Hello to everyone, my name is gordon. First of all, I'm glad I finally have found this site and you folks. Finding a group of people that have had similiar or the same cancer surgery and willing to talk about it is unusual. I had left tonsil cancer with 9 of my limp glands on the left side of my neck positive for cancer. Other glands on the left side along with half of my thyroid gland were negitive for cancer. With left side radical surgery and an extended radiation treatment to both sides I now go into the waiting period along with a lot of you to see if it will ever come back. I wish the best for all of us to say the least.
Anyway, I have been out of radiation now for three full weeks and I still cannot eat anything by mouth for several reasons:
1. I have this weird taste in the back of my throat that will not let me eat anything. Has anyone had this happen to them and how long did it last after treatment stopped?
2. Swelling in my throat seems to increase instead of decrease at times. Is this normal?
3. I have a feeding tube and I was wondering if they ever settle down from hurting and adjust to your body somewhat?
4. I have no saliva and I've been told that I probably will never have saliva again. Have any of you gotten some of your saliva functions back?
Thank you guys for being a part of this site so us others that find you can get some help.

Welcome, Gordon. You have come to a great place for answers. I will address some of your questions, being a year out from the surgery, and 9 months from the end of rad/chemo. Here goes:
1. Your taste buds have been fried and will come back gradually. For a long time all I could taste was salt, and when sweet came back, it was just good for a bite or two at first. Strange, but your taste will eventually return.
3. I had a feeding tube for many months and it did not hurt at all. I think you need to discuss this with your doc right away, as the pain might be from an infection. This is just one of many possibilities, so you really should call this to your doctor's attention.

Keep checking back, as I am sure people more knowledgeable than I will be able to provide more information. Hang in there, Gordon. If you are like most of us, you figured as soon as the treatment finished, you would feel better. Unfortunately, it doesn't always work that way, and is usually a slow process. Pretty soon you will come to a point where you can see a little progress every day as you gain strength and your body heals from the assault of radiation.

Joanna

Hi Gordon,
Welcome to the site. I am a little over two weeks out myself and am experiencing a lot of the same things. I definitely got worse after radiation was over and, like you, I am waiting to turn the corner. I am subsisting on liquid foods for now and they don't taste very good but it's either that or starvation since I didn't get a stomach tube.

The wierd taste is probably normal.
I haven't had any throat swelling problems but then again, I didn't have surgery -just rad and chemo.
Your feeding tube shouldn't be hurting. Call your doctor.
If you had IMRT radiation you will get some salivary function back.

Hi Gordon, I think what you are going through is completely normal. My husband after completing his radiation/chemo treatments had pretty much the same problems afterwards - and even to this day, still has a problem with dry mouth and some mouth sores and the taste buds have not completely come back yet either. He finished his radiation on 11/29/02. Everyone is different, and with my husband, since he has other health issues - takes him (it seems) longer to heal than a lot of other people. He didn't have the PEG and swallowing was very difficult - but eventually got better. Hang in there, you are doing good so far, and everything sounds par for the course.

Gordon,

As far as the weird taste goes, if you also have any white fuzzy patches in your mouth, you might have thrush or candida.

As far as the PEG tube settling down, they usually do, but some people have a little more trouble with them than others. My daughter has had a lot of trouble, but she still was glad she got it. Actually, it is vital to her life, because she can't open her mouth wide enough to eat or drink anything. Just be sure to keep it clean and report anything suspicious to your doctor. She has had tissue granulation around hers about 4 times now, but the docs use silver nitrate on it and it clears up. If the skin around the tube gets "bubbly", let your doctor know. Also turning it to a different position occasionally helped, but ask your doc first if you should.

Rainbows & hugs,
Rosie

Hi Gordon,

The good news is you are probably past the worst feeling time in your treatment! The worst effects of radiation should start fading soon. I also lost some sense of taste which returned within a month or two after treatments ended. Swelling is indeed a normal part of the procedures but check in with your doctors any time you don't like what is happening. You might try sleeping with extra pillows or a board under your mattress tilted so your head is several inches higher. The swelling also gets better with time as lymph fluids find new pathways past the surgery area.

I also have off and on again problems with yeast (thrush) infections. I don't get white patches instead I start getting a burning sensation from acid or spicy foods. This goes away quickly with a Nystatin prescription liquid (I think is for children) These kind of infections are fairly common and diminish over time as your body gets used to the changes in saliva quantity and PH balance.

Saliva quantity is the bad news...I thankfully, have gotten some back but not nearly enough to eat like I used to. I find milk works really well as a saliva substitute when eating and I also use Biotene mouthwash to wet my mouth. Water just doesn't seem wet enough to do it (although you should still drink a lot of water!)

keep up a positive attitude and try to get your body moving it helps alot.

Don't be afraid to ask more questions.

I want to thank all of you that replied. It helped me lots. I'm sure as time slowly goes by, while I wait for some changes, I'll find something everyone talks about (patience) hahaha. Thank you again.