What to expect during Chemoradiation?

I went through 41 days of this 19 years ago at the age of 49 for Stage IV cancer at the base of the tongue. Some of it may have changed since then but here is my experience. Prior to treatment, they installed a feeding tube and warned me to keep eating or I could lose the ability to swallow. The first week or two was uneventful other than adjusting to being pinned down to a table for half an hour. I counted the pulses to distract myself and relax. They gave me a medication to try and preserve my taste buds, but I could only tolerate it for less than three weeks. I came down with pneumonia go into the third week but continued the treatment. By then I was experiencing burns around my neck.

They gave me morphine to deal with pain, so I was very comfortable until the pain broke through. They had a special salve to help with the burns. Swallowing became very painful, and though my wife kept pushing me to eat, I lost 40 lbs. I found it difficult to do more than 7 Ensures/day. I couldn't say if chemo caused problems as the radiation proved to be distracting enough. The feeding tube remained in place for months afterward while I tried to get back to eating. I lost the ability to taste sugar, making many things, including chocolate, taste bitter. I couldn't go anywhere without a bottle of water as my saliva production had dropped to near nothing. Dry mouth is a difficult thing to deal with, and I would suggest getting a water pic. Gravy will be your friend, and things like cake crumbs and apple skins will become a threat for choking. All of it was over soon enough, but there were lingering effects like my taste coming back slowly and it's not the same. I can eat chocolate today, my saliva has come back somewhat. I now find myself getting cold more easily, and fog brain is a nuisance. I've learned to live with most of the inconveniences and have lived to see my grandchildren.

The one thing they didn't mention was that up to 80% of neck cancer patients will experience erratic blood pressure fluctuations called baroreflex failure. I experienced this years later and am still struggling to get keep it relatively stable. All of these things are inconvenient, but they are better than the alternative. Focus on getting through each day and know that it will come to an end. There is life afterward. Good luck!