Taste - Is There Hope?

HobbsDoggy
HobbsDoggy Member Posts: 276
in Head and Neck Cancer #1

I am 8 weeks out from my last radiation and chemo.  I had (hope operative word is had) neck cancer, unknown primary, one lymph node involved.  Had a neck disection, 7 weeks radiation and chemo.  I think I have some taste back, but it is so hard to tell if I am really tasting a few things or just a sensation in my mouth.  I can eat solid food, although its a stuggle most of the time.  Any spice just tastes hot and burns.

I am so thankful that the docs think they "got" the cancer that I know I should not worry about taste, but taste is very important to my and my quallity of life.

I did check out some of the dicsussions on taste and seems quite variable.  I tried to find some statistics on taste returning but no luck. 

I had a PEG tube removed about a week ago, had not used it sinde two weeks out from radiatiion  Did not lose too much wieght.

New to this discussion board and find it is so helpful.

Thanks All

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    hamburger and fries today, very good

    HobbsDoggy,

     

    Interesting name and welcome to the H&N forum. 

     

    You have been down the rough road now you are just trying to make the correct turns down Taste Bud Lane.  Some peoples taste buds return quickly and some never return, but generally everyone starts to get something back with time.

     

    For me at 10 months it is much better than at the beginning.  Even though I lived on smoothies for 7 months I was always trying things.  I always tasted salt better than sweet and it is better but the same today.

     

    Most of my favorite foods mashed potatoes and spaghetti, I could  not stand the feel and texture let alone the taste.  At 7 months the feel aversion simply went away and I now eat as before cancer.  I do not taste as well or enjoy as much, but I can sit down and eat regular meals (plus multiple glasses of swallowing beverage).

     

    Two funny things, I could taste sweet tea like normal from the beginning and as crazy as this sounds I could and can taste sweet corn (on the cob or nibblits) like normal, but I can barley taste the sweetest glazed donut you can buy.

     

    I still can not taste ice-cream, but I try on a regular basis.  I was always trying things.

     

    I was never mad or sad about the taste dilemma; I just figured it was the price to pay to get rid of the cancer.

     

    Good luck, you will get there,

     

    Matt

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #3
    Yes, it will come back

    Eight weeks is still fairly early to expect much in the way of taste.  I did get mine back, gradually, within a few short months. I still lack spit, which complicates things a bit, but I do have taste, and things taste great! Hard liquor may always burn, and most wines taste acidic, and desserts (except chocolate) have lost a lot of their appeal, but wow, salsas, onions, garlic, and all kinds of fruits and vegetables are so yummy they taste like they've just been invented. Beer is good, hence, life is good.

    Deb

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Welcome HD

    Like you have already investigated on here, many are different...

    Matt, is actually I believe an exception (in more ways than one, but we won't get in to that, LOL...), he is a little on the slow side as for his taste returning...at least I think...., but he is getting there.

    Most of us have some degree of taste and saliva return within around 3 - 4 months... But it is very slow for the most part, and wiith a lot of trial, error, and variety, we can figure out what works enough to survive.

    Eventually within a year or maybe even two years, I think most of us get about as much as we are probably going to have return..., again, we are all different, so that's not a given one way or the other.

    Myself, I could eat and taste enough to survive after a few months... But it took nearly all of two years to get I feel 100% of my taste back, and around 95% of saliva.

    Ice cream taking the very longest, LOL...

    Anyways, hang in there and more than likely in a few weeks, you'll start seeing some improvement. If something tastes off, give it a few weeks, a month or longer, then try again...

    Best,

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    "Hobbs"....I like it!!! :)

    Matt and I've stayed pretty much neck and neck (get it?? LOL) in the taste department as well as the experimenting department...I'm 8 months out of radiation, and 6 months out of the last chemo, and still get taste fatigue.  I can't remember when I improved from not tasting anything at all to at least tasting the first couple of bites.  I also can't taste sweets yet (I try icecream every single week tho....but have given up on maple bars).  I'm also waiting and wanting ketchup SOOO bad!   I fully expect my taste to come back slowly....it'd be fun if it spontaniously reappeared all at one time...what a rush that would be!!  But it's a waiting game.

    You're still barely out of treatment and in the experimenting stage.  I started out eating different Progesso soups, with thick slices of French bread (lots of butter on it) soaking up the broth....I couldn't taste a thing, but it felt SO good eating real food.   It's going to come....just gotta be patient.

    p

  • ditto1
    ditto1 Member Posts: 660
    #6
    phrannie51 said:

    "Hobbs"....I like it!!! :)

    Matt and I've stayed pretty much neck and neck (get it?? LOL) in the taste department as well as the experimenting department...I'm 8 months out of radiation, and 6 months out of the last chemo, and still get taste fatigue.  I can't remember when I improved from not tasting anything at all to at least tasting the first couple of bites.  I also can't taste sweets yet (I try icecream every single week tho....but have given up on maple bars).  I'm also waiting and wanting ketchup SOOO bad!   I fully expect my taste to come back slowly....it'd be fun if it spontaniously reappeared all at one time...what a rush that would be!!  But it's a waiting game.

    You're still barely out of treatment and in the experimenting stage.  I started out eating different Progesso soups, with thick slices of French bread (lots of butter on it) soaking up the broth....I couldn't taste a thing, but it felt SO good eating real food.   It's going to come....just gotta be patient.

    p

    Welcome HD

    Yes it varies on time as you can see from the other comments.  I had BOT cancer and ended treatment in August,  so im about 7 months out, and I been blessed to have my taste back and more resently able to eat more than just a few bites.  Still need to have plenty of drink when eating and breads are a little tough so not sure when I can enjoy a Double Cheesburger, but Skiffin assures me the day may come, I here its one of his favorites.  So do not get to down, its coming just be patient and keep us up to date on your progress

  • Dr.Ed
    Dr.Ed Member Posts: 22
    #7
    ditto1 said:

    Welcome HD

    Yes it varies on time as you can see from the other comments.  I had BOT cancer and ended treatment in August,  so im about 7 months out, and I been blessed to have my taste back and more resently able to eat more than just a few bites.  Still need to have plenty of drink when eating and breads are a little tough so not sure when I can enjoy a Double Cheesburger, but Skiffin assures me the day may come, I here its one of his favorites.  So do not get to down, its coming just be patient and keep us up to date on your progress

    slowly by surely

    Thats the way it was for me and  from the sound of it, for alot of folks. I finished rad. for BOT at the end of April and just recently became more comfortable trying to eat more foods. Things seem to happen in a progressive way, and sometimes before I realize it Im trying something that I would not have "allowed" myself to try a weekor so before. I still cant eat meat or much bread,and things are much spicier than they used to be. As long as I make myself try, I keep finding things I can handle, and enjoy. I too have taste fatigue, and also eating fatigue.I can eat a little,cough and after a small portion I tire of eating. But slowly things are improving. Taste is pretty much back but I can't tolerate spicy or citrusy foods. Ive heard that things come back at different times for everyone and Ive found it to be true..so keep eating and try to enjoy the little steps as things change.

  • Ingrid K
    Ingrid K Member Posts: 813
    #8
    Welcome

    Hi there hobbs...

    you are doing great as it has only been a short time (Seems a lot longer to you I'm sure).  It depends a bit on exactly what type of cancer you had as to how long your taste buds take to wake up again.   Seems that those with tonsil cancer get their taste buds back quicker.  I had tongue cancer, so for me even 2 years out, limited in what I can and want to eat because the taste is just not there. But I'm not complaining considering the alternative.

    Keep trying different things to eat...keep them simple and soft.  The more slippery the food -- the better.  Puddings, ice cream, apple sauce.  I lived on pancakes with lots of syrup for about 2 months.

    But you are doing so good at only 8 weeks out.   I was definitely still on the feeding tube at that stage.

    Keep on doing whatever you're doing as it's working.  And don't get discouraged...we tend to measure things in weeks not days.  You learn to be patient.

    Wishing you a continued good recovery.

     

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