Thnak Rob. when did you get hydration infusions, were they given through IV.

Roma,
Yes, I needed IV infusions. There was about a 3+week period that I could not take anything in, that's when I was infused. A little secret that they taught me for my nausea was to cut the skin and a bit of flesh off of an orange, squeeze it and breath it in. It was amazing how well that combated nausea. During this period, my mucosis was soooo bad that I could not swallow at all, everything was spit out into a bag or cup. I carried a plastic cup with me at all times, lined with orange infused paper towels. You have a bit of a challange ahead of you. Patience and attitude will help very much. Best of luck and we are all here to hold your hands.
All the best,
Rob

My Radiation Oncologist is also opposed to PEGs based on his experience that patients can do very well without them. I was one such patient who got through radiation and chemo with no PEG. I also never got dehydrated, did not need any IV infusions, etc. I did end up living on Ensure Plus for a while and recovered not only my swallowing ability but also was able to eat all types of food not just soft stuff very quickly after TX was over.
Now that I am on a feeding tube for life, I will concede that it would have been much easier for me to get a PEG but if I had a do over, I would once again refuse a PEG.
I know how caregivers here worry so much about a patient not getting a PEG. IMO that concern is fueled by the misleading information given by many doctors. It's technically true that getting a PEG halfway thru radiation is almost impossible, but that's only because PEG stands for a tube put in with an endoscope (the E in PEG)and your throat is a mess with radiation. My experience is that it's no big deal medically at all to get a feeding tube put in with a fluoroscope instead of a endoscope down the throat. It's the same tube, going to the same place. When I had mine done after the surgery required it, I was down to only 119 pounds - much lower than my lowest weight during the first radiation, I was dehydrated and only two days out of the ICU.
Here I will diverge from David and say that if I had to get a feeding tube, having had both a nasal tube and a g tube, I would get a g tube.. Everybody is different and for some people it just doesn't matter. But it mattered to me a lot so I continue to post in support of fellow "just say No to PEG" patients

Roma,

I went through treatment without a Peg or nose feeding tube even without Ensure. Yes at times it was very difficult but I just pureed soups and oatmeal and ate them everyday. The zylocaine viscous was very helpful when my mouth got really sore. I did needed to be hospitalized for 5 days due to dehydration and they put me in IV drip but I would do it all over again. From reading other posts, many do have swallowing issues from the PEG which I don't have at all. If your husband is determined not to get the PEG, then this determination will also get him through his treatment. Good luck with the treatment and always post any concerns you have on here, I found this site to be so helpful during and after treatment, when you are so unsure about everything.

Minh

@ charm2017 Thanks for a detailed reply. To my understanding regarding the feeding tube, you are still on some kind of a feeding tube. what is g tube?.

@ Rob Thanks. So eating can get tough after 3weeks due to mucosis. Docs are insisting on him to get PEG. Docs are saying the kind of radiation they are giving him is full blast and a larger area is getting treated. But my husband is not willing to get it.

@ Minh my husband was on endocet now docs have prescribed him medicine that has morphine in it. Thanks Minh for replying.

OK so all of the above posts only reinforces the fact that we can alll be different in our reactions to the same treatment.

First off forget about Ensure, get him to try Carnation Instant Breakfast VHC as it has a whopping 560 calories in the same 8 oz can so that means regardless of how he gets it to his stomach he won't have to open as many cans nor waste as much time nor endure as much pain, etc to get the necessary calories.

A PEG is a type of G tube in that it requires an insertion thru the the skin into the stomach. The nasal tube requires NO surgery. It takes a few minutes at most to feed the tube thru the nose into the stomach. Then you must be x rayed to make sure the tube is in the stomach. Then the metal rod is pulled out.

Thank you so much David. I will get him Carnation. He is going to be very happy to learn about Carnation instant breakfast.
I also know about nasal tube now. Thanks a ton !

I think it is very important to consider the risks of deciding to turn down a PEG.

Although in an emergency, many major CCC's can put a PEG in without losing any treatments, a break in treatments due to adverse side-effects is undesirable and may lead to a poorer outcome.

In most case additional doses can not be added to offset the SCC re-population that can occur during a break in treatment.

Several recent clinical pilot studies using OPET (PET/CT) studies of SCC tumors (primary & Lymph secondary) have found that cancer cell re-population seems to begins after just two days of a break in treatment when the cumulative radiation dose is below 6gy and within five days of a break in treatment if the cumulative dose is below 46gy.

18-F-FLT PET/CT scans and 18F-FDG PET/CT scans were obtained at a total dose of 2, 6, 10, 20, 30, 40, 50, or 60 Gy (i.e., after radiotherapy) to provide a range of Total Dose points for assessment of cell proliferation.

Scans also compare 18F-FLT with 18F-FDG with regard to their ability to differentiate residual tumor from inflammation.

The newer OPET (CT/PET) scanners using F-FLT instead of F-FDG tracer can differentiate between cancer re-population and inflammation.

Apparently studies are also being planned to determine probable difference in HPV- verses HPV+ breaks in treatment since HPV+ SCC is thought to be more sensitive to RT.

Roma, I am one who favors the PEG tube. Ive gone thru OC 3 times and have used a feeding tube each time. Minh is a rarity, most people who do not get the PEG struggle with nutrition and hydration. It seems like she is one who had an easier time of it than most.

Its so much better to have one and not need it than to need one and its not there. Then you have to wait a couple of days for all the paperwork before you can get one. Ive seen many people go thru this without it and end up getting an emergency one anyway. I also had a port for the chemo, which was very helpful.

The Carnation Instant Breakfast is different than the Carnation Very High Calorie formula. The Carnation VHC is 560 calories per can. When things get rough and swallowing is difficult, getting the most calories per swallow is very important. Its not easy to find. I order this thru the Amazon link right on the forum pages so that OCF gets a tiny kickback.

@ Don I am really confused now. I will have a good discussion with my husband regarding the tube. As you said there could be risks involved by not having it, I guess we will make our decision today as the docs want it in by Monday.
@Christine I am realize that swallowing does gets difficult after a while and every calorie counts after reading so much in the forum.
I will post once we decide over PEG.
Thanks to both of you.