help with eating

mokus
mokus Member Posts: 63 Member
in Head and Neck Cancer #1

I have only 6 rads to go and two chemo, but am able to eat things and swallow fine.  I need help please making things palatable.  I can taste all of the components of whatever i am eating but something is still missing that makes swallowing the food difficult.  Is it just the lack of saltiness or sweetness?  I try anything looking for something I might halfway enjoy, but it is very difficult.  I produce already excess amounts of saliva but it seems to be a very sticky saliva that I just spit most of it out.  No problems with dry mouth anymore.  Can someone offer some advice on what I might derive some satisfaction from please?  Or how I may doctor some foods up to make them better?  What have you guys had success with?  Is it too early to think about this?  Is my taste, saliva, etc going to change again this late in the game?  Is this and injdication that tatse may improve sooner than I expected (fully), or is it just the standard "everyone is different" that I need to wrap my mind around and just turn off Mr. Obssess-alot.

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    First of all...HOORAY!!! You're

    in the single digit countdown on rads!! WTG, Mokus! 

    I'm sorry to say, food doesn't have a taste at this juncture of treatment....my food tasted a lot like sheet rock....eating became a duty....something to keep me alive until treatment was over, and I could begin to heal.  I drank Boost VHC (very high calorie), pretty much exclusively....pop the top of a carton for 540 calories in 12 swallows....duty done Smile.  I did eat some scrambled eggs here and there, and my sister made me cheese and cauliflower soup....I could taste cauliflower for some reason.  What I did learn tho, was vegitables had more taste than anything else...peas, beans, cauliflower....nothing that is sweet had any taste at all (and basically, still doesn't at 3 years out) .

    p

  • wmc
    wmc Member Posts: 1,804
    #3
    I wish I could....

    See you are doing great. I do wish I could help with eating. I never had chemo so I don't fully know what it dose to tast. I have it can and most of the time will as Radiation can too. All I lost was all smell. I used crushed garlic and can't smell so I put to much in by a lot. My wife came to the kitchen and had tears in her eyes from it. Now when I ate it I knew I had too much and paied dearly for it. Just try different things and seasonings as well to see which are effected. The good news is it does clear up some and get better. Now for the thick mucus that can come from what you are eating. Water will thin the mucus. All dairy will make it thicker, cheese, milk, ice cream, black pepper will make you produce more stomach acid. You might try pudding and see how they tast, lemon, butterschotch, chocolate. Try adding a small amount of thyme to your meat to add flavor.

    Bill

  • mokus
    mokus Member Posts: 63 Member
    #4
    phrannie51 said:

    First of all...HOORAY!!! You're

    in the single digit countdown on rads!! WTG, Mokus! 

    I'm sorry to say, food doesn't have a taste at this juncture of treatment....my food tasted a lot like sheet rock....eating became a duty....something to keep me alive until treatment was over, and I could begin to heal.  I drank Boost VHC (very high calorie), pretty much exclusively....pop the top of a carton for 540 calories in 12 swallows....duty done Smile.  I did eat some scrambled eggs here and there, and my sister made me cheese and cauliflower soup....I could taste cauliflower for some reason.  What I did learn tho, was vegitables had more taste than anything else...peas, beans, cauliflower....nothing that is sweet had any taste at all (and basically, still doesn't at 3 years out) .

    p

    eating

    thank you very much phrannie. i will try some veggies then.  I dont have trouble with maple oatmeal w/berries, or unsweetened cold cereal. corn flakes taste pretty much as they did before treatment. i can do tapioca pudding and taste all but the sweetness.  even a good brat, i can taste everything, but no salt and still too spicey.  ty, ty.

  • mokus
    mokus Member Posts: 63 Member
    #5
    wmc said:

    I wish I could....

    See you are doing great. I do wish I could help with eating. I never had chemo so I don't fully know what it dose to tast. I have it can and most of the time will as Radiation can too. All I lost was all smell. I used crushed garlic and can't smell so I put to much in by a lot. My wife came to the kitchen and had tears in her eyes from it. Now when I ate it I knew I had too much and paied dearly for it. Just try different things and seasonings as well to see which are effected. The good news is it does clear up some and get better. Now for the thick mucus that can come from what you are eating. Water will thin the mucus. All dairy will make it thicker, cheese, milk, ice cream, black pepper will make you produce more stomach acid. You might try pudding and see how they tast, lemon, butterschotch, chocolate. Try adding a small amount of thyme to your meat to add flavor.

    Bill

    eating

    Thank you bill.  I can work with that.  I LOVE garlic and thyme.  will try some other puddings too.  ty much

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Better Than Expected..

    I would say you are doing much better than the norm... (abi-normal) for me..

    I pretty much gave up on solid food about 3 weeks into rads, until about a month or so post.. Opting instead for mainly Ensure Plus, and maybe a few sliced peaches in syrup..

    I could faintly taste both.., but that's about it..

    I also had to take a sip of magic mouth wash, to numb up first, drink the Ensure (or two).., chase it with a few peach slices to keep the swallower working.. Then follow-up that with a crushed percocet or oxicotin for the coming pain..

    Also took about 3-4months to even remotely get back some taste and saliva..., and all of two years to completely get all taste back and around 95% of my saliva.

    Now at six plus years post, I'm clean, clear and can eat or drink anything I want..

    Hang in there.., hopefully you won't back track.., but you never know.. Just figure that eventually, it'll all be behind you.

    Best,
    John

  • MrsBD
    MrsBD Member Posts: 617 Member
    #7
    Eating

    It sounds like you are really doing well compared to some others on this site. At this stage of the game, I was drinking Ensure, soup, and anything 'smooshie' mostly because of mouth sores, not lack of taste. I did, and still do, prefer vegetables and savory food. You might try punching up the flavor with herbs such as garlic, oregano, and sage, but be careful with salt and spices like ginger, pepper, and cinnamon as they can irritate sore tissues. Some people like cold smoothies, shakes, and ice cream. I prefer food served at warm temperatures because cold makes my throat ache. This just goes to show how uniquely we are made. The best advice? Try everything until you find what works; then try again later if it doesn't. Remember to get plenty of water to help thin the saliva too. Bon apetit!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    eating at the H&N

    mokus,

    I did not eat normally for 7 months.  For me the awful taste and terrible feel were encountered with most meals and most foods, but I was constantly trying things all the time.  As crazy as my taste buds were I had good luck with Crystal light sweet tea and sweet corn on the cob and that was immediately after treatment ended. I also love tomatoes and olive oil with salt and pepper, there’s a lot of calories in olive oil and I really loved it. 

    I generally survived on protein drink and smoothies with samples of everything I could think of thrown in between.  I had dinner every weekend at my parents’ house on Sundays where I would eat one spoonful of potatoes, a bit of chicken and a few peas .

    I tried everything on the head and neck menu, but found my own path quite fulfilling and quite happy.  Most of my favorites are back in the food Lineup with one exception, clam chowder, I’m still working on that one.

    Give Mr. obsesses-alot the day off and invite Mr. try anything over for dinner.

    Matt

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #9
    phrannie51 said:

    First of all...HOORAY!!! You're

    in the single digit countdown on rads!! WTG, Mokus! 

    I'm sorry to say, food doesn't have a taste at this juncture of treatment....my food tasted a lot like sheet rock....eating became a duty....something to keep me alive until treatment was over, and I could begin to heal.  I drank Boost VHC (very high calorie), pretty much exclusively....pop the top of a carton for 540 calories in 12 swallows....duty done Smile.  I did eat some scrambled eggs here and there, and my sister made me cheese and cauliflower soup....I could taste cauliflower for some reason.  What I did learn tho, was vegitables had more taste than anything else...peas, beans, cauliflower....nothing that is sweet had any taste at all (and basically, still doesn't at 3 years out) .

    p

    I completed week 3 of rads

    I completed week 3 of rads today. The only taste I have remaining is bitter. Yes, even a Coke tastes bitter. But, Boost VHC still has the same taste. Like P, I drink 3-4 per day to maintain weight. Not the most pleasing drink but it's working for now. Good luck.

  • donfoo
    donfoo Member Posts: 1,773 Member
    #10
    u different

    Wow. You are doing amazing. Yes different, like far better than most. Just keep doing what you are doing as it is hard to expect a smoother ride. Hang in there, don't be doing anything to upset the balance of whatever you got going cause it is working swell!

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #11
    sweet versus savoury

    im opposite to most. I can taste all flavours of sweet. I do try savoury soft foods but don't like the texture or taste. I have to have sweet. I make my b'fast/coffee first thing...two neutral formulas two heaped spoonfuls of coffee likewise sugar. First thing in the morning it's heaven to me. I drink from a beer pint mug and top up th coffee formula with hot water. Mid morning I have a pint pot of warm sweet water...can't drink cold anymore. Can't bear the taste of water it's like rust or blood. Our water is hard. I can tolerate most soup can't say I enjoy it. I can cope with minced stuff but would rather drink smoothies or sweet tea and coffee. I've become a sweet junkie. I can manage one weak brandy Coke when socialising it taste worse than my medicine but has a nice effect of relaxing me and being giggly..just one..in the past it would take half the evening to get that effect. Strong black coffee gives me a lift as well. I think I taste most things now but my likes have changed. I have saliva but not as much as I used to its thicker and slimier now. My mouth stays moist while shut but if I talk or breathe through my mouth my tongue sticks to my teeth and roof of my mouth. All this may sound like hardship but it's not it's my new norm and I get on with it hardly noticing anymore. After a long while you forget what it used to be like. ...

  • mokus
    mokus Member Posts: 63 Member
    #12
    donfoo said:

    u different

    Wow. You are doing amazing. Yes different, like far better than most. Just keep doing what you are doing as it is hard to expect a smoother ride. Hang in there, don't be doing anything to upset the balance of whatever you got going cause it is working swell!

    jjj

    I have been lucky with most of it but here at th end my tongue has developed some sores at the back that make it hard to swallow anything with texture.  I got so sick of the smell of Jevity from spilling on myself so many times tube feeding that I gag at the thought of putting any type of drink like it down my throat.  And now I have started getting all of these sores on my neck  and back make me look like I got the pox.  This week the taste that I had is coming and going, nothing consistent.so I feel like I am relapsing.

    Also I am having some painful itching type sensation in my throat that was not there prediagnosis.  I was almost asymptomatic prediagnosis so It is scaring me a little to start having this kind of pain now at the end of treatment.  Makes me feel like they not getting everything.

  • mokus
    mokus Member Posts: 63 Member
    #13
    jackflash22 said:

    sweet versus savoury

    im opposite to most. I can taste all flavours of sweet. I do try savoury soft foods but don't like the texture or taste. I have to have sweet. I make my b'fast/coffee first thing...two neutral formulas two heaped spoonfuls of coffee likewise sugar. First thing in the morning it's heaven to me. I drink from a beer pint mug and top up th coffee formula with hot water. Mid morning I have a pint pot of warm sweet water...can't drink cold anymore. Can't bear the taste of water it's like rust or blood. Our water is hard. I can tolerate most soup can't say I enjoy it. I can cope with minced stuff but would rather drink smoothies or sweet tea and coffee. I've become a sweet junkie. I can manage one weak brandy Coke when socialising it taste worse than my medicine but has a nice effect of relaxing me and being giggly..just one..in the past it would take half the evening to get that effect. Strong black coffee gives me a lift as well. I think I taste most things now but my likes have changed. I have saliva but not as much as I used to its thicker and slimier now. My mouth stays moist while shut but if I talk or breathe through my mouth my tongue sticks to my teeth and roof of my mouth. All this may sound like hardship but it's not it's my new norm and I get on with it hardly noticing anymore. After a long while you forget what it used to be like. ...

    llll

    i am dealing with the sticky slime now, all day and night long.  I try to get it out spitting and coughing I bring up little chunks of crap.  I am trying to stay away from the foods I love for now, so I dont make myself start hating them because they are nasty during treatmentI dumped a bunch of brown sugar in some oatmeal today and did notice that I could sense its presence better than when I use honey.  All of the things they tell us to rinse with, including the salt and baking soda cocktails, just make me gag.  I can swish them in my throat but gargling makes me feel like I am going to vomit.  I have the GERD and am thinking is contributed to causing the cancer, as I am not a smoker, so I am afraid all this gagging is going to bring up more acid.

  • MrsBD
    MrsBD Member Posts: 617 Member
    #14
    mokus said:

    llll

    i am dealing with the sticky slime now, all day and night long.  I try to get it out spitting and coughing I bring up little chunks of crap.  I am trying to stay away from the foods I love for now, so I dont make myself start hating them because they are nasty during treatmentI dumped a bunch of brown sugar in some oatmeal today and did notice that I could sense its presence better than when I use honey.  All of the things they tell us to rinse with, including the salt and baking soda cocktails, just make me gag.  I can swish them in my throat but gargling makes me feel like I am going to vomit.  I have the GERD and am thinking is contributed to causing the cancer, as I am not a smoker, so I am afraid all this gagging is going to bring up more acid.

    Eating

    That sticky slimy mucus stage was awful. I did a lot of choking and gagging until my doctor recommended Mucinex at night. (Generic is fine.) Drinking plenty of water also helps thin the mucus. Radiation causes damage to the tissues in the throat and the mucus is designed to help us heal. This stage may last a few weeks. Hang in there.

  • Barbaraek
    Barbaraek Member Posts: 626
    #15
    MrsBD said:

    Eating

    That sticky slimy mucus stage was awful. I did a lot of choking and gagging until my doctor recommended Mucinex at night. (Generic is fine.) Drinking plenty of water also helps thin the mucus. Radiation causes damage to the tissues in the throat and the mucus is designed to help us heal. This stage may last a few weeks. Hang in there.

    Heavy mucus

    We are 4 weeks past the one adjuvant chemo that we tried (Cisplatin and 5FU) and 9 weeks out from the last radiation and still have that mucus that builds up. I feel like it's never going to end. Moreover it builds up in his esophagus overnight and makes him vomit in the mornings. We too have added Mucinex and have a humidifier going all night. It just seems to be lasting forever.

    Barbara

  • Grandmax4
    Grandmax4 Member Posts: 723
    #16
    Mucus

    The very mention of this word, brings back the memory of my struggle with it. It, to me, was the worse part of my recovery~~but, it does ease and you get back to your now, abi-normal, self.

    Some of the foods I found heavenly were...fried egg yolks ( I couln't do the whites, they got stuck, ) tomato soup made with water, and ritz crackers crushed in it, scandishakes ( available through Amazon) and that was pretty much it, besides my boost, and ensure.

    My epiglottis was removed so learning to swallow a new way was mandatory..it's now become second nature and at 4 years out, declared cured by my team of Drs, I can eat anything, except lettuce~~it still gets stuck.

    Best of luck to you, sounds like you are doing exceptionally well, and once you're past the mucus (UGH) hurdle, it's down hill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #17
    mokus, i'm sure the others

    mokus, i'm sure the others will be able to help you.  its been too long for me so i don't remember.  i just want to say i wish you the best and try to be pateint.  you are doing great to even be able to swallow.  i pray you continue to do that well.  check out the superthread.  i think you will find receipes in that.  carry on, warrior, you're almost to the finish line!!!

    God bless you,

    dj

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