Base of Tongue Cancer/Head Neck Cancer

Lynlls said:

treatment
I so sorry you have to go through this. My husband had the same time of base of tongue and lymph node cancer. His treatment was finished about five months ago. He had chemo once a week and radiation six times a week twice on friday for six weeks. The cancer center insisted he have the feeding tube placed before the treatment began also he had a dietitian and a speech therapist right from the start. The speech therapist is the swallowing person to help with keeping the swallowing muscles active.
My husband only lost 20 pounds and the feeding tube saved his life, it is easier (explained to us) to have he tube put in before radiation starts because the tube is placed down your throat. I am sorry to say that every cancer patient is different how they heal and the stage of the cancer effects the recovery.

I am happy to report that the cancer on the tongue is gone and he had a neck disection of lymph nodes removeing 42 of them there was no cancer in the nodes but it showed where it was at. But he still can't eat like befoe he gets 6 cans of liquid food through the tube still, but he can eat a little yogurt or ice cream bar, liquid soup. This takes a lot of time to heal his esophagus is still swollen. He will be going to the ENT doctor they may stretch his throat to help him better I just don't know. He also will have a PT scan next month. He had a PT scan before treatment began and it showed the only area the cancer was in was the the two places.

He is driving the car and talks well. he has constant dry mouth but the pain in is tongue is gone. He still has a problem with mucus but not as much. This really is a one day at a time situation. You will see a lot of brave people going through a lot of different cancers old and young. It makes you brave enough to go through the treatment to see the bravery of others. You talk to them, we had a man going through the same type of cancer we talked to him when we were getting treatments. We saw the docs everyday while treatment was going on or their nurses to ask any questions we needed. Blessings to you keep up the fight.

oceancaydream said:

Still can't swallow
I'm not even sure where to begin in this story of my husbands Stage IV high grade 4 Undifferentiated Large Cell Neuroendocrine throat cancer of the back of the throat. MANY Lymph nodes were involved on both sides with extensive necrosis. Neuroendocrine histology is very rare in the throat so i am told. Not much data to support methodology.
He went the 8 weeks 5 times a week of radiation which was hell and 4 out of the 6 weeks of chemo. (His blood values were so bad he couldn't do 2 of the 6 scheduled rounds of chemo)
It's been 3 months since the treatment ended.
He has not had one bite of food in over 5 months and not even a SIP of water in the last 4 months!
I can't even imagine that.
My question is this:
Can not using your esophagus for that long be damaging? I worry he will never be able to eat or drink again.
He spits up this awful mucus and lately, this nasty smelling green chunks of something vile.
We went last week for a doctor's appointment but the oncologist seems to think we need to wait until after Christmas to do a PET scan or anything else.
My husband looks good so everyone seems to assume he is cured. My gut says differently but I am certainly no doctor!
Anyone with any help would be so appreciated.
I feel we are in limbo here.
Kay

sweetblood22 said:

Hi Kay.
I guess I'm not clear on why he cannot swallow. Is it mouth sores? A stricture? Nerve damage? Do you guys know why he cannot swallow? I didn't drink anything at all for about 5 months, and I couldn't eat anything by mouth for 9 months. I had severe mouth sores and I had a stricture. For mouth sores I would recommend taking a look at L-Glutamine. Many of have had success with it. I would take a heaping tsp in a cup of water and swish and swallow. You can read about it in the superthread, I will post the link here for you. If it's a stricture, they can go in and stretch the esophagus. I've had a total of three. If you don't know why swallowing is an issue, then they can do a swallowing study, where they take pix of you swallowing different stuff or just the liquid to swallow and they can assess what the issue may be. There are speech therapists and pathologists, that can also help with exercises. Guess that is all the imput I have since I'm not clear why.

It did take me a very long time to be able to eat normally. I had my peg tube for 18 months. I finished treatment on 5/15/09. I didn't really even start eating what I would consider normal food, until a year later, like in June of last year. You can 'lose your swallow' if you do not keep swallowing during treatment and recovery. Mine was radiation damage.

Here is the superthread link. There are three or for links for Glutamine under the section, that says something like, Products and tips that help with side effects:

HNC  SUPERTHREAD

Best of luck

oceancaydream said:

Still Not Swallowing
Hello Pam,
Thank you for the reply.
The smelly green chunks are as nasty as they come.
The oncologist doesn't seem to think much about anything we report so we wait...
My husband seems to think that if we do nothing, it will all just go away. Drives me CRAZY!
It's nice to talk to others who have been there and done that.
Warm Regards
Kay

oceancaydream said:

Still Not Swallowing
Thank you so much for the reply and link.
He can't swallow b/c he says when he tries he feels something still there and it gags him. He feels it's better not to do anything than to upchuck so we wait...
I'm not sure if it's stricture or an obstruction still there. He says it feels like a finger in his throat and now his ear hurts and jaw.
He was initially diagnosed with many large tumors but the biggest one was a tumor measuring over 4 inches across and was less than 3 weeks from being suffocated by it when he went for his biopsy and the surgeon "debulked" it.
His first CT Scan since treatment showed the tumors have shrunk by half but are still there. Hopefully they are "dead" but we won't know that until the PET Scan in 2-3 months.
No one seems to be worried about this but me.
The things he coughs up are nasty and smelly dark green chunks which i suppose could be dead tissue killed by the radiation.
My husbands approach to this is to do nothing and say nothing but I think that's foolish. I am biting my lip trying to allow this up to him but it's hard!
Thanks for your help. It's nice to have someone that's been there- done that
Best Regards
Kay

oceancaydream said:

Still Not Swallowing
Hello Pam,
Thank you for the reply.
The smelly green chunks are as nasty as they come.
The oncologist doesn't seem to think much about anything we report so we wait...
My husband seems to think that if we do nothing, it will all just go away. Drives me CRAZY!
It's nice to talk to others who have been there and done that.
Warm Regards
Kay

John Watton said:

Swallowing and side effects
Hi. I am just over a year out from treatments for a stage three cancer of my tongue and throat. I spent many long nights sitting up because the effects of the radiation and chemotherapy were devastating to me. The side effects grew worse and worse, but now I can say they have subsided. Those chunks happened to me as well,along with extreme amounts of mucus . My doctors encouraged me to keep eating and drinking as much as possible because after treatment recovery would be much harder if my Throat "forgot" how to swallow. Easier said than done! my local physician arranged for me to have a feeding tube. It saved my life! For a while I simply was unable to swallow at all...or talk for that matter.
Now things are much better...and the fight continues . I blogged the whole experience .
I do need to update my writing .I was waiting for some definitive answer before doing do. Now the time has come.I wrote to keep my friends and Church family in the loop while I was having treatments,and was quite surprised at how many people followed it. If you are interested let me know and I will send you the link. Wishing you both the very best for the future.
John

John Watton said:

Blog
Think this might have posted twice. Sorry

Hedwig said:

Just starting this journey
My hubby age 66 noticed a lump on the left side of his neck,biopsy proved positive,cy scan, another area noted at tonsil area,
Then surgery to remove tonsil and did some biopsies,now scheduled for chemo and radiation. We has a dental checkup and dep cleaning,and flouride trays made to use every day. We met the chemo doc, very scary to hear about the drug and side effects (cisplatin). We mee the radiation doc this week and have a swallowing study. It sounds like 5 days of radiation and one day of chemo.I am researching every thing I can to help him. I have stopped all outside activities and it is strictly focusing on him. We did buy a juicer and trying to get used to that. He is just starting to eat after the tonsillectomy. The docs seemed all so casual about or maybe it is just my anxiety getting the best of me. We are both retired and have lived such a simple life and that was just fine with us. I am praying and have a few friends praying for us. We have only shared this with a few people cause we want to stay positive. Thanks for listening and hope to share our story to help others and pick up some hints from all of you. Gob bless.