CancerCompass message board discussion started by Moonbeam on 7/29/2006 http://www.cancercompass.com/message-board/message/all,6243,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am new at this but have squamous cell cancer of the mouth. I have had a right cheek disection done last year and now this past June I had an infected lymph node. It was removed with more cancer and they are going to do 6 weeks of radiation plus chemo 5fu and something else. It was recommended that I have a feeding tube but I am not wanting another surgery because I will also have to have a port put in for the chemo. I have read several messages about the need because of the intense sore throat. Has anyone out there gotten by without one. Thanks Moonbeam Sat, 29 Jul 2006 00:00:00 GMT it isnt what you are thinking. placing a gastrostomy tube is barely surgery. Compared to the dissection you underwent, a gastrostomy tube placement is a very pleasant walk in the park on the nicest day of the year with the sun shining and the birds singing. The mediport placement is on a par with the gastrostomy tube placement. Some would argue the gastrostomy tube placement is somewhat easier even than the mediport placement. These two surgeries are arguably not even surgery. The gastrostomy tube is so easy, even non-surgeons such as gastroenterologists and radiologists with the training to do it are allowed to do it, which they do all the time. Same for mediports which are routinely placed by interventional radiologists, much to the dismay of the surgeons who are constantly losing business to all these other specialties. I am not saying there is no risk - walking across the street carries some degree of risk of getting hit by a car. If the person doing the procedure is not experienced or having a bad day or did not get enough sleep there are all sorts of bad things that can happen from puncturing a lung to peritonitis. What I am trying to say is that if you are reluctant to have it done because you have bad memories of the dissection you underwent, don't be. They are like apples and oranges. Speaking of apples and oranges, you need to get that g-tube so you don't get down to 75 pounds with malnutrition and then die of some small infection because you were too malnourished to fight it. You've come this far. Be Strong, it will be ok, -Amnia Amnia Sat, 05 Aug 2006 00:00:00 GMT My husband is currently being treated with radiation and chemo (taxol and cystplatin) and had a feeding tube put in at the beginning of his treatment. It was a very simple procedure and he has had no problems functioning. So far he has not had to use it but he is just a little over halfway through his treatment. Check with your doctor first but i have been giving him a 400 I.U. vitamin E capsule (squeezing the liquid out of the capsule and into the mouth) 5 minutes before his treatment and 6 hours after his treatment (radiation). I also have him suck on ice chips 30 minutes before and after his chemo and radiation. He also receives an Ethyol shot every day before radiation. So far he has not had any mouth sores or mucosis and can still eat. He has to take small bites and chew a little longer than usual. His throat is a little sore but on a scale of 1 to 10 his pain usually ranges between a 2 or 3. I would recommend the feeding tube just in case. That way you don't run the risk of dehydration or not being able to eat. We also use distilled water only. For drinking and for cooking. Teri d. Sat, 05 Aug 2006 00:00:00 GMT My husband has a feeding tube, is the best thing that you can do if you going to radiation and Chemotherapy treatment it is a simple and is the best way to cope with the best nutrition that you need Sorcary Mon, 04 Sep 2006 00:00:00 GMT Hi my name is sharon and my husband had the flap surgery done in 99 he had radiation done in 97. For the past year he has had problems. He really has not eaten any solid food since sept 99. Now the dr. Says he wants him to get a peg tube. He does not want this, but really has no choice. How is your husband doing with it? Is it cumbersome? Any problems ? Do you get used to it ? Just another way of life ? If you coulds help answer any questions or give us any information about this i would ruly appreciate it, thank you so much, sharon Teeshirt Sun, 15 Oct 2006 00:00:00 GMT Hi - my name is Jean & I had rt. tonsil cancer one year ago with radiation & chemo. I had a peg tube put in in Nov. as my throat was so sore I could not eat or drink at all. After treatment I still could not eat or drink until I had two dilitations in Boston this summer. I still have the tube in as I am not eating enough to get the calories & nutrition I should have. I will not give it up until I gain more weight & feel comfortable I can eat total food. The procedure is nothing at all & anyone who ever had one usually says it is the best thing they ever did with this type of treatment. When they first talked about it I was horrified but now that I have had it almost a year it is just a convenient way to be sure to get nutrition & you really don't know it is there. Just need to be sure to keep it clean & I use calmoseptine ointment daily when changing the pad - this is a great moisture barrier & helps prevent infection. I hope this is helpful. Bij33 Tue, 24 Oct 2006 00:00:00 GMT hi, i just read your letter about you having a peg tube. my husband had the flap suregry in 1999. prior to that he had surgery for the throat cancer and radiation. now from the radiation, which has been giving him nothing but trouble for the past year and the drs tell us it is from the radiation anyway now he has to have the peg tube which he does not want but it has to be done. he is aspirating and has had pneumonia twice in the last month. do you have any tricks to handle everyday life ? any problems ? he has not had any solid for since 1999, so that change he has overcome. anything you could help with would be greatly appreciated. thank you tigergirl Teeshirt Thu, 15 Feb 2007 00:00:00 GMT My husband has had a g-tube (higher in the abdomen) for about 6 months now. He had one in 2005, but then did not need it, so they removed it. Getting him to understand he needed this one had nothing to do with problems he had with the other one, or even fear of problems he would face with this one. Even though his words as to why he didn't want it were because of fear of problems. (Which, the biggest problem has only been that it will leak sometimes, at least for him). The problem was emotionally, he felt that having this feeding tube meant he would no longer be able to function as a man. That this was some sort of defeat to him. You cannot tell him any differently, but learn how to deal with his feelings. Eventually he came around because he realized he needed it to keep up the fight. Mentally, it was the hardest choice he had to make. But, we figured it out and he made it HIS choice. He had the doctors change it out 3 times before he felt comfortable with what he has now. Taking care of it is not difficult at all. As I said, it's the emotional and mental part of it, for him that was the hardest to get through. But, we did it. Knowing it's not permanent to him, helps him alot. So much control of thier lives has had to be handed over. Now This! Hopefully it will work itself out, but be patient with him. And understand his feelings so you can work through them. I hope you understand what I am saying. This is how things worked for us. Good luck, God Bless. Lou38s Thu, 15 Feb 2007 00:00:00 GMT i just read your letter and thank you so much for all the information. he really does not want this but he needs to be done. nothing scheduled yet, but i am sure it will be in the next few weeks. thanks again, and god bless you ! Teeshirt Fri, 16 Feb 2007 00:00:00 GMT Hello,        I have just read your message and if it a matter of life and death, then get one. My brother had one put in and it has given him nothing but trouble. He has had an infection and is not able to get rid of it. The peg got put in him on Jan 19,07 and he is a mess poor thing. The smell and the discharge is awfull. We are trying to get the infection under control with medication but everytime he get's off of the med's the infection comes back. Be very careful with it and clean it always. I pray for every one on this site.                                     God Bless Crissy Wed, 28 Feb 2007 00:00:00 GMT  HI AND THANK YOU SO MUCH FOR YOUR RETURN MESSAGE. MY HUSBAND HAD THE PEG PUT IN ON FEB 28TH. THE CARE IN THE HOSPITAL ITSELF WAS JUST TERRIBLE BUT THAT IS ANOTHER STORY.ANYWAY THE TUBE IS WORKING OUT FINE. WE WERE SO WORRIED AND DRIVING OURSELVES CRAZY ABOUT GETTING IT. IT IS RIGHT ABOVE HIS BELLY BUTTON BY ABOUT 3 TO 4 INCHES. THE TUBE ITSELF IS ABOUT 12 INCHES. LONGER THAN WE THOUGHT. BUT HE HAS NO PAIN, JUST UNCOMFORTABLE SOMETIMES. WHAT A RELIEF HE DECIDED TO GET THIS. DR SAID HE IS DOING GOOD. HOPEFULLY WITH THE SPECH THERAPY HE GETS WILL HELP THE MUSCLES WILL BUILD UP AND MAYBE SOMEDAY HE CAN HAVE SOMETHING BY MOUTH, ALTHOUGH HE DOES SIP A LITTLE COFFEE. THANKS AGAIN & GOD BLESS, SHARON Teeshirt Fri, 09 Mar 2007 00:00:00 GMT if anyone out there can give any tips of care of the feeding tube or any info i would be greatly appeciated thank you -sharon - e-mail --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Teeshirt Fri, 09 Mar 2007 00:00:00 GMT Hi Sharon - sent you a private reply. We can't post our emails, which is a good thing, because of privacy. Lou38s Sat, 10 Mar 2007 00:00:00 GMT