Hi all. My name is Terry a 61 year old male recently diagnosed with SQC at the base of my tongue. It started two months ago with SQC on my lowel lip that was successfully removed. I am scheduled to begin radiation treatments for 7 weeks beginning 7 September with Chemo on days 1, 22 and 45. I am not sure about the feeding tube, but thought I would try it without it first. Any thoughts.

I am not sure how this started, but I have been taking weekly injections of a product called Enbrel for my rheumetiod arthritis. Enbrel is known to weaken the imune system, and according to documents I have read from the American Cancer Society a weaked immune system has been known to allow SQC to occur. I therefore suspect it may have contributed, but have no proof. Has anyone else run across this.

It is great to know a support group like this one exists. Thanks much for your comments.

Terry

Terry,

Welcome to the OCF site! I'm sorry you've had to find us, but there's a great group of people here to give you support and to share experiences with you.

I was one of those who didn't have a tube during radiation, but there are plenty of others here who found the tube to be a necessity. It's extremely important to get good nutrition throughout your treatment, and if you find you need a tube to accomplish that, then go for it.

What stage is your cancer? Did they remove any lymph nodes? Are you being treated at a major cancer center? This kind of information will give us a better sense of your situation and help you get some responses from others who have had similar kinds of cancer.

Please keep us updated as your treatment goes along.

Cathy

Terry..you are going thru what everyone else here has , trying to figure out Why Me? Concentrate just now on what you need to do to fight this hellish disease. Try to bulk up on your calories , you need to pack on some pounds. The feeding tube was a blessing for my husband, he would never have made it thru without it. But, lots of our members here managed . Spend some time looking thru the old posts on the site ,there are not many problems that someone here has not faced. Keep in touch.
Take care.
Marica

Caregiver to husband Pete. SCC stage IV diagnosed 4/03 chemo /radiation, no surgery. Treatment ended 8/03.. doing great.

Thanks for your comments and concern. I am at a stage 3 or 4 as they are not yet sure if has entered my lymph nodes. Pet scans are showing nothing in the lymph nodes yet. I am being treated at a local hospital cancer center here in Green Bay Wisconsin where I live. I had the option of having the treatment done at Mayo Clinic in Rochester MN where I went for a second opinion, but have decided to have the treatment done locally so I can be home with the support of me family.
Terry

Terry, Welcome to the site. Like all of us, we're sorry you had to find us, but we hope we can be of some help.

I recommend the feeding tube, also known as a peg, to everyone going through this. It is a life saver in my opinion and should be installed before treatment as a matter of course. Some here on the site have made it through without, but I think it had to be more difficult. I lost 50 pounds with the tube, 25% of my body weight. I can only imagine how much I'd have lost if I hadn't had the tube due to not being able to swallow from the radiation. My opinion is get the peg.

I've wondered about weakened immune systems also as I heard that sleep deprivation is also suspect for allowing cancer to get started. I know a lot of folks in America are below normal sleeping patterns, so I wondered if that could be a contributing factor. Perhaps some of the more medically competent posters on this site can answer your question.

Your local hospital, is it a cancer center or just a department within the hospital? If not a bonefide cancer center, you should consider looking elsewhere. The expertise at full cancer centers have saved some lives on this site, and seven weeks is a small investment to make to be sure you are getting the best possible treatment with the most advanced techniques and equipment. Your decision, but you might want to reconsider if your local hospital is not a cancer center.
Hopefully, your lymph nodes are clear and you won't have as big a problem. Meanwhile, you will be in my prayers to get on top of this thing.

Hello, Terry.
My husband, Tom, will begin radiation on Sept. 7, as well. He is scheduled for 7 weeks as well, and is currently undergoing his second of 3 or 4 rounds of chemo.
We are definately going with the PEG - Tom's radiation doc refuses to start the treatment without it. The weight thing is already an issue for us. He started this ride at 155 (on a 5'11" frame) and he's already been down to 140. Today, he's at 143.5 - and not handling the chemo reaction well enough to have any desire for food. I'd have to think that unless you were obese, the PEG would be a requirement to get one through in as good a condition as possible.
WE are wishing you all good things. You are on our prayer list.
Nicki

Hello Terry,

Welcome to the Oral Cancer Foundation. I see you and I live about 20 miles apart. I live in Kaukauna, WI.
Did they tell you what type of radiation treatment you will be receiving? There are tqo types most get, 1. IMRT, 2, Field radiation kind of like comparing a sniper rifle to a shotgun approach.
Did they also tell you what type of chemo drugs you will be receiving?
The PEG tube is suggested in most cases. It allows you to make sure you input enough nutrients to maintain your current weight and have enough to heal also.
Welcome again and ask any question you want to, someone will answer.

Best Wishes, Danny Boy

Hi Terry,
When I was about to start radiation, someone on this board suggested going out and trying to gain 10-15 pounds before treatments begin. It was very good advice which I followed. I still lost 45 pounds but that 15 pound cushion made a difference.
While everyone has different experiences with radiation and feeding tubes, I found the PEG to be critical to getting nutrients into my system when I had absolutely no appetite. The problem I think is that once the treatments begin and the radiation effects kick in, the actual procedure for installing the feeding tube is more painful than it would be if installed beforehand. Further, it often takes a week or so to schedule the PEG installation, a time during which it is more difficult to remain hydrated and nourished.
Good luck with your treatments.
Best wishes, Sheldon

Take my advice, get the PEG. There is really no reason not to.
Minnie

Hi Terry,
If it were me I would go to Mayo clinic. Your odds for survival are optimized at a comprehensive cancer center. They may have provision for providing lodging for your family while there.

By the way it's actually SCC not SQC.

Were you a pipe smoker? -that type of cancer is fairly typical of pipe smokers. My grandfather had that.