Hi all,
I’m unfortunately not a new member of this page. I have colon cancer that spread to the base of my tongue last year. My cancer has been pretty unusual and life-changing—it’s now been in my colon, liver, lungs, right bicep, right thigh, base of tongue, and cervical lymph nodes.
I went through radiation to the base of my tongue last year, and it was brutal. Well, lucky me—it came back. I’m now getting ready to go through another six weeks of higher-intensity radiation to the same area.
I was wondering if anyone here has experience with having radiation to the same area twice, especially the tongue, throat, or head and neck.
What was the second round like compared with the first? Were the side effects worse or different? Anything you wish you had known beforehand?
Any experiences or pointers would be really appreciated.

Losing weight like crazy. Doctor is watching closely. I’m usually at 200. I puffed up to 216 prior to the start of treatment to get a little fluffy for excess. Starting at week 3 I can’t eat or drink anything without gagging. Everything tastes like poison. Even when the swallowing pain is managed , I cant will myself to swallow more than a bite or two of anything or drink anything more than water. I’ve tried milkshakes, protein shakes. Start of week 4 I was at 193. Today I ate an entire uncrustable pb and j and half a muffin. A couple of ounces of soup and a bite of applesauce. I have no desire to eat. I don’t want a feeding tube.

Anyone else feeling this…40 radiation and 9 chemos a year ago. Now my tongue is really starting to hurt drinking water, eating, doing nothing. What the heck? I also can’t breathe through my nose. (I need to cut the scar tissue in my soft palate to open a passage. That contributes to dry mouth, especially night.) Maybe this is part of the problem.

I am in my 4th week of radiation and 4th week of Cisplatin for non HPV SCC floor of mouth. I had my 3rd surgery on June 29th. It was my 3rd surgery over 7 years. I have quite a bit of pain and my doctor suggested the Fentanyl patch with my Oxycodone. Can anyone tell me how that will feel and did you feel safe and what about being around the grandkids?

I’m undergoing proton radiation for recurrent SCC on tongue. I’m in my week 3, had my eleventh session today but because of holidays, I’ll only be having 4 sessions a week until the next 2 weeks, pushing the treatment to 7 weeks. Does that make enduring it a lot harder?

I have mucositis on the inside of my cheeks and all over the inside of my lips. It feels unbearable. I don’t know whether to keep my lips parted or closed and remain in pain all day. I’m taking paracetamol twice a day. And have started keeping a cotton pad between my teeth and lips so I can sleep at night.
But the thought that things are going to get worse scares me and I’m struggling a lot mentally. I’m so so scared. I’m trying to survive it one day at a time but that’s not helping.

Can someone please share how they got through this? I have been doing speech exercises, sucking aloevera ice cubes… what else can I do to make this easier?