Loss of sense of taste with radiation

uvm1978
uvm1978 Member Posts: 33
edited March 2014 in Head and Neck Cancer #1
I am finished with radiation - thank god - and wondering how long it took for everyone's sense of taste to return. I got fairly concise answers from the physicians and techs about the other side effects, but the return of taste response was very ambiguous. Perhaps it does vary greatly, but I thought I'd just throw it out there as a poll question. Your responses will be greatly appreciated.

Comments

  • dennis318
    dennis318 Member Posts: 349
    Taste returns???
    Last Radiation as 2th of January, 30 days for me, and the simple items came back, I hated Chocloate, Coffee etc..eveythig I loved was taken away from me, First thing that came back was a lobster Bisque, No idea where it came from, Chicken Noodle Soup was next. Coffee Returned over the fourth of July, I know that long for me, now It's into Novemver alot of things returned, I have to becare due to the spices in everything, But I can eat the crap out of Sonic Chili Dogs and Root Beer Floats. I find out that I thrive on one thing at atime...2 weeks and lose interest in that food...Best To you Uvm and Good Luck To you. Dennis in TN,
  • JUDYV5
    JUDYV5 Member Posts: 392
    taste
    Everybody is different. What an ambiguous answer. At five months post treatment I can taste about everything - but most things taste different then I remember. Taste started back gradually. What I always found perplexing is that something would taste really bad one day and then fantastic the next. You just have to keep on trying. I think the high point was water started to taste like water. Congrats with finishing the radiation.
  • mixleader
    mixleader Member Posts: 267 Member
    End Of Radiation
    Congratulation on finishing radiation treatments. I truly hated those miserable things. My sense of taste almost totally disappeared about 4 weeks into treatment and came back pretty strongly after about 4 weeks post-treatment. I can taste most things again, although maybe just a tad different. At any rate, I will gladly accept what I have now as far as taste goes. Salsa and toothpaste still burn my tongue, however. The pain in my neck, well that's a different story.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    mixleader said:

    End Of Radiation
    Congratulation on finishing radiation treatments. I truly hated those miserable things. My sense of taste almost totally disappeared about 4 weeks into treatment and came back pretty strongly after about 4 weeks post-treatment. I can taste most things again, although maybe just a tad different. At any rate, I will gladly accept what I have now as far as taste goes. Salsa and toothpaste still burn my tongue, however. The pain in my neck, well that's a different story.

    It varies greatly.
    I am almost 19 months out and my taste is still not so great. If you blindfolded me while eating I probably would not be able to tell what I'm eating. I seem to do better tolerating sweet things. Savory things taste overly salty to me. Also things still burn.
  • RushFan
    RushFan Member Posts: 224

    It varies greatly.
    I am almost 19 months out and my taste is still not so great. If you blindfolded me while eating I probably would not be able to tell what I'm eating. I seem to do better tolerating sweet things. Savory things taste overly salty to me. Also things still burn.

    Six months post
    I'm six months post treatment. My taste starting returning at about the two month mark. As of today, sweets are getting better. Most are o.k. for one or two bites and then..."poof"...nothing, the sweetness is gone. Chocolate was a favorite, now...as good as it may look...the flavor is not good.

    Savory foods are best. Many fond memories of food in general...the taste doesn't match the memory very often. But it is definately getting better for me.
  • Kent Cass
    Kent Cass Member Posts: 1,898
    RushFan said:

    Six months post
    I'm six months post treatment. My taste starting returning at about the two month mark. As of today, sweets are getting better. Most are o.k. for one or two bites and then..."poof"...nothing, the sweetness is gone. Chocolate was a favorite, now...as good as it may look...the flavor is not good.

    Savory foods are best. Many fond memories of food in general...the taste doesn't match the memory very often. But it is definately getting better for me.

    Same
    - as with Rush. By 6-months after the last rad I discovered a positive taste in chili, and dressings put on chef-style salads, and have been addicted to both ever since. First couple months were just going thru the motions, and all that really registered was the texture of what I was chomping on. 19-months, post-treatment, sweets are okay, but not like they used-to be. It'll come around for you.

    kcass
  • Scambuster
    Scambuster Member Posts: 973
    Kent Cass said:

    Same
    - as with Rush. By 6-months after the last rad I discovered a positive taste in chili, and dressings put on chef-style salads, and have been addicted to both ever since. First couple months were just going thru the motions, and all that really registered was the texture of what I was chomping on. 19-months, post-treatment, sweets are okay, but not like they used-to be. It'll come around for you.

    kcass

    12 months and still improving
    My tolerance to spicy foods is still slowly improving. Also earer on, taste woiuld be there and then fade, but now it is much longer lasting. I find most natural foods, all taste fine and they came back first. It will get better.

    Scam
  • rozaroo
    rozaroo Member Posts: 665

    12 months and still improving
    My tolerance to spicy foods is still slowly improving. Also earer on, taste woiuld be there and then fade, but now it is much longer lasting. I find most natural foods, all taste fine and they came back first. It will get better.

    Scam

    Taste
    Congratulation's on completing your rad treatment's. As far as eating I first began by drinking smoothies that I would add fruit too & a scoop of protien too. My sense of sweet was the first to return at about two month's.It seem like it was taking forever & I was driving myself crazy with trying different thing's too soon. I finally backed off & stuck to my homemade shakes then slowly added bland creamed soup. Like cream of potato. Cream of wheat with maple syrup. Oatmeal. The plainer the better. Had the odd ensure & liked pudding cup's etc. Then at around five month's the savory kicked in slowly. I added egg's
    mashed potato's the smoother the better. Pancakes were great. Then salad with ranch dressing still cannot handle vinegar dressing's as they burn. I do notice I get bored easily & enjoy anything that is fresh. Made my own applesauce & would try bit's of this & that. I am now around nine month's post treatment & can manage most food's. Chicken drumstick's cooked slowly in the oven, perogies even pork chop with applesauce. Steak is a no go or anything that I have to chew forever. Buffet's are great! Creamy cheesecake is wonderfull. I suggest don't push it, but don't give up either. Stick to what work's for you & everything shall improve on a day by day basis. I wish you a smooth reccovery & make sure you rest when you feel the need to do so.
    God Bless
    Roz
  • Glenna M
    Glenna M Member Posts: 1,576
    dennis318 said:

    Taste returns???
    Last Radiation as 2th of January, 30 days for me, and the simple items came back, I hated Chocloate, Coffee etc..eveythig I loved was taken away from me, First thing that came back was a lobster Bisque, No idea where it came from, Chicken Noodle Soup was next. Coffee Returned over the fourth of July, I know that long for me, now It's into Novemver alot of things returned, I have to becare due to the spices in everything, But I can eat the crap out of Sonic Chili Dogs and Root Beer Floats. I find out that I thrive on one thing at atime...2 weeks and lose interest in that food...Best To you Uvm and Good Luck To you. Dennis in TN,

    13 months post treatment
    I'm 13 months post treatment and can now taste most foods, some have a stronger flavor than others but I get at least a little flavor from everything.

    I'm like you Dennis :) When I find something I like I will eat it for a couple of weeks and then don't want it again. I used to love butterscotch pudding but ate it for a couple of weeks and then haven't been able to stand it since. Switched to chocolate pudding for a few weeks with the same results - no I can't stand pudding.

    I started getting my taste back at about 2 months and experimented each week with different types of foods until I found the ones that worked for me. Don't get frustrated if it takes you longer than some of us, we are all different and what works for us may not work for you. Be patient and experiment!!

    Beef is still a problem for me, takes so long to chew it that I usually stay away from it, with the exception of my husband's beef stew. The meat is so tender that I hardly have to chew at all :) Ketchup, mustard, relish and anything containing tomatoes or vinegar are some things that you may want to avoid as they will probably burn your mouth and tongue. I can finally tolerate them in very small quantities. You may also find that some foods are extremely salty, I used to add salt to most of my food but have quickly learned to taste my foods first, some prepared foods are so salty that I can no longer eat them.

    Be patient and experiment, everything will return in time.

    Stay well,
    Glenna
  • Skiffin16
    Skiffin16 Member Posts: 8,301 Member
    Work in Progress
    I'm 17 months out and nearly everything has returned. Sweet being the one lagging, although it's better than when I first finished.

    I can't remember any longer what and when, but if something didn't taste the same, I'd give that up for a few months.

    Not all things are as intense or good as before, but definitely tolerable and I can taste them all.

    Starchy food took a while as did mixtures of flavors, soups, sauces, gravy, etc.... those would lose their flavor after the first bite. Meat has improved a lot since I first finished, that would take a while also. I think a lot improved after my saliva, which is pretty near 90% plus these days. Having to sip water with each bit like when I first finished, deminished flavor a lot also.

    It seems like the things not as good for me tastes the best...Burger King Double Cheese Burgers, Bacon, Fried Chicken.....LOL.

    Like everything concerning this, it just seems to take a long time....

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Skiffin16 said:

    Work in Progress
    I'm 17 months out and nearly everything has returned. Sweet being the one lagging, although it's better than when I first finished.

    I can't remember any longer what and when, but if something didn't taste the same, I'd give that up for a few months.

    Not all things are as intense or good as before, but definitely tolerable and I can taste them all.

    Starchy food took a while as did mixtures of flavors, soups, sauces, gravy, etc.... those would lose their flavor after the first bite. Meat has improved a lot since I first finished, that would take a while also. I think a lot improved after my saliva, which is pretty near 90% plus these days. Having to sip water with each bit like when I first finished, deminished flavor a lot also.

    It seems like the things not as good for me tastes the best...Burger King Double Cheese Burgers, Bacon, Fried Chicken.....LOL.

    Like everything concerning this, it just seems to take a long time....

    Best,
    John

    Meat.
    Meat is definitely a serious choking hazzard for me. It's like trying to swallow saw dust. I was able to get a chicken cutlet down at a friends on thurs. The little tender loin strip. Trying one tonight again. Big glass of chocolate milk by my side.
  • uvm1978
    uvm1978 Member Posts: 33

    Meat.
    Meat is definitely a serious choking hazzard for me. It's like trying to swallow saw dust. I was able to get a chicken cutlet down at a friends on thurs. The little tender loin strip. Trying one tonight again. Big glass of chocolate milk by my side.

    Thanks for the responses!
    Thanks to everyone for all of the thoughtful responses. You are a great group and I have used lots of your suggestions throughout treatment. Happy Thanksgiving to all! Deb
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410
    LOSS OF TASTE
    I am 4 1/2 weeks post treatment and I have no normal taste right now. I cannot swallow very well, but what I have swallowed does not taste anything like it is supposed to. I think the answer to this is all individuals will recover when they recover. I do not think you can put a timetable on it.

    Hope that helps. Good to see you back on the board, hope you are recovering comfortably.

    Mike
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi uvm
    For me it was about 2 Months before I started to taste anything, but it can go from 2 to 8 months depending on the person. Don't let it get you down as taste will come back

    All the best to you
  • julycrab73
    julycrab73 Member Posts: 1
    taste bud panic!!
    Congrats on finishing your treatments!

    I have never participated in any kind of chat or discussion on the internet but I promised myself I would as soon as I got my taste back! I spent my entire six weeks of head/neck radiation surfing the internet for some gleam of hope fearing my taste would never return. It seemed I could only focus on the negative, feeling I was going to be one of those poor people who can't taste a thing and have to struggle thru every meal. I was in a very bad place, as I'm sure many are. You are right, Doctors are very ambiguous about the return of taste. Its extremely frustrating and you just get tired of hearing "be patient!" Loss of taste and saliva is one of the worst experiences of my life. Much worse than my previous four surgeries including a radical neck dissection and basically open heart surgery to remove a tumor when my thyroid cancer spread. I got my taste about 85-90% back by 4 to 5 weeks and realize that is early. I am very thankful for that. I still have very little saliva and can't be without water, but I can eat most things. Sweet is still coming back and dry things are impossible, but it is so great to eat a meal. Good luck to all and I hope this helps at least one person feel better or have a little hope while going thru this terrrible thing. God Bless!!
  • Skiffin16
    Skiffin16 Member Posts: 8,301 Member

    taste bud panic!!
    Congrats on finishing your treatments!

    I have never participated in any kind of chat or discussion on the internet but I promised myself I would as soon as I got my taste back! I spent my entire six weeks of head/neck radiation surfing the internet for some gleam of hope fearing my taste would never return. It seemed I could only focus on the negative, feeling I was going to be one of those poor people who can't taste a thing and have to struggle thru every meal. I was in a very bad place, as I'm sure many are. You are right, Doctors are very ambiguous about the return of taste. Its extremely frustrating and you just get tired of hearing "be patient!" Loss of taste and saliva is one of the worst experiences of my life. Much worse than my previous four surgeries including a radical neck dissection and basically open heart surgery to remove a tumor when my thyroid cancer spread. I got my taste about 85-90% back by 4 to 5 weeks and realize that is early. I am very thankful for that. I still have very little saliva and can't be without water, but I can eat most things. Sweet is still coming back and dry things are impossible, but it is so great to eat a meal. Good luck to all and I hope this helps at least one person feel better or have a little hope while going thru this terrrible thing. God Bless!!

    Perspective
    Welcome to our forum....

    I can see where you are coming from, and I also was one that had wondered if my taste and salivary function would return. I too have around 90 - 95% of both returned.

    But one thing for me I figured out...even with the very minimal taste and saliva I had the first few weeks post treatment. I decided at that time, even if I didn't get any more improvement, I could live with it...being alive was/is most important.

    It's not a quality of life thing, at least to me....it was just taste and saliva. Both of which I could adapt to...but I'm thankful that I have regained much of what was lost initially.

    Best,
    John
  • Pam M
    Pam M Member Posts: 2,196
    Quickly For Me
    Taste started coming back quickly for me - I'd say I was tasting a lot six or seven weeks after rads stopped, including the elusive chocolate. Not only did it taste good to me, unlike most other things (taste was often "watered down"), chocolate was like super chocolate to me - I could only eat a small amount at first. By five months out, there weren't many things I couldn't taste, with the exception of chocolate ice cream - go figure - I could taste chocolate unless it was ice cream. Hope you don't have to wait a long time.