Epiglottis Cancer and Start of 6 weeks Radiation.

VioletandDad

Hi Everyone,

My name is Violet and im new to this site, im actually here for my Dad,

I have been reading this site for a while now to find answers and help! The community here is truly amazing and i wish everyone the best!

My Dad was diagnosed with Epiglottis cancer stage T2N0Mo SCC back in January 2016 and had operation to remove his epiglottis in February, the recovery was/is horrible and to see him unable to eat and to be on feeding tube for 3 weeks was really hard. The constant choking, im scared every time he eats, whats going to happen, i have the phone nearby all the time...its just hard, really hard.

He has lost 7 kgs, however he was determined to eat again without his epiglottis and successfully gained 10 kgs now:) He can eat almost everything again, He is now 70kgs.

The doctor recommended radiation (60gy total, 2gy/day- 6 weeks) after they removed the tumor as they saw evidence of the cancer cells braking out of the actual tumor. That was 4.5 months ago... Im just so scared that he will loose all the weight he gained again:( 

On the 20th of Jun he started Radiation and im really really concerned as his voice is almost gone overnight and it really upsets him, and the dry mouth. He is doing pretty well, will enter his 3rd week on Monday. I just dont know what to expect next, we were not expecting his voice gone overnight..or is this normal? What can we expect next? We are doing the Salt -Baking soda mixture, is there anything elese we can try to ease the hoarseness and dry mouth?

 

Thank you so much, Any advice would be very much appretiated, and we wish you strength!!

Blessings!

Violet

Puggle

Radiation

Hi Violet,  from what I can remember from my husband's radiation, the hoarseness came on fairly quickly.  It wasn't permanent and did come back a few months after the radiation was completed.   He also had dry mouth and severe mucous production.   He did the salt-baking soda rinse and that did help him somewhat.   Some people love the "magic mouth wash" but that didn't work for him at all but it is worth a try.

Does he still have his feeding tube?  If so, don't be afraid to use it to keep him hydrated and getting full nutrition.   If not, make sure he tries to get adequate nutrion via mouth with some soft foods that he will be able to tolerate. 

VioletandDad

Hi and thank you for your

Hi and thank you for your help! He doesnt have the feeding tube anymore, it was inserted through hes nose and was removed 3 weeks after surgery. The unknown is so terrifying, dont know what side effects tomorrow brings. Im just really worrried about eating, it is hard without epiglottis but he pushed through ..he wanted to eat again so badly. 

How is your husband doing , may i ask?

All the best wishes !!

Violet

Puggle

Everyone reacts differently

Hi Violet, Everyone reacts differently but due to my husband's experience and reading through other's experiences on this board, your father will most likely have  mouth and throt soreness throughout his treatment.    Radiation is cumulative in its side effects.  The hoarseness and soreness will increase and even continue for awhile after treatment.   We hung up a calendar and would put stickers on each day as he went through his treatments to help count down the days.  

 

Your radiation oncologist should have provided you with a list of possible food options.   You will have to see what works best. Normally room temperature soft foods that are non acidic work well.   If he has a lot of mucous, stay away from milk products.  Try some of the protein drinks.    You can also add calories such as olive oil or peanut butter to the protein shakes just to help keep the weight on. 

Unfortunately my husband passed away in June 2014 at the age of 53.   However, it was from a second primary of lung cander, not the epiglottis cancer.  Feel free to read the summary in my profile. 

Best wishes for your Dad through out his treatment and stay in touch on the boards.   

Grandmax4

I can only offer encouragement

4 years and 7 months ago, I was operated on by di vinci robot, to remove my epiglottis~~I will tell you the struggle is real, but, the improvement will happen. I was blessed the cancer had not invaded my lymph nodes, so no chemo or radiation was needed.

Immediately after surgery, I was given a feeding tube, up my nose...to swallow even a chip of ice was impossible for me. Boost and Insure kept me going for the next 12 weeks...my team of doctors immediately set up speech therepy for me, this included learning to swallow a new way, to keep food and drink from entering my lungs. From then, until the next Thanksgiving, I was on a pureed and liquid diet. So, yes, almost a year. The day, I tried a piece of pork roast and it went down sucessfully, was a time of celebration. From that day, until now, I can eat whatever I want, and drink , fluids, not just sip them.

If your Dad's team have not set up speech therepy, urge them to do so, now. 

My voice was a whisper and raspy, through the therepy and exercises I was give, my bowed vocal cords became strong again and my voice is loud and clear. 

My EX primary Dr asked me, " how do you expect to live with out your epiglottis", I told her, I had complete trust and faith in my team at The James, Ohio State Wexner Center.  I will live.

I suffered terribly with the mucus, it was the worse part of recovery, and I still have some , but, I can live with that.

Wishing your Dad, strength to fight this battle, he will be fine, you just have to show cancer who's in charge. 

I had cancer, but, cancer didn't have me!! Best of luck!!

wmc

Hang in there it will get better.

My epiglottis wasn't working very good and I was aspirating all the tome just didn't know it. I had silent aspiration. My tumor was just above my vocal cords and I just had surgery to remove it.

My thoughts and prayers for you and your father

Bill

VioletandDad

Thank you everyone! The time

Thank you everyone! The time is flying, yet it feels like its taking forever to finish the 6 weeks. Almost 3 weeks done. He has a mild sore throat as well now and the hoarseness. And dry mouth. And he can not shave for 6 weeks he was told, I was thinking he could use electric razors? It really bothers him. ..will definitely ask his oncology team.

I try to keep really strong in front of him and hide my feelings, i feel like he doesnt want to see my cry ..he is already full of guilt. He has smoked for 40+ years I can see he regrets all that and the drinks ,we have tried everything so that he quits, but never did. In January after the news he quit. It was time.    

...the unknown is so terrifiying. I love my father very much , he is my best friend! I dont have siblings .. behind closed doors im a completely different person ..Then i cry ...I just want to help him the best i can. 

My thoughts and prayers are with you all. 

Violet