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Tongue Cancer

sirneckjr
Posts: 1
Joined: Jan 2003

I was just diagnosed with squamous cell cancer at the base of the tongue. I have a small to mid-size tumor at the base of the tongue & 2 small nodes in the left side of the neck. My doctor wants to go in through the mouth to make an assessment. He has already recommended radiation & chemotherapy, & possibly Brachy therapy.

I would appreciate comments on your experience with the short & long-term effects of radiation & chemotherapy -- fatigue, dry mouth, trouble swallowing, tooth problems, etc. Thank you.

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

I had the same thing 31/2 years ago. I had radical neck surgery and 63 radiation treatments, but no chemo. The worst part was the radiation treatments, it takes your energy and ability to eat. The dry mouth takes time to get used to but there are products that help.
The good part is that it is all worth it, I feel fine and am in realy good condition. I just turned 62 and can do anything I want to.
Let me know if you have other questions.
Gary R

Hylandd
Posts: 3
Joined: Feb 2003

My husband was diagnosed with a nasophargeal type of squamous cell carcinoma. His main tumor was at the base of his tongue and was the size of kiwi fruit. The cancer had metastasized to atleast (1) lymphnode the size of a small sweet potatoe. The swelling, in his neck, is what first sent him to his doctor. A cat scan revealed the tumor at the base of his tongue.

Dave consulted with 3 different doctors about his treatment and they all agreed to begin radiation first along with chemo hoping to shrink or dissipate the tumor at the base of his tongue. He had 39 maximum doses of radiation along with 3 sets of chemo/cis-splatin 21 days apart. The main tumor at the base of his tongue melted away by the end of the treatments and the lymphnode mass shrunk to the size of a plum. Next a modified neck dissection surgery was preformed removing 4 lymphnodes and a couple of salivary glands. The mass, removed lymphnodes and salivary glands were clear of cancer.

During Dave's Radiation treatment's he received a drug called E-thiol to help save his salivary glands. This treatment has worked very well. His mouth is a bit dryer than before, however he does not have to use any special products for a dry mouth. He drinks more water than he used to,he needs more water on warm days, or when he is exerting himself physically. He has been very
fortunate that this treatment has worked well for him.

After the modified radical neck dissection, Dave received 3 more rounds of Chemo with Cis-splatin and 5FU, 21 days apart. This was done for added protection just in case there were any other cancer cells floating around in his system. It has now been 7 months since he was deemed cancer free. PRAISE GOD!

During the 7 months of treatment Dave lost 57lbs and received his nutrition and fluids through a feeding tube. He endured the temporary side effects from the treatments, like the sickness and radiation burns,with faith that it would end. The treatments were not easy! But he says he would do it all over again to beat the cancer.

Dave did need to go through some swallowing and therapy to get him eating again. He is doing very well now, is back to work, his voice has returned to almost normal, and is able to eat most foods.

Most of the short term side effects are gone now. He's not quite up to 100% on his energy yet, however everyday he feels better. We cannot tell you much about the long term effects because it has not been that long since his treatments ended. We can tell you that in reaching decisions for his treatment, we felt stongly that without the Chemo and Radiation the chances were more likely that the cancer could return. With Dave being 50 years young, never having smoked and in very good health aside from the cancer we are hopefull their will be no long term side effects from his treatments. The reduction in saliva(need to drink more water), and not eating a few foods is a small price to pay for being free of the cancer.

I hope our experience has been helpful to you, our prayers are with you. It is so important that what ever you decide to do, you believe in your doctors and the treatments they are going to give you. Have no fear for God is with you, he will see you through!

Dave and Geri

puzzled
Posts: 1
Joined: Nov 2003

My brother-in-law has recently gone through extensive radiation and chemo for squamous cell carcinoma of the soft pallette and throat. Since then he has expierenced a very strange phenamonon. Every 3 weeks or so he becomes very nauseated, runs fever, goes into a virtual comatose state (sleep and unresponsive) He has been hospitalized three times so far and all blood work, CT scans,etc. come back negative or normal. No one seems to know what is going on. Anyone have any suggestions? We're pretty puzzled. These episodes are pretty frightening and seem to be coming on a regular basis. All comments and suggestions appreciated. Thanks, puzzled

Hylandd
Posts: 3
Joined: Feb 2003

OOPS! I forgot to give you our email address:

alnaysmom@aol.com

Dave, and Geri

JB150
Posts: 4
Joined: Feb 2003

I had cancer at the base of my tongue and had surgery 10/01. They did a biopsy first then the surgery. I had my surgery done at UCLA although I live in Ok. They removed my tongue and made a free flap with stomach muscle. I did have radiation after the surgery. I had to have my teeth pulled before radiation. I don't swallow anymore as I now have a G-tube for feeding. I am as active as I can be I have to pace myself as I do tire more easily now. My mouth and throat are pretty dry most of the time. If you would like to e mail me here is my address jbtwelvefan@aol.com

answer's picture
answer
Posts: 1
Joined: Mar 2003

I have tongue cancer and would love your insight and experience

geno1149
Posts: 1
Joined: Apr 2003

My dentist first found my throat cancer. At first it felt like a sore throat then I couldn't swallow even water. So I had my dr refer me to a specialist and he diagnosed it as stage four throat cancer and I wen thru 6 months of intensive radiation and chemo therapy. The only support group I had was my family and my doctors.There were days that I prayed that God would go ahead and take me home, the chemo made me sick and they had to put a feeding tube in my stomach, I hated being a burden on my wife who took a leave of absence from her job while I took a voluntary layoff from work because it paid more that sick leave. I made countless calls to the cancer center at the hospitals and neither one had any support groups for cancer patients. Then I made calls to the Cancer Society and they referred me to a place called the Little Red Door and they couldn't help me. If it hadn't been for my wife and family and my church I'd never had gotten through it. I still have problems with my taste buds, and no saliva, since then I've had to have my Gall Bladder removed also and that is just one more thing that took a little more out of me. I haven't been up to par since my treatments. Its hard to get over colds etc. and my appetite flucuates quite a bit. So Could anyone please talk to me even though it's been almost two years I'm thankful to God I'm fine now but I would sure like to talk to other people to see how they coped with it. Thnx

nhpokey
Posts: 5
Joined: Dec 2003

hey geno- i also had throat cancer- vocal chords- had 43 radiation treatments- no chemo. It has been a year and I feel like I still have to deal with this monkey. I am glad it is over but still can't shake the feeling it will come back...

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