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alive and kicking with question concerning speech

ziggy62
Posts: 2
Joined: Jun 2010

greetings all. so happy to have found this board a few weeks ago, truly a wealth of support and information.
a brief history / details:

48 year old male diagnosed with scc tonsil in mid feb 2010. (heart attack dec 26, 2009)
made it through 4 chemo treatments, my 35th and last radiation treatment is tomorrow!!!
i swear i thought the day would never come. still struggling with intense mouth pain, mainly tongue. morphine and peridex do cut the pain for the most part. use peg tube for feeding. paxil for depression which has gotten pretty intense over the last 3 weeks. magic mouthwash for saliva troubles.

i haven't seen many posts here concerning loss of speech. tongue is so swollen that it's pointless and very painful to bother. first kicked in about week 4 of radiation. i am
hoping when radiation stops....the swelling will go down?

thanks, and thanks to all who have posted here with answers to others questions, and who
have posted success and recovery stories. so easy to feel hopeless .....it's a true blessing to see others who have struggled through and have at least most of thier lives back.

take care all....

zigggy

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

After radiation finishes including the residual of the treatments, your tongue should reduce in size as the healing begins. If you are finding speech and swallowing a problem after this happens, you might want to find a speech pathologist that specializes in head and neck cancer patients.

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

Also, just as a little fore warning, even though you are finished, you will still be "cooking" for 3 - 4 more weeks. So any signs of progress during this time are realllly slow, after that and the next few months, they are just slow.....main thing is to realize it's a slow process to begin seeing signs of improvement and progress....stay positive though. You are done, and not getting hammered everyday, it just takes a little while to work it out of your system....

John

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

I lost my ability to verbalize somewhere around the end of treatment. I would go around with pen and notepad to converse my wants and needs. My wife would not accept head nods of yes or no. She "made" me use my voice during any conversations that required a simple answer. THis system of hers helped me alot when speech therapy came around to re-learn to swallow. The swollen tongue thing was also a problem for me. I remember at night, I would finally get in deep sleep, then for some reason I would end up biting the edges of my tongue........and man did that always hurt, and I'd struggle to get back to sleep and coughing up junk. Anyway, your tongue should return to it's normal size in about 2 weeks (but everybody is different). You are now coming upon the hard part of the treatment. The part of trying to heal up even though you are still "cooking" from the radiation. Some parts of your body will be quick to respond. Many others may take months to get to a proper functioning level. I know this is a bull-jive statement, and everybody says it, but it's true. "You gotta be patient....it just takes time" and try your best to do what "they" tell you to do. It's the biggest project you will ever undertake.

Larry

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Four weeks out from end of treatment now. Yes, it was very difficult to talk, what with the swollen tongue, mouth sores and excessive mucous. And it was the worst during the last week or so of treatment and for a couple of weeks afterward. I did the biting of the edges of my tongue trick several times, while sleeping. Ouch. Man, I thought I invented that trick, as I hadn't heard of it happening to anyone else before. I am seeing steady improvement, and this week has been the best so far for voice and phlegm reduction. Eating liquid and soft food now, but I do notice a lot of tongue and throat pain if I am too agressive with food.

Deb

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Ziggy,
Good advice from everyone above. I had SCC tonsil. Operated on in Jan '10. Ended rad/chemo in mid-April, so I'm 8 weeks out. Lost my voice about 4th week and did not feel comfortable talking in public (work) til last week. But could get words out a few weeks ago, just not coherent. My silent phase lasted 4 or 5 weeks but like others said, it should slowly improve. Speech pathologist is an excellent idea. I went 2 weeks ago to one and exercises and support I got from her was excellent. I'd look into that. When it came to talking and eating for me, it was all about the tongue. The faster the tongue heals the easier the talking and eating. And Deb and Cajun, I thought I invented biting my tongue at night. I agree...OUCH!
Greg

Fire34
Posts: 353
Joined: Feb 2010

Ziggy
I am about 7 months out now and my voice has changed to a hoarsness when I talk and can barely be heard even when I shout. My worst was almost like Cajun's during my third week of radiation my voice quit and I also had to use a pen/paper. I do not know if it will be permanent as I had a tumor right next to the vocal cords
My tongue was only swollen from the 5FU I was on during radiation and diflucan worked for me. Swallowing has gotten better for me as time progressed and will talk to the rad/onc at my next folow up. Best wishes & Prayers on you recovery
Dave

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

dave, my cancer was actually on my voice box and i had 35 rad trmnts. Last one was 10/22/09. My voice was not able to be heard for sometime but gradually came back. I still get hoarse at times but still able to be heard. I'm hoping that your and Ziggy's will following my example...lol. I'd guess chances are pretty good that your voices will come back. Good luck all.
God Bless friends,
debbie

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