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How long to get back taste and saliva?

Just George's picture
Just George
Posts: 8
Joined: Jul 2012

Greetings all. It's been a while for me on the board. Sure glad to see almost everyone is doing so well.

I have a question about the amount of time it takes to get back at least some taste and some saliva after treatmente ends. I am at 3 weeks and 2 days after radiation and 3 weeks after chemo. I had 33 rad treatments and 3 chemo treatments.

Still have the 'tube' and sure enjoyed to thread about removal on th 9th.

Thanks for helpin' out.

Just George

phrannie51's picture
phrannie51
Posts: 3726
Joined: Mar 2012

but I still get taste fatigue...the first few bites are great, then it's back to tasteless...not that it's stopped me from eating, however :). The saliva, I don't know...I'm still washing things down with water....tho it must be getting better because I only have to wash every three bites and not every single one.

My last rad was June 16th....my last chemo was Aug. 28th...I'm hoping for near normal saliva by next June.

p

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

Just George,

I was in the “no taste” “awful feel” (with lack of saliva) club for approximately 6 months and 2 weeks before a dramatic change occurred. All of a sudden, food started to feel normal, not a lot of taste yet, but I no longer hate the feel and no longer have to spit it out immediately. I went out to breakfast yesterday and the bacon was almost normal. Bacon, bacon, bacon.

When my rad onc looked me in the eyes and said there was a chance my taste buds might never come back, that thought keep going through my mind. I don’t know how far I will progress, but at 38 weeks and 4 days I feel very fortunate.

I put the blender away and the protein powder in the cupboard. I drank smoothies for 219 days and can not believe how fast things are changing. It truly is like a switch got flipped in my head.

Good luck and good eats!

Matt

Mind you it is not like pre-cancer days, but a heck of a lot better than “I hate everything about food”

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Sorry I can't help as David has just started radiation. I sure hope your taste comes back quickly.

waynepnyg
Posts: 1
Joined: Nov 2012

I have had 13 radiation treatments and 3 chemo treatments and my taste is pretty much gone, about the only thig I can taste is vanilla. I ask my doctor about it yesterday and he said that it was earlier into the treatments to be losing taste. When asked about taste returning he replied that it may never or be atlered. Really didn't want to here that.

AJW1966
Posts: 69
Joined: Nov 2012

I'm currently at rad #15 with 15 more to go. Not much taste left or saliva. I would love to know your experiences with this over the next weeks/months to come.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

we're all different...but I'd be thinking in terms of months, not weeks. and some things will taste more/better than others.

I'm 4+ months out from tx.
could always taste salt.
can taste some sweet, like in xylimelts.
can taste the benadryl/maalox in my magic mouthwash. oh yum. ;-)

most food still tastes blecch and blah. last time I tried eggs, they were very blah.
recently tried a werther's hard candy--blah.
sometimes water still tastes blecch.

still waiting for that switch to flip! it'll be a nice surprise when it does.

Sam999
Posts: 305
Joined: Mar 2012

I am 4 months since my last rad and can taste most things. I still cannot eat anything spicy and have foods i dont like. Here is approx taste journey timings:

At about 3 weeks i could taste little bit of salt. So i had to put about 4 times the normal salt. Best way to find out salt is mix some water in salt and try to taste it.

Fruits and veggies started tasting good soon after that. You have keep trying different veggie and fruits. Some might burn, some might not taste good. Also try home made apple sauce, i used to like that.

Sweet took longest to come, about 3 months or so. I still cannot taste cold stuff like ice cream. I find that organic sugar taste better to me.

Lot of restaurant food still does not taste good. Most of home foods does. Key is to not to give up, keep trying. Once salt taste comes back, you could try different pasta. Tomoto sauce used to burn at first so i tried pesto pasta etc.

Also there are some food that will have a lot stronger taste, e.g. I used to like ginger in my tea, now i find it very strong flavor.

We know how you feel, i have posted similar questions not too long ago. It is slow path, but before you know things will start getting better.

Sam

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Months, not weeks....

It started back a month or so post Tx, and only a little at a time. That might only be one bite with taste then gone.

Many things that just tasted terrible, I'd leave them for a month or so then try again.

It took nearly two years to completely get all of my taste back, and about 95% of the saliva.

Hang in there, it'll get better...

JG

phrannie51's picture
phrannie51
Posts: 3726
Joined: Mar 2012

my last treatment (chemo ended Aug. 28th) was go to a buffet...I went to an Oriental Buffet...I could switch foods before my taste got fatigued, and I learned what things tasted GOOD, and what things stung, and what had no appeal at all. Then I went back and filled my plate with the things that tasted good.

Last week was the harvest dinner at work...one of the girls fixed a plate for me to have that night....on the plate was turkey, mashed potatoes, yams, and salad. Everything but the salad slathered in gravey....I hopped and skipped from one thing to the other, and it was ALL delish (well, the turkey was hard to get down, but it still tasted good). Bait and switch is how you fool taste buds.

Matt...I tried bacon last Sunday...it was hard as hell to chew, but boy it DID taste good.

p

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I LOVE bacon. Tastes delicious. When I eat it, however, my tongue will be sore for days.

Deb

ditto1
Posts: 630
Joined: Mar 2012

as far as taste, other than sweets I was surprised that the foods tasted pretty good and close to what you expect around 2-3 weeks after my final RAD in August. I was also swallowing well, and I never had a Peg tube during tx. As for saliva, not sure where I stand on that, I believe its coming back but could not swear to it. I keep water close by always right now. Have noticed recently depending on what I eat I can get by with less water to get it down but not a lot less. So to wrap it up taste ok, saliva still waiting.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Depends on the individual Depends on the amount of radiation you got. Stage 4 here, mets to lymph nodes on both sides of my neck so everything got blasted. Maximum dosage.

I'm 2 1/2 years out from end of treatment and beginning to suspect that I will never have much in the way of saliva. Still waking up in the middle of the night with beef-jerky tongue, and getting through the day by carrying a water bottle with me where ever I go.

Can't do pepper. Can't much taste salt. Can't much taste sugar. Love Mexican food and hot sauces, and spicy Asian foods. Beers are wonderful. Wine mostly tastes like vinegar but some sweet reds are good, like Tempranillo. Hard liquor is out, as it burns painfully.

Can't do dry meats. Can't eat fluffy foods like cakes and white bread. All fruits and vegetables are delicious. Fish and seafoods are delicious. I enjoy dairy and eggs. Candy and desserts are completely unappealing.

Still gag sometimes. Still get stuff stuck in my throat, but I've never blocked my airway. All in all, I feel pretty normal, and enjoy eating just about everything, but I have unconsiously modified my eating habits to stay away from the stuff I can't really get down. You will achieve a new normal, and enjoy food again. Just not all foods.

Deb

yensid683
Posts: 227
Joined: Apr 2012

As so many of us have discovered, it is different for each of us. I was SCC BOT, HPV+, stage IVa, and it was about 5 weeks post rads that I discovered I could taste salt. Magic Mouthwash and Biotene rinse did not work for me, but salt water and baking soda did. For most of my treatments and for some time afterwards it had no taste, but one morning I could taste salt! I was overjoyed!
Taste started to come back quickly after that, sweet came back next and then sour and bitter. Sour and Bitter are extremely strong and a lot of foods are not easy to tolerate, apple sauce was especially hard to eat, but I keep trying, keep exposing my taste buds to more and more experiences. I don't get tired of tastes, and I can do more than I thought I would be able to, but it does come back if you work at it.

Now if my salivary glands would move beyond the SAE 600 weight gear oil stage....

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

for me i had the old style treatment 16 plus years ago, taste has not returned but smell has

good news is, with the new treatment machines over the last 3-4 years, i do not know anyone who did not get some kind of taste back. i do know how ever that the return time of taste is all over the board, i have a local friend who i call my poster survivor who could taste and eat at about approx. 3-4 weeks after 7 chemo's and 35 rad. treatments. then there are several that have taken 9-12 months. best news of all they all got something back, worst of all it just never came back fast enough

give it time, i am certain it will get better with time. right now time is free and you are blessed to have that time.

btw, welcome to this group.

john

Viilik70's picture
Viilik70
Posts: 58
Joined: May 2012

I been through radiation twice, so as much radiation as one human can take and my taste always came back, but the first time I went through radiation it took at least 3 months to come back but no longer than six. Keep your head up because they sad I'd never be able to swallow or eat food and my swallowing and eating has gotten a lot better and the doctor actually admitted it, but it was hard for him :) Praise God!

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