#9965 03-23-2007 01:23 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Rob has had his peg tube in for 48 hours now ,and touch wood we are not having any problems.He has a roller ball type clip half way down which we have to open prior to feeds and close after feeds ,and at the end of his tube are two syringe connectors with sealed pop off tops.Unlike most people on this site we dont use gravitational feeding i just suck it up a syringe and push the liquid through.So far all is going well and he has no problems with it coming up or back.At the moment he is on three bottles of feed plus three hundred mls of water so total for the first two days is 900mls i think that is about 300 fl ozs.It seems straight forward but after reading all the posts on here i keep waiting for the other shoe to drop.
love uk liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#9966 03-23-2007 05:31 AM | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | Cisplatin kept Mike's blood pressure low during treatment. He had to stop taking his high blood pressure pills.
Peg Tube, it took a few days for his stomach to adapt to it. He had burning at first too. A little bit of stomach acid would leak out. Stopped after a couple days when the skin formed a tight vaccum around the tube.
He could still eat and drink normally when he got the Peg, so he had time to practice with it and work up to being able to have a full feeding. Try smaller amounts to start or extend the time it takes to get to your stomach. If your's is a push the formula through a syringe PEG, clamp it off a couple times and wait a little while before pushing the rest through. Mike would take 30 minutes for each feeding, then time to flush before and after. He complained it was like a full time job to feed himself each day plus flush and hydrate. No doubt, it was worth it, he made it through treatment and recovered very well.
Ginny
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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#9967 03-23-2007 10:24 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | Nathan,
I am sorry to hear the rough time you are having , I have no experience with PEG tubes, but I just wanted you to know that I am thiking of you and I pray that you get the strength you need to get through this !
Sharlee
Sharlee 35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#9968 03-23-2007 02:00 PM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Hi Nathan; I had the same set up. Just lost "my little friend" two weeks ago today. (had him "hanging around for almost 7 months) I'm not sure how you are using the syringe but if I reclined (in recliner) or laid down and my wife poured, gravity took care of most liquids I used. It's a slow process to begin with but the thicker the fluids are the slower it goes. It's easier to take smaller amounts more frequently. Be sure to keep it flushed good and clean. (the syringe helps do that) It sure wasn't convenient to start with but I was more than happy to have it about 2 months into treatment.
Best of luck, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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#9969 03-24-2007 02:47 AM | Joined: Jan 2006 Posts: 107 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2006 Posts: 107 | Hello Nathan, My Peg tube used to leak all the time and it drove my nuts , I finally got a plastic set of surgical clamps and closed the tube off like that and then taped the clamp to my chest, a big pain in the ass and I went through rolls of tape. I "dated" PEG for about four months and then just got tired of her, however "she" did a great job. When my throat got sore she was great for liqued medicines, remember almost all of the drugs you may be on you can get in liquid form, Rest easy my friend you will get through this, it is a major annoyance but doable. Keep your chin up and hang in there. Lenny | | |
#9970 03-24-2007 04:09 AM | Joined: Feb 2007 Posts: 10 Member | Member Joined: Feb 2007 Posts: 10 | Naqthan, My husband is using the peg tube. He has an iv pump that he hooks up to at night to get the majority of his calories while he sleeps. He tolerates this method muc better. He doesn't have that full bloated feeling. He still gets 3 cans throughout the day. As far as pushing the food through the syringe, our rad nurse said it's better to take the plunger out and let it gravity flow. Doesn't upset the tommy as much. Remember that the amount of calories per day is important to keep the weight up. Your dietician should have given you a daily amount to achieve. My husband's is 2200 calories per day, but he is getting 2485. Unfortunately he is still losing weight. We do alot of gatorade through the tube too. | | |
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