Hey Susan,
My surgeon gave me a lecture 2 weeks ago about avoiding a PEG at all costs. I completely disagreed with him. As an SLP, I work with people with reinstating oral intake after PEG all the time. I recognize that this is from the provider side at the moment since I don't start radiation til next week and I may, in time, "eat" my words but I think my "job" is to stay well and the only way I can do that is by getting adequate nutrition/hydration.
I will not be spending every waking moment of my day trying to swallow, worrying about swallowing, worrying about "catching up" on missed calories/fluid, coughing, choking, cringing in pain and trying to time a swallow so effortful it hurts and the accomplishment is 3 cc's!!
Reinstating oral intake after PEG placement and treatment is a process but I know that if and when the time comes for me, I will be getting a PEG so that I can enjoy those aspects of life that don't involve eating and also not have to worry about "using up" the precious calories I was able to get in!
I'd love to hear what other's think on this topic.
At this point - Pro-PEG!

Susan, glad to be of help to you. Chocolate milk is also soothing to a sore mouth. I drank lots of yoo-hoo and chocolate milk while going thru radiation. I lost most of my sense of taste but still was able to distinguish a tiny bit of chocolate with these drinks. Please pay attention and tell your doc if you arent able to take in the 2500 calories and 48oz water daily. I know Im nagging you but its more important than you realize. It can sneak up on you and next thing you know you are hospitalized for malnutrition and dehydration.

Glad to hear you are on the patch. Even at the lowest form its still much stronger than what you had been taking. It will take about 24 hours for it to kick in. Make sure to follow close to the instructions on the patch. Never fold or tear a patch and avoid taking long hot showers or baths. Those actions can result in the patch releasing too much of a dose and you will get very sick.




Jen, there have been many many discussions about the pros and cons of a feeding tube. Several of these "peg wars" became heated exchanges which was unproductive. Even with a medical background Im sure you will learn lots from the members who have gone thru this already. Swallowing becomes difficult even for those who have an easier time of it. Since you havent started treatment yet, I hope you are eating up a storm!!! Eat and enjoy it all now so you have no regrets or cravings down the road.

Sad to hear that "PEG wars" is even a term - we need to educate ourselves and determine what is best for us alone. This is a forum for personal experience - not bias. I suppose that's a fine line at times though!

Well, I have had an unexpected twist. I put the patch on Wed. evening and took two oxycodones four hours apart which enabled me to get some fluids in. Thursday morning I woke up sooo thirsty. The pain was better, though, so I immediately drank 12 oz. water. 15 minutes later I started throwing up. After about thirty minutes of that I had my husband take me to the ER as I knew I wouldn't be able to stay hydrated. Plus throwing up made the right side of my neck and my right ear really hurt (opposite side from surgery). Two liters of IV fluids and six hours later things seemed to be settling down, so they were going to send me home. I got up to get ready to go and promptly threw up again. So they admitted me instead. Also took off the fentanyl in case that is causing this. They still aren't sure if I picked up a bug or am allergic to fentanyl. They have me on IV fluids and IV pain med, and let me eat full liq. today. The hospitalist also consulted infectious disease, and GI. They are talking about a possible endoscopy to see if I could have a yeast or herpes infection of the esophagus which is causing so much pain. This is all definitely more than I bargainned for!

Susan

Susan
Well if there was ever a good candidate for a G-tube, you sound like one. Even with your throat pain etc, they can still put a feeding tube in with a fluoroscope instead of an endoscope (so it technically won't be a PEG). I had mine done that way a day after getting out of the ICU and all the salvage surgery at my absolute physical nadir so I know it does not have to be done when you have fully recovered
(and this is from a very anti peg combatant in those wars)
Charm

Susan, this happened to me when I was on the patch. I vomited for 2 days straight. My sister, who is an RN, was staying with me and on the 2nd night she woke up in the wee hours and came to my room, shook me and told me to get the patch off immediately. That's all it took! I was fine after that! Hope that's all it is with you too before they start poking and prodding unnecessarily! Good luck!
Pat

Jen

Rather than solicit OCF's poster's views on a PEG and risk igniting a new PEG war right before Christmas, I suggest you just do a search of this board on PEGs. It's precisely because the personal experiences of OCF posters vary so dramatically different that the PEG Wars started. What I learned from the Peg Wars was that the "bias" is that of the medical doctors who are split into two opposing camps. You are an exception in not going with your doctor's "bias" on PEGs. Some doctors insist on their patients getting a PEG or they won't treat them. Others discourage it and warn of swallowing complications. We all try to be helpful here and sometimes get carried away with how great a medical decision worked out for us personally so we share it and defend it to others. Add to that the trust we all have to place in our ROs on setting the radiation and it's not surprising that the patients of pro PEG doctors can't fathom the patients of anti-Peg doctors and vice versa. It's a highly personal decision and will be a perennial hot button here IMO.
We are all entitled to our opinions here, just not our own facts. The facts are that some patients don't need or want a PEG and others do. Don't even get me started on how unpleasant and troublesome a feeding tube is, especially when you will be on one for life.
Charm

Susan, Im sorry to hear you are having more problems. Its a good thing that you have gotten hydration. I hope its not the patch that is making things worse for you. Im surprised to read about the endoscopy due to pain.

Maybe Im missing something here?? People who are treated for oral cancer experience pain in places that other cancer patients do not. To me, it sounds like they are not familiar with oral cancer patients. Most of us who underwent radiation for OC had alot of pain that went right along with the treatments. From what you have written it does not sound like what you are experiencing is out of the norm. Just out of curiosity, ask the hospitalist how many oral cancer patients that he personally treats monthy or yearly.

Hope you feel better and can go home soon.

Good news-- I got to come home today! Yesterday the inf. disease MD ordered IV diflucan in case it is a yeast infection of the esophagus. The GI guy agreed with that but said he doubted it could be herpes since I am only getting radiation. He added protonix twice a day (an anti-acid, anti-reflux type drug) and gave me yet another magic mouthwash concoction-- this one is xylocaine plus carafate four times a day. He was not overly anxious to do an endoscopy unless I was still really sick on Monday (whew-dodged that bullet). At any rate, I felt much better this morning and felt like there was much less pressure in my throat, and the right ear pain is not as bad although it is still there, esp. when I swallow. I was able to eat some scrambled eggs and haven't had any more throwing up. I would hate to think the vomiting was the fentanyl patch, but am really scared to try it again (esp. after reading Pat's post above!) For now I am using the oxycodone that was for breakthrough pain.

Christine, I wondered about the experience with head/neck CA pts.myself but didn't read these posts until I got home. I did ask the hospitalist several times what good a GI consult and endoscopy was going to do! She said she really thought everything was due to radiation but there was that slight 1% chance it was something else so she wanted the GI consult. I guess I have to give her credit since I do feel so much better today-- I'm almost hoping it is yeast esophagitis just because there is something I can do for it (they prescribed diflucan for two weeks). I know I am still going to have pain related to the radiation,but even my RO had indicated I seemed to be having a "disproportionate" amount of pain for what he would expect at this point.

Thank you all again so much for your posts and your support. It is so helpful to get your input and just to communicate with people who know what you are going through!!!

Susan,
I got through it without a feeding tube and if you are committed enough so can you (although we are a minority here). This typically involves substantially more pain, weight loss and slower healing. I have to be honest, I don't regret my decision to forgo the feeding tube but for most here it has saved their lives.

There are many different formulations of "Magic Mouthwash" as it is compounded by the ordering physician. Mine was Lidocaine, Morphine and Benedryl.

Fentenyl patches are always incremented in 25 mcg steps. Do NOT increase your dosage without specific instruction from the doctor and always follow, to the letter, proper usage, application and disposal. NEVER USE A DAMAGED OR TORN PATCH! Fentanyl is the strongest pain med there is and can be very dangerous if improperly used.

Speak with your nutritionist about constipation prevention right away - it is an ugly side effect of narcotic pain management. It can be one of the worst side effects from treatment, many times even worse than mouth sores.

Adding to your last post, anything that alters the pH factor in the mouth can trigger a yeast bloom. I was on Diflucan for many months (even took a maintenance doage). You want to avoid it getting into the esophagus where it can readily go to the stomach and become systemic. Candida (or thrush) can be fatal if it goes systemic, although it is not that common. It is very difficult to treat if it goes systemic.