Major worries about my taste returning to normal

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waterside93560
waterside93560 Member Posts: 4
in Head and Neck Cancer #1
I'm 4 weeks post treatment from SCC right tonsil cancer with two right neck lymph nodes affected. I've had 35 rad treatments and 2 high dose cisplatin chemo treatments. None of my surgeries were to actually remove the cancer, so it’s being treated completely by the rad and chemo. 3 DEC is my next visit for results of this treatment. I'm pretty upbeat about the prognosis, but I am extremely worried about not being able to eat. I'm living off of Ensure through my PEG tube. I think I'm healed enough to physically start to eat through my mouth, but mentally, I can't get over the foul taste and texture of food. Has anyone else opted for the tube vice eating for this long and how did you overcome the mental part of eating again. Is it still too soon and I'm being impatient. I've read other member’s timelines for recovery and don't know if I can last the months that they describe.

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  • KTeacher
    KTeacher Member Posts: 1,103
    #2
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    You will do it

    I didn't have a peg, can only tell you taste will come back-slowly.  4weeks is still on the early side.  Have you kept up your swallow?  There are many here that were on their peg for quite some time before beginning to eat.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
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    No worries

    Your taste will recover in its own time, and some things will begin to taste better, but some things not.  It will amaze you what order things straighten out again, and I won't predict because none of us are ever the same.  The fact you can taste at all is promising.  I had radiation twice.  the first time, I remember vanilla tasting good before anything else.  vanilla cookies and milk started putting weight back on me.  The second time I didn't lose my sense of taste, don't ask me why.  Now ensure, of course, you can live forever on it.  since my second rads I've got a bad case of radiation fibrosis, so solid foods are out.  Everything is either completely blenderized, or its ensure for me.

    I don't mind this, as it is the trade-off I made to survive the cancer.  Keep the faith, recovery takes a long long time, and this taste thing, well, I remember finally saying to myself things tasted normal again, about four years after treatment.

     

    Best to you.

     

    Pat

     

  • yensid683
    yensid683 Member Posts: 349
    #4
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    I did too

    I too worried about ever enjoying food again.  I was stage IVa, base of tongue with left cervical lymph nodes.  one round of induction chemo and then 33 rads with weekly erbitux.  I finished rads July 5th of last year and didn't really start eating solid food for a good 6+ weeks.  Even then it was a real challenge to try to eat regular food.  It was later in September before I could actually eat real food and taste it.  Believe it or not my first real food was the dollar Burger King cheeseburger.  I figured that if I wasn't able to eat it I'd only be out a buck.

    Here it is, some 15 months later and I can eat just about anything.  Taste recovered well, saliva continues to slowly improve, probably around 75% at this point.

    the point of this ramble is that it will get better, you will regain a sense of taste and you will enjoy food again.  It just takes time is all.

    Peter

     

    PS, I had a PEG tube, once I was on real food and gaining weight I had it removed (mid October) and never looked back!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
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    Welcome...

    Now for the tough love..... I didn't have the PEG, but at four weeks out, I was pretty much where you are... Ensure Plus and water, with plenty of meds to help curve any pain.

    Four weeks..., you ain't even close to getting much taste back, let alone anything tasting good.... Now you are getting close enough to probably start taking food in by mouth... But it's not for pleasure, it's solely for calorie intake and to get that throat working again.

    Give it another month or so and you probably will start having some taste, ummmm just starting to return.

    It took me nearly two years to get 100% taste back, but at six months I could taste more than enough to survive and enjoy what I could taste enough to last me if that's all the better it got.

    Saliva is more on the time frame of six months to a year to get nearly all back for me...

    Hang in there, it'll get better..., just in verrrrrry small increments.

    Best,

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    You're still in the baby stages...

    someone else mentioned it, but I'm going to mention it too.....be sure and swallow something everyday, water, tea....something to keep that swallower going.  Food takes a while to start tasting like something.....and everybody is different.  I was eating soup by four weeks out, tho I could only barely taste the first bite, and then it was tasteless.  I've always thought wouldn't it be fun if taste came back as quickly as it left?  What a rush!!  But it doesn't.

    I didn't get my PEG out for 3 months after treatments ended.....tho I quit using it about a month out.  Start trying different things tho now.....my experience was that the blander stuff had more taste.....like milk I could actually taste....but nothing else.  I'm a year out now and I can taste salty stuff, like chips (don't the spit to do many)....but I can't taste anything sweet for more than 2 bites.  Experimentation  was fun.....Oh....another thing many of us did for a taste try.....Oriental Buffet!  Oriental food seems to have a taste when nothing else works.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
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    new normal, no old normal

    Waterside93560,

    Welcome to the H&N forum, where eating your food is optional.

    I had a PEG, but had it pulled at 1 week post as I could drink my meals.  While I continually was sampling foods, I could not stand the feel of 99% of all foods.  It never made sense to me when the rad onc said “you could lose your taste buds”, boy all of us here know what it means now.

    Granted, I was a little disappointed by the no taste, terrible feel of foods, but I made friends with smoothies and was happy to be rid of the cancer,  I had a little Igloo cooler I use to tote all around filled with water and protein drinks.   My wife would have a hamburger and I would have a smoothie, no big deal.

    Then one day, 7 months post I was confronted with having to eat real food for a lunch (away from home).  I took a deep breath and ordered a Turkey sandwich.  Well, it was like a switch got flipped and I was back to eating again. Today, at 19 months post, my taste buds are fair to good, I eat anything I want and I drink lots of water with every meal (and the water thing is improving too).

    There is hope,

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
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    phrannie51 said:

    You're still in the baby stages...

    someone else mentioned it, but I'm going to mention it too.....be sure and swallow something everyday, water, tea....something to keep that swallower going.  Food takes a while to start tasting like something.....and everybody is different.  I was eating soup by four weeks out, tho I could only barely taste the first bite, and then it was tasteless.  I've always thought wouldn't it be fun if taste came back as quickly as it left?  What a rush!!  But it doesn't.

    I didn't get my PEG out for 3 months after treatments ended.....tho I quit using it about a month out.  Start trying different things tho now.....my experience was that the blander stuff had more taste.....like milk I could actually taste....but nothing else.  I'm a year out now and I can taste salty stuff, like chips (don't the spit to do many)....but I can't taste anything sweet for more than 2 bites.  Experimentation  was fun.....Oh....another thing many of us did for a taste try.....Oriental Buffet!  Oriental food seems to have a taste when nothing else works.

    p

    Sweets....

    Hang in there P, sweet was the very last thing to return for me...

    Like you, one or two bites and I'd lose the taste... But eventually it all came back...

    JG

  • dunedintech
    dunedintech Member Posts: 90
    #9
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    Varies

    I did not go the PEG either but I recall 4 weeks out things not tasting great. Around week 8  the taste slowly returned. The main thing is that it does come back as others have mentioned. I am now coming up 7 months post treatment (30 rads, 3 x cisplatins, operation) and all has returned bar sweet. It will get better, albiet slowly.

    Looking forward to hearing about the return of the buds!

  • lornal
    lornal Member Posts: 428
    #10
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    6-8 weeks

    It took 6-8 weeks for my taste buds to come back.  I didn't have a PEG, and wasn't eating anything.  Unfortunately, didn't drink enough either.  I did find one sports drink that had potassium in it so I wouldn't need it in the fluids I got at the hospital several times a week.

    When my taste buds came back - they did so overnight.  When I woke up and tasted the sports drink - I'm sure I spit it out.  It tasted nasty.  (In my normal life, I never would have drank it - it was that bad!)

    Spicy things were out for me - that included ketchup for some reason.

    You'll get there, and will appreicate eating again!

  • Lisams
    Lisams Member Posts: 4
    #11
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    You can and will survive the

    You can and will survive the time it takes to heal!! Stay away from the disappointment. i ate only what tasted good and stopped "trying foods" so frequently. It really helped. I got to a point that the foods that worked became my comfort foods and slowly I stopped dwelling on what I couldn't have.   My treatment stopped May 1st. I am at about 80% regarding my taste buds. I still find myself sticking with the old foods that didn't taste nasty..... Haha.  

    Good luck and stay positive :) 

    Lisa

     

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #12
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    Yep......your normal

    4 weeks out is early which means you have many things to look forward too, taste being one of them. As many said give it time and you will soon enjoy your new normal. I look at it like my new postpersonality. Most here will never be able to enter a food eating contest but certainly enjoy all we gained back.

          Jeff

  • Ron Silver
    Ron Silver Member Posts: 94
    #13
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    Figure another 4 to 6 weeks

    Figure another 4 to 6 weeks of the peg.  However, you may not still feel like eating.  But you should be healed enough to force yourself and have the peg pullled.  Make an appointment with your doctor for 6 weeks from now and tell yourself the peg gets pulled that day.  One week before force yourself to eat/drink everything by mouth.  It will suck.  But after the peg is pulled week by week it gets better. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
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    Duggie88 said:

    Yep......your normal

    4 weeks out is early which means you have many things to look forward too, taste being one of them. As many said give it time and you will soon enjoy your new normal. I look at it like my new postpersonality. Most here will never be able to enter a food eating contest but certainly enjoy all we gained back.

          Jeff

    No Food Eating Contest...

    Speak for yourself big guy.... Cool

    JG

  • waterside93560
    waterside93560 Member Posts: 4
    #15
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    Thanks for the encouragment!

    Thanks everyone. It is nice to know things will get better.  I was dying for a cold frosty Coors Light beer so I tied to drink one last night.  I got a few swallows down, tasted like crap, but it gave me hope that i can overcome the mental aspect only using the tube. I'll move on to soups soon, but I'm going to keep the tube for a few more months.  I'll keep everone up to date on my eating progress as this is the one aspect of life that I can not imagine living without.

  • donfoo
    donfoo Member Posts: 1,771 Member
    #16
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    grind your food

    Hey,

    For 10 bucks you can pick up a  baby food grinder and start mashing up soft foods. The texture is good for starting to swallow solid again. You can always dilute what you mash up in some liquid like milk or water to get going. I had no PEG and got by on protein shakes and ground up food. You will make it. Oh, ditch the Ensure (sugar water sprinked with vitamins and mineral) don

  • NelsonOng
    NelsonOng Member Posts: 47
    #17
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    Keep on trying food

    Don't give up and keep on trying various food. I do not hv a peg tube n post 6 mth treatment. My taste buds all came back in 5 weeks being sweet the last. Food really taste bad and anything goes into my mouth Taste saltidh. i was very angry then but I did not give up. I kept trying trying trying various food.  Try drinking root beer as it works for me of getting some taste at that moment. Your taste will comes back and remember... Everyone here is different. GBU.

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