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base of tongue- recovery questions

4mydad
Posts: 3
Joined: Jun 2003

Strange that in my first searches on this site I found a Heather and a Bob with similar issues to mine. My dad, Bob, has just finished his treatments for cancer at the base of the tongue. (It took a long time to discover this was the primary) He had a lymph node removed on the right side which showed squamous cell AND sarcoidosis within the node. I hear this is very rare and makes me nervous about possible undetected recurrances.

Anyway, his main complains right now are excessive mucous (he said it is worse than during treatment) and a pain/tingling/numbness down his right arm into the pinkie and ring finger. I was wondering if anyone else has ever had this. They thought it might be neurosis from the Cisplatin, but ruled it out.

Just general info for others, my dad's doctor strongly recommended a feeding tube be inserted before he even started treatments so that he wouldn't be so weak should he need to actually use it. He is so glad he did it. He has never had any problems with it, but is of course anxious to start eating regular food again.

Before each radiation session, he recieved a shot (Ethyol- I think) which made him sick to point of throwing up a few times, but again his doctor strongly recommended it. I feel lucky he was able to have it since many insurance companies won't cover it and it's very expensive. All the research I've done is indicating it decreases the damage to the kidneys and often helps with saliva production following treatments.

The doctors and staff at St. Luke's have been tremendous. I don't how my family would have survived this without them. His doctor even got teary eyed one day when he was really down! Talk about empathy!

I'm really just wanting to hear about recovery time and progress. I know it's different for everyone, but he is getting more and more depressed every day. Everyone has tried to convince him how great he's done (he even worked at three days every week) but I guess he is sick of being sick and is terrified of it coming back. (He was diagnosed with prostate cancer in 2000, had surgery for removal with clear margins)

Any words of encouragement would be appreciated!!

Heather

mayfly
Posts: 7
Joined: Mar 2002

Heather,

I had surgery and radiation for my base of the tongue cancer.. Did your Dad have Surgery as well.. let me know and I can give you a summary of what I went through.. now I'm doing great since diagnosed in Jan 2002. Surgery and radiation

Michael

hotshot
Posts: 1
Joined: Jul 2003

I had freeflap surgery at uclaor as I fondly call them "the Westwood Wizards"in May 2001...they removed part of my tongue,the floor of my mouth and my jaw on the rightside and replaced it with tissue and bone from my leg(my fibula),they did it twice, the first one failed I've had 2 other surgeries to place implants and improve the mobility of my tongue...I'll probably have one more...I take one day at a time,eat slow and chew as best I can, go to my local Wellness Center (on a regular basis) and am grateful..I am a teacher and at first I was quite speech challenged...but this March I was able to go back into a regular classroom and feel comfortable with my speech and myself...it takes time and some effort but things do get better

JeannaR
Posts: 4
Joined: Aug 2003

Hi, I am a 38 yr old girl going through it too. I had a lymph node 2 years ago, had surgery and right before Christmas we found the primary in my base of tongue. I had surgeries, 34 radiation treatments and now I started Chemo this past Friday. Its hard! I have the thick saliva that makes me puke, help. Anything you know of to get rid of it? I have a peg tube too, thank goodness. I want to eat too but still going to be a while with Chemo now a treatment for me. The thick saliva is my biggest complaint.
JeannaR, Chattanooga, TN

squishysands
Posts: 3
Joined: Sep 2003

my father got the patch on his neck for motion sickness -this helped cut it down -ask about that

TimMcc
Posts: 1
Joined: Feb 2004

Hi, I'm Tim and I suffer the same cancer you have I have had 36 Rad treatments along with the chemo (three doses) Now i'm on the road to recovery. I must admit that life has been difficult but take it one day at a time and you will feel better with every passing moment. As far as the Mucus I know what you mean. Mine is terrible and at times makes me feel like I want to choke. The best way to feel better is to gargle with warm salt and baking soda water. It will help cut down the thickness and you will expell it better. God Bless you and best of luck.. Tim

ebjjj
Posts: 2
Joined: Feb 2004

Hi--I am the mother of a tongue cancer patient. My daughter just was 29 when this was diagnoised, and it has been very difficult for her and the family. She had aggressive chemo from Oct through Dec, being on chemo for 5 days, 24 hrs. a day, then off for two weeks, and the process would repeat. Now she is finishing up 6 1/2 weeks of radiation. The last 2 1/2 weeks she is having rad. twice a day. She has many mouth sores, burns, swelling and much pain. The muscus is a big problem, as it makes her vomit at times. She can only sip water or tea, and gets all medications and nutrition through the feeding tube in her stomach. Any solutions to the thick saliva problem would be greatly appreciated. She also has not been able to speak for over 3 weeks---the tumors and swelling is all near her larynx. The dr. said that she may not feel any different for two weeks after rad. is over, but then, she should improve. Thanks to any of you, that may have any info. that will make this easier for her. It has been a nightmare.

fallows
Posts: 4
Joined: Feb 2004

I finished having radiation 8 weeks ago for cancer of the tongue. I first had the right side of my tongue removed and a flap was done removing a muscle from my chest. I also have a feeding tube which I still have and am using to supplement my eating. I also had the shots which gave me naseau and some vomiting. They put me on steriods and zofran which stopped the vomiting. I also had a lot of mucous which stopped about 5 weeks after the radiation was over. It was also way worse after the radiation stopped. I stopped the steriods for the first month but am now back on them to reduce the swelling and soreness so that I can eat a little better. I am eating soft food, lots of pasta, which slides right down. I am feeling better slowly and the steriods have really helped with the swelling and giving me some energy and an appetite.
It is taking a while but I am slowly feeling better. Little by little.

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