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

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  • Greend
    Greend Member Posts: 678
    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??

    Spicy food
    Reminded me of an incident right after I got married which was apx 3 years after I completed treatments. My wife loves to cook cajun food (yes Hondo she too is a **** azz) and I think she thought I was just being, to quote her, a "turd" because I wouldn't eat some of it. She would hide some normal spices I don't care for in food and then because I didn't say anything (hey I was a newly wed) just assume it was all in my mind. Well one day she fixed a meal and put in some very very spicy peppers. Those of you with dry mouth know that at times things stick and you simply can't get it out. Well that happened to me and it would not stop burning and it actually was starting to hurt, water, milk, cat piss, toilet water, nothing would get it loose. I finally just had to get a damp cloth and wipe out the inside of my mouth to get rid of it and it did blister the inside of my mouth.

    The bad thing is that before cancer I loved spicy food and peppers and still miss them to this day.

    After that she started preparing a "his" (wimpy) and "hers" (liquid fire) meals.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Greend said:

    Spicy food
    Reminded me of an incident right after I got married which was apx 3 years after I completed treatments. My wife loves to cook cajun food (yes Hondo she too is a **** azz) and I think she thought I was just being, to quote her, a "turd" because I wouldn't eat some of it. She would hide some normal spices I don't care for in food and then because I didn't say anything (hey I was a newly wed) just assume it was all in my mind. Well one day she fixed a meal and put in some very very spicy peppers. Those of you with dry mouth know that at times things stick and you simply can't get it out. Well that happened to me and it would not stop burning and it actually was starting to hurt, water, milk, cat piss, toilet water, nothing would get it loose. I finally just had to get a damp cloth and wipe out the inside of my mouth to get rid of it and it did blister the inside of my mouth.

    The bad thing is that before cancer I loved spicy food and peppers and still miss them to this day.

    After that she started preparing a "his" (wimpy) and "hers" (liquid fire) meals.

    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.
  • Hondo
    Hondo Member Posts: 6,636 Member
    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

    Hi Viver

    I too can’t handle hot pepper and the bad thing is that I grow hot peppers, but what I been doing is to blend a special pepper just for me. It is not hot but has a lot of hot pepper flavor just like the hot ones, it is part of my Hondeaux Habana Peppers.

    Wishing you well and welcome to CSN

    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    Greend said:

    Spicy food
    Reminded me of an incident right after I got married which was apx 3 years after I completed treatments. My wife loves to cook cajun food (yes Hondo she too is a **** azz) and I think she thought I was just being, to quote her, a "turd" because I wouldn't eat some of it. She would hide some normal spices I don't care for in food and then because I didn't say anything (hey I was a newly wed) just assume it was all in my mind. Well one day she fixed a meal and put in some very very spicy peppers. Those of you with dry mouth know that at times things stick and you simply can't get it out. Well that happened to me and it would not stop burning and it actually was starting to hurt, water, milk, cat piss, toilet water, nothing would get it loose. I finally just had to get a damp cloth and wipe out the inside of my mouth to get rid of it and it did blister the inside of my mouth.

    The bad thing is that before cancer I loved spicy food and peppers and still miss them to this day.

    After that she started preparing a "his" (wimpy) and "hers" (liquid fire) meals.

    Denny
    Nothing like a good Cajun Wife with the hot stuff at Gumbo time. Thanks for the laugh I am still picking myself up off the floor

    Can’t get Gumbo in Mexico but you can get Fire Hot Peppers :+))
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member

    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.

    Enchiladas

    Sweet my wife makes some of the best enchiladas in the world, now after all my treatment I can hardly taste them. But somehow I make my mind remember how they uses to taste and I am not sure but seams like I tastes them and just eat them up. Not sure if I am tricking my mine or if I really taste them, I don’t care as long as I get the feeling.

    Thanks
    Hondo
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    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.
  • Hondo
    Hondo Member Posts: 6,636 Member

    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.

    Cancer again
    One of the fears of having cancer is having it again, in my case my NPC cancer came back 3 times. I like everyone hope it is gone for good. Just remember you whooped your cancer azz 13 years ago and you can whip it again.

    Wishing you all the best in the fight to come.
    Hondo