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Laryngeal Cancer

CaLynne
Posts: 1
Joined: Oct 2004

Hi all,

I am writing to see if anyone can give some suggestions in regards to Laryngeal Cancer. My mother was just diagnosed this past Friday. She has a tumor on her throat on top part of voicebox as well at the back of her tongue. The doctor stated it has began to spread to her lymph nodes in her neck. She was given 2 options: Radiation and chemo; or: surgery followed by chemo. Supposedly, a 40% chance of cure. She is frightened about losing her voice and possibly, not being able to swallow. She is also looking in to alternative medicine but this idea scares me. I was hoping someome who has gone through something similiar to this could offer some thoughts. I appreciate any suggestions or help.

Sincerely,

A scared daughter

gilfigueroa
Posts: 2
Joined: Oct 2004

Hi, my name is Gil and I was diagnosed with base-of-tongue cancer on March 17, 2003 ... completed my chemo and radiation treatments on August 7, 2003 ... and have gone through a very successful recovery period for the last 14 months. Today I have very few difficulties and in fact most people tend to remark that I have never looked better in my life!
I have quite a story to share, so please feel free to contact me if you would like any information, etc. Oh, I was a 59 year old male who was being treated for diabetes when I began my cancer treatment ... it wasn't easy, but I never even lost any hair, never vomited, was never hospitalized and drove myself to chemo and radiation treatments ... yet, I was given the maximum allowable chemo treatments and (simultaneously) 35 IMRT Radiation sessions.
If I may be of any help, please feel free to contact me.

Regards,
Gil

suey
Posts: 10
Joined: Aug 2004

Hi Gil
What were your early symptoms. I keep losing my voice and my food is not tasting right. I have not gone to my doctor yet.

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denistd
Posts: 483
Joined: Apr 2009

I have cancer of the larynx, will be getting 3 chemo sessions and 35 rads. The chemo drug is Cisplatin, which is really toxic. The doc will be giving me Emend, did you have this? I want to find out if the emend really does prevent or lessen the vomiting? Denis

1925
Posts: 1
Joined: Oct 2009

Gill I joined the survivors network today. I don't know if my message will get to you or if my letter is in the information. My user name is 1925, Email bcjc03love@juno.com, Tel # 601-268-9017 Would you please send me info where I can call and talk with you. I finished 36 treatments of radiation July 2,2009 and have not been able to swallow. I have a speech thearpist work with me 3 days a week

Thanks, 1925

TOMC
Posts: 1
Joined: Oct 2004

On Feb 12 of this year I had an operation for oropharyngeal cancer. They removed the floor of my mouth, my tongue and I cannot swallooa portion of my esosphagus. I cannot swallow, the last food I had was Feb 10 of this year. I was not a happy camper. But honestly I learned to appreciate the aspects of life that I took for granted. Granted, I can now smell food and hear food much better than before, the funny thing is when I dream the tastes in my dreams come back, I know this may not seem like solace, but waking up and thing I just had a great meal can start the day off great. There is a regime of pills and my Ensure through my g-tube,b ut you can play games with it, alternate your schedule. But I swear, the most important thing in recovery is to stay active, both mentally and physically . Become active in politics in your local community, become athe spokesman without a voice. When you see your doctors demand answers, don't let them sluff you off. It is your body, and damnit get your answers. Your life will change, but it does everday anyway. Be a fighter, find a cause the envionment, write letters to your elected officials, get pissed and do something about it. You are still you inside, don't let anyone take that away from you. I hope I helped Tom Crowley

SRM49
Posts: 5
Joined: Jan 2005

Hi. Last May I was diagnosed with throat cancer that involved one of my vocal cords and one lymph node. I was stage 4. Of my three cancer doctors, two recommended removal of the vocal cords and one recommended having chemo and Radiation concurrently. After questioning all three doctors I could not see where the surgery , a radical neck resection would in any real way increase my chances for survival so I opted not to have it. As of November my cancer is in remission and my voice is still hoarse but I still have it. I could never suggest or make that decision for someone else, but just say what I did.

Frank203
Posts: 7
Joined: Jul 2008

My husband was diagnosed with laryngeal cancer stage 3 last June. He too was given the option of surgery or radiation and chemo. He went with the radiation/chemo. His treatment ended one month ago and his voice has returned as well as the ability to swallow. The only problem now is heavy coughing due to excessive mucus. Nothing seems to help. He was on Erbitux for the chemo which the drs. said causes this but I was wondering for how long. He's driving us both crazy with the coughing.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I am not very good at this and sorry if I do this wrong.
My husband was diagnosed with T-4 N.O. Cnacer , What does this mean. I read about sizing the tumor, and N.O. meaning not in Lymph nodes. and so on.
I am scared to dead , trying to find ways to keep his spirits up and understad what is happening to him. He never smoked or drank.
He starts Radiation and Chemo March 16. We will have to leave our home to go Ann Arbor Mi. for treatment. I need help understanding on what to do , say and all these things to help him.

Jennie

fighterpilot
Posts: 5
Joined: Mar 2009

Jennie: I just finished treatment for larynx cancer Aug. 2007. I just had my last follow-up at MD Anderson in Houston and am still cancer free.

The treatment was difficult. My wife was ill and could not be with me in Houston for the treatments, I live in Arkansas. I rented an apartment and stayed in Houston for 7 weeks for treatment. I have four daughters who took turns taking care of their daddy.

Tell you husband the treatment is not fun, but bearable. I never had to have a feeding tube because I made myself keep on eating and swallowing. I did not lose any weight and only lost hair in the radiation area of the neck. I did not lose my sense of taste during the whole time. I completely lost my voice the last 2 weeks of radiation but it slowly recovered after 2 month post radiation. My voice is raspy sounding but easy to understand.

After over a year from treatment I am getting my energy back and feeling much better. The only side-effect that is forever is the dry mouth, thick mucosa, and the raspy voice.

The cure rate is high if no lymph nodes are involved, about 90%. You and your husband should relax and enjoy your time together. He is lucky that you will be there with him through the ordeal.

I am 74 years old and the treatment is harder on us old guys!

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Thank you so very much! We get mixed messages from the doctors and is all new to us. My husbands voice is almost gone. He is my best friend and I can't remember a time that he was not there for me. So I will be there for him. He is 56 and we been married 35 years.
We live in Michigan . I was born in Arkansas!
Thank you this gives me hope and that is always good for the heart .
Bless you
Jennie

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I am so new at this I did not realize there was response to my querry.
So This is my Email Addy woody@I2k.com
I will try to let you know how it is going.
Thanks you all for the help.

Jennie

fighterpilot
Posts: 5
Joined: Mar 2009

Jennie, my wife and I have been married 55 years, we have you beat. I hope your marriage as been as fantastic as ours has been. It sound like it if he is your best friend.

My e-mail is jaym@madisoncounty.net

You must be a great woman if you are from Arkansas!!!!

J.

Gbrooklyn303
Posts: 1
Joined: Oct 2008

had partial laryngectomy 2005 april,resection of throat no chemo.will be glad to share.
one thing you must trust your md's opinion on how to proceed.there are surgeons and then there are other suggestions? feel free to contact me

george

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

George
They said the could do surgery as a last resort, that they wanted to do Chemo and Radiation, if that did not work they would go in and take his Larynx.
I will tell you how this happened. In 2007 my husband went to our family doctor, said his throat hurt . Doctor did not see anything but had us set up a appoinment to see a Ear,Nose Throat Specialist Doctor. He went and the Specialist Doctor turned out to be a Nurse practitioner , My husband was so mad , he said why pay money to see practitioner. So he did not go back Until 2008 He started losing his voice . Again went back to family doctor and had him set up another appointment with Ears, Nose and Throat doctor, this time we did see him. and the rest is history.
I thought the Cancer doctor said that it had spread down and they could not do surgery, and then the said they could if the Chemo and Radiation did not work.

Jennie
Could use support from people who have been there done that.

COOKIE102248
Posts: 8
Joined: Dec 2008

I READ YOUR MESSAGE AND WANTED TO LET YOU KNOW, I AM A SCARED DAUGHTER TO. MY MOM WAS DIAGNOSED 2 WEEKS AGO, AND TODAY LEARNED OF HER OPTIONS. THEY WANT TO REMOVE ENTIRE VOICE BOX, AND SHE IS SCARED. MY GRANDMOTHER HAD IT DONE IN THE EARLY EIGHTIES. SO, MY MOM KNOWS WHAT SHE WENT THRU. I HAVE BEEN RESEARCHING DIFFERENT OPTIONS AND I SEE ALOT ABOUT SOME LASER TREATMENT, ONLY HER DOCTOR NEVER MENTIONED IT. WE ARE BOTH SCARED AND I WOULD LIKE TO CHAT WITH YOU MORE. WE LIVE IN MISSISSIPPI, NEAR MEMPHIS.
YOU CAN EMAIL ME AT CSERENITY69 AT AOL.

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

long story short--My mom had laryngeal cancer stage four (March 07)was on top of voicebox, they tried radiation with erbitux(chemo) at first for six weeks very intense she was burned badly and in and out of hospital with every side effect mentioned, well that didnt work so her only option was laryngectomy with neck dissection she was VERY VERY SCARED and DID NOT want to lose her voice so dct said he couldnt promise but would do his best (i think he went by her wishes) she went through a 10hr+ surgery we new there was chance of no voicebox i told dctr do what he had too and reassured mom we would deal with the voice later on even if she had to use a mechanical device. Well Dctr said he was able to save the voice box had to remove almost every lympth node and tissues etc.. as cancer wasEXTREMELY bad but he assured me that every test he did in the o.r. was negative and that he had gotten it all out(myself i wish he had taken it all if the cancer was that bad rather then take a risk) well three months later cancer came back in same spot and had spread to lungs so needless to say there was no more she could do she tried chemo for 4 weeks and that didnt work and she lost her battle in August 08.

So i understand completely where you mom is coming from about her VOICE.. truelly who wants to lose there voice BUT if i had to do it all over again i would of MADE the DCTR take it all out and just MAYBE she would of lived longer, I WOULD rather her here today then be gone if all it took was taking out the voice. IT IS A TERRIBLE SURGERY TO GO THROUGH but with love and support and guidance and determination i have no doubt you can do it -- after about 2-5 months mom was back to eating and drinking and was happy again till they told her in FEB 08 cancer came back and she new she couldnt do another surgery nor anymore radiation.

It is in your hands and your choice maybe my story will give you a differnt outlook. I think the laser treatments is same as radiation almost, not positive though i was never aware of laser.
BEst of wishes and I will be praying for you.
tracy

Brendah
Posts: 2
Joined: Jan 2009

Hi all,

I, too am a scared daughter. My dad was just diagnosed with stage 3 cancer of his voice box on Friday Jan 9. He is scheduled to have his voice box removed with a trach inserted tomorrow morning (Monday Jan 12). How do we know this is his best option?

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

Did he have any other treatments first? I wish you the best of luck as you prob read form my post above mom wasnt so lucky but she did radiation first as dctrs recomended maybe had she done surgery first she could have done rasiation second form what i read your chances are better the second way. I will be praying and wish you the best once they open dad up thats its not everywhere, another thing that happened with mom once they opened her it was worse then they thought they told me they got it all after surgery he was 99% sure because all tests in the OR were coming back negative, so just keep in mind so your not shocked three months down the road that it may come back and cells just arent positive enough to read sorry to be the bearer of bad news but i got so excited day of moms surgery and they came out and said they only had to take half voicebox but removed cant remember how many lympth nodes and then he said he was 99% sure all cancer gone it was the best day to hear that but then three months later BANG came back and NOTHING more they can do. You prob wont read this before surgery and every surgery and person is differnt but just wanted you to know.
Your in my thoughts
tracy

COOKIE102248
Posts: 8
Joined: Dec 2008

JUST THIS PAST TUESDAY MY MOM HAD A TOTAL VOICEBOX REMOVAL. SHE IS DIABETIC AND CHEMO WASN'T AN OPTION AND RADIATION WOULD BE WORSE. HE TOOK HER LYMPH NODES ALSO WHICH WAS A GOOD THING BECAUSE, THERE WAS NO CANCER THERE, BUT IT TENDS TO COME BACK IN LYMPHNODES. SHE IS DOING VERY GOOD, CONSIDERING HER POOR HEALTH AND AGE. SHE IS HAVING SOME PAIN, AND THE COUGHING UP THE MUCUS. WHICH WILL CONTINUE FOR 6 WEEKS. BUT SHE CAN STILL BE ABLE TO SOUND SOME WORDS EVENTUALLY BY PLACING HER FINGER OVER THE TRACH BRIEFLY. I AM GLAD SHE HAD IT DONE. I WILL MISS HER TELLING ME SHE LOVES ME, BUT WE TAPED ALOT OF STUFF BEFORE SHE HAD IT DONE. THE RECOVERY IS A LONG ONE AND NOT EASY BUT SHE IS ALIVE AND GETTING BETTER EVERYDAY, AND WE JUST PRAY THE CANCER WON'T COME BACK ANYWHERE ELSE. I AM GLAD HE TOOK HR LYMPHNODES. HAVING HER HERE IS WORTH MORE THAN HEARING HER SPEAK.

CINDY

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

cindy --
I hope everything works out for mom its a difficult rode but like you said better to have her here then not. My mom had to have radiation dctrs recomended first but i wish she wasnt so scared to have her voicebox removed and she just did surgery first i still believe had she done surgery first and had whole voicebox removed then she would be here today. They recommended radiation as cancer was small, radiation didnt work so they said she needed neck dissection with voicebox remove with trache, she was so scared to lose her voice she kept begging dct not to take it so day of surgery i told dct do what he had to to save her life in which he came out after surgery said he was able to save half voicebox so she could talk again but cancer was more then he expected but was positive he got all cancer out as all the test in OR were coming back negative well three months later cancer came back and nothing they could do she lived for 4 more months in pain and suffering. I still wish to this day she did whole surgery first i think she would of had better outcome but ill never know for sure and each person is differnt so i will pray and wish you luck.
The pain and coughing is normal will go away takes time we got mom a erase board so she could write on it to communicate at first and in time she was able to talk with fingers over trache it took 2-3 months and trache was out first time they evnutally had to put back in 2 months before her passsing as cancer got bigger and was preventing her form breathing so she was able to eat for 2 months and loved every minute of it, when she had trache in first time after surgery she went to therapy to learn to talk and eat, swallow with trache in she did great was scary for choking purposes but she didnt have no trouble. Wish your mom good luck and hope it works for her someday she can get a mechanical device and be able to speak again for now she is here to spend time with you and voice doesnt matter continue to tell her that and she will do fine and now she made the right decision as in the end we love and need our moms here with us voice or not. love and prayers
tracy

Brendah
Posts: 2
Joined: Jan 2009

My dad's surgery went better than expected. Cancer is contained They didn't have to take voicebox, and no trach. He starts radiation soon.Thanks for listening. Pray he continues with a new lifestyle (no smoking/drinking)
Brenda

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

WOW cindy that is a blessing. Im very happy for you and hope all works great with radiation it is a hard process but well worth it. Try to keep up your spirits and dads while he goes through that and jus remind him its all worth it in the end. The side effects will be hard but they will go away its just a short obstacle that you have to go through. Best of luck and give him my hugs!!
tracy

COOKIE102248
Posts: 8
Joined: Dec 2008

you got me confused with brenda. my mom had her neck dissection last WEEK.

WE GO TOMORROW FOR HER SWALLOW TEST AND I PRAY THAT SHE PASSES AND THE NOSE TUBE COMES OUT.

CINDY

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

i meant brenda not cindy just reading and typing to fast it was late too LOL

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