On 11/1/22, a squamous cell carcinoma was surgically removed from my left retromolar trigone. PET indicates slight activity in area of surgery. I start rad 12/21. After recovering from 15-16 days of intense mouth and throat pain after surgery, I began feeling a bit better, but now I feel extremely weak and don’t know what to do. Surgery resculpted the inside of my mouth so that dentures no longer fit comfortably, so diet is limited to liquids and really mashed up foods. Any suggestions?

If you’ve been on strong pain medication, that could be part of your problem, combined with a decrease in calories and good nutrition. This will only get worse as you start radiation treatments. When I went through my radiation, I slept away most of my days with no energy, and no appetite. I lost a lot of lean body mass and weight as a result of all this, and after losing more than 10% of my total body weight, was put on a PEG feeding tube. While I didn’t want it, it turned out to be a minor procedure and having it was no big deal. Using it actually gave me some of my energy back and while I was still on pain medication for the mucocitis sores the radiation was causing, I began to slowly add weight.

It will be awhile before they can reline your dentures and you probably won’t tolerate them well during radiation. As the soft tissues begin to heal at the end of radiation, they can initially reline them with a soft liner vs hard acrylic. When the new contours of your tissues stabilize then you can have them hard relined.

I would suggest starting to blend some high calorie smoothes you can drink to get your energy back and not lose weight during all this. Your body is going to be in constant repair mode and it needs the calories and good nutrition to heal the damage being done each day. If you don’t give it that, it will get the proteins it needs for repair by breaking down your muscle mass to get it. That you don’t want. B

Dear Brian, Many thanks for your detailed and sobering overview of what I might expect on my continuing oral cancer journey. I'm just a week from the start of radiation therapy and already having trouble nourishing myself adequately. As you suggest, that problem will grow in magnitude as rad begins. I pray for your continued recovery and remission. Thanks for offering your personal experiences. Sincerely, Don Amerman

You can do this, but it will take positive attitude and willpower. Just focus on the fact that this is a short period in the timeline of your life. Like many other things good and bad, it is transitory and does not go on forever. One day you will exit this treatment and shortly thereafter life will get back to normal. You will be changed by it. In some ways physically, but surely mentally. Having endured this, many people feel emotionally stronger than ever. While you are out of control of much of the process, apply yourself where you can control. You can choose to eat tons of calories and choose things high in protein and other nutrients that will keep you physically strong through this. It will make a huge difference. Solid food wasn’t possible for me till after the treatment ended and the sores in my mouth healed up. But I became a master at blending real foods and whey protein powder and along with putting some of that in my feeding tube, I drank some as well to keep my swallowing reflex heathy.

I had friends that called an emailed me regularly, there was nothing like an online support group in those days. Their support was key to my mental health. The jokes, and pin up girl pictures they sent didn’t hurt either, the message was clear….they were all waiting to have me back in their lives. Combined with a wife who was strong when I wasn’t, who went to my doctors with me, took copious notes and asked a lot of the questions, I had a home team that was there through it all. These things all matter. Build your network of supporters, lean on the people in this group. Eat well when things taste like cardboard and your mouth is sore, and push through to the other side. Normal life and the enjoyment of it is waiting for you there. Brian