Great question and one that's not discussed nearly enough in my opinion.

My last of 33 IMRT's was 5/24/06 so I'm about 3 1/2 months out. With the exception of the last week or so, I've been on a liquid diet for nearly 5 months. No PEG, I've lost about 30 pounds since the ND in March. During that time eating has been out of the question; I've developed what I can only call a 'food phobia'. Everything tastes horrible and only some things are even tolerable. During the last week, I've gotten to the point where I can force myself to eat a few limited things, mostly chicken breast and french toast washed down with milk or water. A few bites of steak, some hardboiled egg and some avocado. That's about it.

However, I feel so much better (almost 'normal') after eating solid food, I'm encouraged to continue to force myself to eat at least twice a day, but it's a chore.

Frankly, I feel angry everytime I face the prospect of eating. There's a whole lot they DIDN'T tell me about this treatment, including the trismus, L'hermittes and especially the lack of sense of taste. Now, probably anger is not the correct response; I should feel gratitude that the treatment has so far been successful as my first PET/CTscan last week was 'clear' with no sign of cancer. But then again, no primary tumor was ever discovered in the first place.

So, the short answer, for me, is that 3 1/2 months out from radiation and taste is only slightly, almost imperceptibly, improved.


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.