Hi my name is Mary, my husband and I found out in May, he had cancer at base of tongue, and throat and left side of neck. He has been sick with sore throat and trouble swallowing for over a year. Then the lump showed up on his neck. Neither one of us thought about cancer, lump grew to the size of a quarter. In June he had aurgery, they cut him from ear to ear, down his left side to the shoulder bone, also split the inside and outside of chin and under. Had no idea how bad this was until after surgery. He had a graft from his left arm to rebuild the tongue and the free flap to swollow. Came out of surgery with g tube in. unable to swollow. When we came home about 2 weeks later his tongue became gray and was falling out of his mouth. Went to doctor, and he cut it off, said the tongue had lost it's blood supply, so lost all but the very bottom of tongue. We finished 7 weeks of rad, with all side effects.

I've reading the site for awhile, havent' heard of anyone being on a g tube this long, and not looking like he will ever come off of it. Also, with the lost of the tongue he is unable to talk.

sorry for talking so long.
thanks
Mary

Hi, Mary, welcome aboard. First let me tell you Frank has had a feeding tube for 2 years, and he is also unable to speak. he literally had the bottom of his face removed and rebuilt. he communicates by writing, and that`s just natural to me now. You`ll find lots of support here ! Dee

Even those of us that have not had the extensive treatments such as packer have been on feeding tubes for long periods. I had a particularly difficult time getting back to solid food due to the prolonged mucoscitis in my mouth. I was on the tube for about a year and wouldn't have made it without it. Gradually the soreness went down, the taste came back, everything but the saliva normalized. My water bottle is as natural a part of my hand now as my wedding band or watch. It can take a long time to get back to eating normally, so do not be surprised by that. And as Packer said, when the treatmetns are extesicve and radical, the tube can become a permanent part of your life. I think we all believe that the alternative is much worse....

thanks for the help. We also talk by writing, it's funny he was the alway talking and now I am. I've been doing a hit and miss thing learning how to help him. Neither one of us thought about after the surgery. I had no idea how cancer attacks the body.

We're doing this one step at a time. And the next is speech theapy.

thanks agian for the words, it's nice to hear from others.

Mary

hi Mary,

i was on a peg for 18 months and it served me well since i was able to maintain my weight and never felt hungery or stressed about what my next meal would be. i actually enjoyed the smell of food...

during that period, i met a fellow who had his throat closed off so he couldn't eat anything. he was on a 'permanent' peg.. however he was one of the most upbeat, energetic fellows i've ever met. he was at Hopkins to see if it was possible to rebuild his throat. unfortunately that can't be done at this time... i hope that as research progress, someday he may get his wish.

you have come to one of the best places to get support and learn how to help your husband.

larryb

Hi Mary,

Welcome to the club. You will find alot of support in this forum. By G tube do you mean PEG tube in his stomach to feed him thru? Do they plan on any more surgery on his tongue? What type of radiation did he have, IMRT or field Radiation?
Is he considered cancer free? Please post again with more details. Hope his recovery is going well. Dan

Sorry didn't think about what can of cancer. He was diagnosised with disease of the larynx neck, and mal neo tongue base. The doctors told me after surgery he had enough cancer in him for 7 people, and they also removed 70(not sure if right) lypnodes.

He went though 7 weeks of IMRT x30 on both sides. He is cancer free so far. He also was a drinker and a smoker. Stopped drinking 15 years ago, but contiued smoking, so the damage was done. He's 6'3" at 149 pounds. He lost over 100 pounds before the surgery. I'm working on putting some weight on him.

Thanks for the well wishes, I also send them back to others.

Mary