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tongue and neck , throat

cheeno
Posts: 1
Joined: Apr 2006

I am 46 years old and have never smoked a day in my life. But I have Stage IVa Supraglottic Carcinoma (base of tongue, vallecula, and into epiglottis). Also into lymph nodes on both sides of neck. I have had 35 weeks of radiation and am still finishing my 4 months of chemo (4 sessions left). It has been 26 days since my last radiation treatment and I still cannot swallow any liquids or any food. I am still coughing up a lot of stuff and saliva. I am wondering when I will be able to eat again and have some relief from coughing all the time. It wakes me up at night and I still cannot get a good night's sleep. I am on a feeding tube through the top of my intestine (J tube) due to my acid reflux. Am tired of NOT EATING and very frustrated. Anybody out there that has anything to share I would be greatly appreciative. Thanks.

teebird
Posts: 2
Joined: Jun 2004

Cheeno, I'm with you - my husband had scc base of tongue, lymph nodes, etc - feeding tube, unable to swallow, phlegm, etc. Each person recovers at his/her own rate; some heal quickly, some slowly. My husband is one of the slower healers - 15 months out of radiation, still on peg, no saliva and ton of mucus. The important thing is 1. be patient and rejoice in little steps and 2. BEG for help - demand from your doctors help in healing, whether that's a referral to a speech therapist to assist in regaining swallowing, or meds to replace saliva. Also ask for an honest assessment of your radiation damage and what recovery you can expect. Hang in there - things get better - you've kicked the cancer out of your system, now have work out the best recovery for yourself.

marlaj
Posts: 3
Joined: May 2006

teebird, thanks for your reply to cheeno. My husband finished chemo and radiation 7 weeks ago, for stage 4 tonsil cancer which had spread to the lymph nodes in his neck. He, too, was never a smoker, so it's mystery as to how he got this. He experienced many of the things cheeno and your husband did, and are still experiencing. He is very frustrated that the healing process isn't going more quickly. I feel frustrated for him. I think he looks much better, and he's gained back some weight, but is still on the peg tube. The swallowing is slow to come. But you are right...things have gotten much better from where we were 7 weeks ago, and he just needs to keep his eye on the future. I hope you are taking care of yourself, too, as I know how hard this can also be on the caretaker/loved ones! Hang in there!

tavz77
Posts: 10
Joined: Jul 2005

Hang in there Cheeno!.... I had stage 4 scc in left tonsil...am about 1 1/2 years out....last radiation was Feb 9 05,,,still have dry mouth and thick saliva...takes time...slow but sure...keep a positive attitude and you will be good in a few month...i had 28 radiation treatments and left neck dissection...elected not to do a feeding tube and lost 120 pounds but got through it,,,,hang in there and keep the faith....
Rich

garyr's picture
garyr
Posts: 27
Joined: Jan 2002

I finished my radiation, 63 treatements, 6 1/2 years ago and still have the dry mouth. (I also never smoked and had stage 1V at the base of my tounge,which spread to the lymph nodes). Biotene gum works very well for me when I am exersicing or just away from a source of water for a while. I am 65 and play a lot of tennis and hike.

Just hang in there and it will get better, it took me about a year.

Gary R

tracy_csn
Posts: 15
Joined: Jul 2005

I am 56 yr old male who was diagnosed with Stage IV cancer in left tonsil in Sept 2004. Never smoked. Cancer discovered in single lymph node. Had left radical neck dissection, followed by 39 sessions of radiation coupled with cisplatin synergistic chemo. Had a peg feeding tube and I am glad that I did. Lost about 35 lbs which I have not regained and don't intend to. Effects of radiation made it hard to swallow and junk had to be cleared from my throat. But worse effect for me was that radiation eliminated any taste whatsoever for months. As a result I stayed on the feeding tube for about four months after my radiation treatment ended. When I could start eating solid food, it had to be soup or sauces, very wet. I was very distressed in not being able to taste, or as it did return to have my taste be limited.
All that said, it is now 1 1/2 yrs since last treatment. All taste is back, and I love being able to eat again. I still have significant neck pain (from muscle changes due to surgery) and dry mouth (for which I carry bottled water and Biotene mouth gel, which I love...).
I know everyone keeps saying to be patient and time will help. And it will, so take one day at a time, do lots of physical therapy and positive visualization, and get involved in a survivor's support group. There is a head and neck group in my area, and we meet monthly, and it does me a world of good. I would recommend that you find one near you.

grayharrin
Posts: 3
Joined: Aug 2003

My ENT prescribed Evoxac and this did put some moisture in my mouth, has anyone found any therapy for your jaws after radiation, I completed mine 2.5 years ago i still cannot open my mouth more than a 1/2 inch

gary0001
Posts: 1
Joined: Jun 2006

Has anyone had Nose/Sinus area cancer??? My husband has never smoked either and we just finished 6 weeks of radiation--still having problems with congestion, dry mouth and choking at night from drainage. Anyone?????

Eugene389
Posts: 9
Joined: Jul 2006

Hello,

I didn't have the nose/sinus cancer. Mine was in the throat area, but I did have dry mouth and plenty of thick mucous.

What I discovered mostly on my own was that if I gargled with luke warm water gently and let it drop down my throat and spit it out I would loosen all the thick mucous. I would do this repeatedly until I was satisfied that I had gotten as much of the mucous out as I could.

Then I took Biotene mouthwash (designed for dry mouth and found at any reputable pharmacy-they have gum and a gel too, but to this day I only use the mouthwash) and coated the inside of my mouth with this and made sure I breathed through my mouth-thus keeping the moisture in.

I would repeat the process frequently but as I healed up over time I would make less trips to the bathroom for a rinse.

Also, if you try this method get the biotene that is not flavored with mint or spearmint. I find that stings more than the plain biotene.

I'm nine years out and cancer free and remember that it was slow at first noticing any improvement, but eventually you could measure the improvement. Don't fight it psychologically, just accept it and over time you will see improvement.

You're both in my prayers, God Bless.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I'm with you, Cheeno! Tired of not eating. I did smoke, which is immaterial except that I have only myself to blame, but I have had about half of my tongue and I don't know how much of my right neck removed, along with the lymph nodes on that right side, went through chemo and 33 radiation treatments and all of the problems that people talk about and as a Type A type, really was ahead of the game coming out of surgery and going into recuperation, or so I thought... and then reality set in. I am still not eating in public, although my radiation therapy ended in January and it is now the first of Sept... I can drink anything, I eat soups, I eat mashed anything...but I want to be normal...it may be that this will never happen. Bread and beans and other things still stick to the roof of my mouth and my tongue isn't big enough or powerful enough to get up there and knock it down, to be blunt. One problem I found was that I set the end of treatments as goals. That is, I figured when radiation ended, when chemo ended, things would start picking up right away. Just ain't so. Those treatments are designed to poison you, as you know, and it takes time AFTER them to recover FROM them. So I would suggest that you not quit trying to drink, to eat, if your doctors advise you can, but that you also realize, you need time to heal from your cure. You really do. The frustration is a *****, I know. Take it slow, but as fast as you can. Be patient but be urgent. And remember that you need time to heal from your cure. Best wishes.

Happymamabear
Posts: 5
Joined: Feb 2007

Hang in there cheeno.. My husband is 3&1/2 years out from his last treatment.. Chemo and radiation. He also had the feeding port and he also was stage four... which totally panicked me because I lost both parents to cancer a few years ago.. one stomach..throat and the other pancriatic, my husband and son had the mouth cancer at the same time one had surgery and lost a quater of his tongue (my 24 year old son) and my husband had it in the roof of his mouth and tonsils he had radiation and Chemo. It seemed like a long haul but they are both better and I now have a new grandson from my son. Things look up eventually. But take care of yourself, I would up in the hosp. and almost died from A bad infection that I had and did not know it because I was taking care of everyone else. I was over a month to recovery and Paid the price for not taking care of myself as well as them.

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