Adenoid Cystic Carcinoma - after radiation, how soon do you feel better, tastebuds return?

Sir Viver said:

Still can't have spicy food......darn it
It's been six years since my squamus cell carcinoma stage 4A, I had 6 weeks of 25 minutes radiation along with a few splashes of chemo. My taste buds finally came back but I can't eat anything spicy and even catsup heats up my mouth and tongue. It beats the alternative but I really miss hot, spicy food. Any remedies I'm missing??

Hal61 said:

Spice
Hi Sir, welcome to the forum and glad you posted. It's always great to hear of long-term survivors. I'm a year and a half out of treatment with about the same treatment, plus a partial neck dissection. That's an interesting question at your stage of recovery. I can take a little spice now, a little heat, but I couldn't take a bit for well over a year. My tolerance seems to be improving, Mexican food being my measuring tool. I've wondered if, after healing, a person might be able to increase the tolerance by beginning with just a tiny bit of spice, then increasing it? I don't know if you can train taste buds. I hope it improves for you.

best, Hal

sweetblood22 said:

water, milk, cat piss, toilet water....
Omg. I about choked on my rice! Lol.

I was never one that liked or could tolerate hot foods, so I don't miss it now at all. I cook with, and love, a lot of herbs and spices, because I don't like 'bland food' but I cannot use salt or pepper because it burns. Course my tongue still hurts two and half years later, so I'm not a good measure. 'Normal' people might think my food lacks seasoning because of the lack of salt and pepper, but my best friends never used it either, so they don't mind.

I managed to make an enchilada sauce from a roasted poblano and two roasted bell peppers. It was still hot to me, but it was tolerable and not unpleasant for me to eat.

I hope it gets better for those that struggle and you may some day, be able to eat what you like.

longtermsurvivor said:

I understand to be highly variable. My radiation treatment was 13 years ago. The day I lost all sense of taste was the most distressful of my entire treatment. Dry mouth was a very significant problem at the end of treatment, but I didn't end up with a tube. I lost tons of weight just because food didn't taste like, anything....

For me, the taste came back very gradually, and some of that was not much fun. Foods tasted, but they tasted wierd. The first thing I could taste at all was vanilla, so I ate lots of cookies and drank tons of milk for awhile:) Over the years, my sense of taste completely normalized. But it did take years, maybe 4 or so. The last things I could eat and say they tasted the way I remember them were citrus fruit and chocolate. Don't ask me why.

Saliva continued to improve for many years for me. I stopped carrying water eventually, and havn't been awakened at night by dry mouth for many years now.

Unfortunately for me, I have another malignancy now, and am preparing to do this all over again. But the field of irradiation will be much more restrictive this time, so maybe my experience will be diffferent.