Hello Hockeydad!
I don't often post, but I do read the forums regularly(almost daily). They have provided wonderful information to us. I will "pay back" all I have received by offering you a bit of knowledge from our "summer to forget." We are a few months ahead of you...treatment ended three weeks ago. Top items to note:
- The treatment is not as bad as you might be lead to believe it will be. My husband had very few side effects. No nausea, minimal pain. We were ahead of the meeds....don't be afraid to take them and do so before the symptoms present themselves. Mouth was a bit sore, as was his neck, but not bad and almost completely healed now
- Ask for ativan. It is used as an anti nausea med, but also reduces anxiety, My husband took half a pill an hour before radiation each day. Took the "edge off".....some days he even had 2-3 ml of liquid oxy with it. Made a big difference
-PEG- Our RO told us that he would not need one and he would be able to eat throughout the treatment. We had done enough research that we wanted to be safe and plan ahead. He told us that we were the first to ever ask for a PEG...usually the patient has to be convinced to get one. My husband ate throughout his treatment, with the exception of about 3-4 days near the end and the entire first week post treamtent. The major benefit we found in using the PEG was the supplemental feeding and hydration it provided. The key to getting through the treatment in good shape is proper hydration and nutrition. It is very difficult to be motivated to eat the amount you have to eat to counteract the amount of calories burned off by the radiation. We used the peg mostly as a supplement to get an extra 1000 or so calories a day. Additionally, we would puta few cups of water in it and let it drip through. The recommendation is to consume 10-12 cups of water a day, which is not easy for a healthy "normal" person. He had the PEG inserted the week before treatment, when he was feeling great and was not chemo compromised at all. He will get it removed in two weeks....happy to have it gone, but glad for the help it provided. And he maintained his weight throughout the treatment.
-Magic Mouthwash - very helpful the last few weeks of treatment....until now. winding down on the usage as his mouth is almost completely healed
-Xylimelts- OTC product that you place in your mouth when you go to sleep. It helps create moisture and eleviate dry mouth while sleeping
-if you don't have a recliner, or a really comfy chair/couch...get one. You will be tired and don't want to be in bed all day


My husband was treated at a top 10 CCC University Medical Center. We had a second opinion from a smaller facility and it was very similar. We live in a large city and had options....and chose the University based on the size of the program and the ability for the MO and RO to specialize in HN. From everything I have read on your posts, your case sounds straightforward and I am sure the teams have seen similar cases and are confident and very experienced.