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.
Hello Terry,
I know you have alot of doubts, concerns and questions. Great! Keep firing them in our direction and you will have no end of personal experiences coming back at you. I understand your reluctance to have a PEG, but unless you can force yourself to drink water even though it may taste like oil, I would have one.
It is encouraging that you have had a PET scan. It tells me you have good insurance and doctors that are leaving nothing to chance. I can't imagine you would have any Rad Treatment other than IMRT, also. I wouldn't waste your mental effort on trying to figure out the why of your recurrance. Concentrate on bulking up (out) and maintaining a positive attitude.
You have support here through the Forum, our thoughts and our prayers.
David
I don't blame you for wanting to stay in GB for the treatment. Can the doctors there coordinate with those at the Mayo Clinic? Is the GB center a part of the U of Wisconsin Comprehensive Cancer Center?
We're from Wausau, so have special concern for you. Keep us all informed how your treatment progresses. My husband is the patient. He says he would recommend the feeding tube. I am sure it would be easier to have it in place before you start the radiation and chemo.
Thinking of you.
Lowanne
I have advised many on Peg tube. You will be ahead in the game to either get the tube installed or consult with a gastroenterologist, hold he/she in reserve. I opted for the latter. I consulted with a gastro in a large practice and was assured that when I was ready for the peg it would be installed with 24 hours after calling and it was.
Darrell
Wow, I am impressed with all the responses and best wishes received to date. Thank you all very much for your support.
I start IMRT on 7 September and am scheduled for 7 weeks at 5 days per week. I will also be given
Cisplatin on days 1, 22 and 45. Like all of you I am uncertain exactly what to expect as I go through treatment, even though the Doctors have told me likely scenario's.
The reason I decided to stay at home for the treatment is that Mayo would offer the identical treatment. The local cancer center has discussed my condition with Mayo Doctors and all agree there is no reason for me to live at Mayo for 7 plus weeks. I am trying to eat everything I can get my hands on now in anticipation of the weight loss. From your comments I am leaning toward having the PEG inserted, but will make that decision tomorrow when I meet with my Doctors one last time before I begin treatment.
All the best.
Terry
Terry,
Enjoy all the great tastes now...
Just remember if you have any questions to fire away. Your treatment will be over before you know it...then the real fun begins. It will be tough but because you have come here you will never have to travel the path in the dark. Best wishes for a speedy recovery and success in blasting the beast.
Ed
Hi Terry. Mom mother was diagnosed with SCC after using Enbrel for 3 years for treatment of rheumatoid arthritis. One oncologist has mentioned a possible link. The rheumatologist tht prescribed the Enbrel denied any link. I've found a website that you may be interested in. A lot of people have posted medical problems they feel are directly related to Enbrel. If you're interested the site is aboutlawsuits.com. I think you'll find it pretty informative.