daughter wants you to move closer to her in Cincinnati, then getting your medical records transferred to a major cancer center near her is something that should simply require sending a request to your current doctors.  You have a computer, so look online for a major cancer center in Cincinati that is highly regarded and make some phone calls to the doctors in that center who have the credentials you need.  Set up an appt. and call your current doctors to send your records to the new doctor.  If I were your daughter, it would not seem like a burden to have you live near (or with) me during this time when you need to be close to those who love and care about you and within easy access of major medical facilities.  Please consider giving your daughter the gift of close proximity to you at this time when she wants you near so that she can help tend to you.  Then introduce her to this forum.  The information and support provided by the good people who post here is a source of strength for caregivers, too. 

tackstrip
Posts: 14
Joined: Oct 2012

Thank you for your reply, very well said. And true. Sometimes I just got to hear it from somebody. Just need a good kick in the ass now and then.

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

If you go to the top of the topic threads where you see "HEAD and NECK" cancer, below that are blue letters that say "post new forum topic". Click on that and you could start your topic and tell us your story. You will get a lot more responses and help for yourself.

BTW....We're from Michigan and loved one was treated at U of M also.

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Wayne (tackstrip) One of the nice members of this forum (Pam M)  started a new thread for you with the subject line "Say Hello to Tackstrip!".  You have received several helpful comments on that new thread from other forum members.  I just wanted to make this final post on here with the link to the new thread in case you look at this old thread again.  Hopefully this old thread will not be used anymore ... but instead, you and others who want to communicate with you will go to the new thread at the following link: 

http://csn.cancer.org/node/255752
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