Dear Worried Mom --
When my husband Barry was first diagnosed, his ENT talked to him very seriously about getting through the treatment. As a young woman, she herself had gone through surgery and radiation treatment for a neuroblastoma. This was before the days of PEGs and so she had to swallow if she wanted to survive, she gargled with lidocaine and then swallowed a bit -- it hurt so much tears were running down her face but she did it. She told Barry that he *had* to keep swallowing, that she was monitoring several patients treated elsewhere who (in her words) "cannot swallow their own spit," even two years out of treatment, *despite* swallowing tests and lots of therapy. They had simply stopped swallowing and the muscles and tendons had atrophied, plus there was scarring and fibrosis as well.
Barry took this to heart and although at Hopkins, where he was treated, they want you to get a PEG before the start of radiation, they also stay on you to keep swallowing. Now they have all patients meet with a swallowing therapist beforehand and about 5-6 weeks after the end of treatment, the latter for a barium swallowing test. Problems identified are addressed, which might mean exercises, or perhaps dilation if there is a esophageal stricture, etc..
Hopkins is very serious about pain control -- which has improved a great deal since our ENT was treated. For example, the oxycodone that your daughter takes is only considered a short-action pain-killer and often not sufficient to control the serious pain associated with mucositis and other impacts from radiation. Most patients end up with Fentanyl (Duragesic) patches plus oxycodone or morphine for break-through pain. Some go onto oxycontine, which is a time-release oxycodone. There are also numbing rinses though our nurses didn't like them much -- if they numb the throat too much, there is a danger of aspiration of food/liquid into the lungs. Patients also can get acupuncture for intractable pain. Barry had 25 mcg Fentanyl patch (some patient get up 100 mcg patches), he would take oxycodone about 1/2 hour before eating and in some cases also Tylenol concurrently. Once in a while he also had to use the numbing rinse though he also didn't like it too much as once or twice he almost choked.
If your daughter is having too much pain to continue trying to swallow, you MUST talk to her doctors. Proper pain management is a PATIENT RIGHT (emphasis mine) and circumstances like that recounted by Anne-Marie (her son is only getting ibuprofen?!? My God!) is starting to verge on malpractice.
My husband ended up eating all the way through, although at the end it was very soft foods like scrambled eggs, mashed potoatoes, cream soups, Boost (or equivalent) etc. And even though he continued to swallow, the swallowing evaluation 5 weeks after end of treatment revealed muscle weaknesses as well as problems with his epiglottis closing completely. He was given a series of exercises which he did religiously and in fact, 16 months afterwards, still does once a day to avoid problems creeping up, as they can, due to late scarring or fibrosis. He now can eat normally and virtually anything, except very spicy foods (though even this is improving).
So first, you must try to get better pain relief for your daughter so she can continue to swallow, even if only water or other liquids. It is really important to try to keep those throat and tongue muscles working...
Gail
