Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery (neck dissection) that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello Gamjagirl,

Welcome to OCF and I am so sorry to read of your father's cancer. You should be able to find tons of good info by searching on different key words under treatment. I went through surgery, somewhat similar to your father but simpler, and radiation about five years ago. Regarding radiation - eat as much as you can to keep your weight up. The first 2-3 weeks should be relatively normal regarding food flavors. But, once they change, it won't start to get better until a few weeks after your last dose of radiation due to the cumulative effect of the treatment. Get a vitamix (think discount is still available if purchased through our link) or similar to blend foods to make it easier to get calories. The list of foods that tasted normal or at least not terrible got really short for me - scrambled eggs, green beans, french toast, pancakes, vanilla pudding, vanilla ice cream, avocados, vanilla protein drinks, simple soups...but everyone seems different. You keep trying different stuff. I used to blend high calorie protein drinks with ice cream and avocados and whatever else was around. Best to track your calories and shoot for 2500 cal/day or whatever the doctor recommends. I had a hard time hitting that number every day and i focused hard on it. My starting radiation treatment weight was 160 and low a week or so after was 145. I am 5'11' so not much meat on me to start.

I also recommend keeping active such as walking, biking, light yoga, light exercise and making a schedule of daily touches with loved ones. It really helped my mood and kept me motivated. Journaling was powerful for me. I often got hard on myself wondering why I wasn't improving. I would back up in my journal and realize I had come a lot farther than I thought. Recovery from radiation is much slower than from surgery. I would see improvement every day or two after surgery. After radiation, it was multiple weeks to see it. Now, five years out, I have almost all flavors back. Some took 3-4 months to come back but others, the spicier stuff, took years. And, I still have be much lower on the spice scale than before. Best wishes for a smooth treatment and keep us updated.

Stay safe and keep the faith,
Nels