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Im desperate for your input

Isign4Him
Posts: 35
Joined: Jul 2012

Hi all, just finished round three of chemo and my biggest battle has been taste. Ever taste terrible, have to eat things that slide down to avoid chewing and the nasty taste. I would like to know your experiences as far as taste returning to normal. Does it get worse with the rads and if so do return to normal after TX and how long before there is some sense of normal taste? I Need your input!

In Christ Kevin

yensid683
Posts: 242
Joined: Apr 2012

But it will take time.

I had induction chemo, but only one round as the cisplatin caused renal failure and after the 5FU had finished, the inside of my mouth felt raw, tastes were magnified. Even trying to drink water out of the tap was a trial, it seemed like I could taste both rust and mud!

With the renal issue, they discontinued induction and moved over to rads and erbitux, and my sense of taste went down after about 2 weeks of treatments. I couldn't tolerate anything but bottled water and thank god that my RO had a PEG tube inserted, I was able to get the necessary nutrition and avoid taste and swallowing issues.

It took about 5 or so weeks after rads for my taste buds to wake up. I was using a salt water and baking soda rinse for my mouth and teeth, and one day I discovered that I could taste the salt in the water. Exploring tastes over the next week or so I found that sweet had returned, bitter and sour as well. Sour was and continues to be pretty intense as the loss of saliva production intensifies the effect of sour.

I know it seems hard now, it will likely get more difficult until it begins to get better but it will. It will just take some time to get there.

I'm 90 days post treatment today, I'm off the feeding tube (it is still in though), eating solid food (burgers work very well) drinking and while it is a pain in the *** to sip water with each bite of food, I'm learning the balance and it is getting better. Glacially slow but none the less, it is getting better.

You will too, all of us respond differently, but you will get there too.

Peter

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

using liquid supplements is ok at any time. Even if they taste bad, they go down fast. Lots of calories in a hurry.

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

As mentioned drink supplements, Im just shy of 9 months out from last treatment , most of my taste is coming back, except for red meats, they still taste funny. I couldn't eat anything out of a can or use silverware for a long time, too tiny in my mouth. I also added scoops of whey protein mix to anything I dranks such as milk shakes to give me added proteins that I wasn't getting from foods.

Linda

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Longtermsurvivor used to tell about how many swallows it took to get them down during different stages of his treatment. These two things are the only things I ate between July 3 and Sept 13th...I counted the swallows, to get them down as fast as I could so I didn't have to taste them or contemplate the texture. I knew I had to feed myself, and that became the only goal.

If what you're eating tastes bad now, then rads simply will replace bad with nothing...which I imagine might be a relief. No taste at all is the name of the game with radiation.

p

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

didnt I? That was also back when Amlot of what I tried to swallow came pouring back out of my nose. Dang I was a mess back then:)

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Yes you were a mess - as all of us have been during this voyage.

:>)

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

keep this thought while you eat, even though it tastes bad now, it has to be good as you used to like it and ate it. so keep eating.

it will get better, after treatments.

it will be slow to get better but it will

john

hrowe
Posts: 51
Joined: Oct 2012

I had 35 rad/6 cisplatin treatments for SCC tumor at the epoglottis. I lost all taste at rad treatment 10. Had bad metallic taste like everyone gets. Salt/Savory tastes started coming back about 3 weeks post treatment. Sweets about 6 weeks. I'm now 3 months post and sweets are at 50% strength. They use to fade to nothing after one bite. Now the sweetness hangs out a lot longer. Pop tastes pretty bad. Red meat tastes fine. Veggies taste fine. Tea tastes ok. I'm about 60% there. Rad onc said 6 months to a year. Still have a dry mouth but I definitely have more saliva that a month ago. Biotene gum really helps with the dryness!

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Somethings that worked early on for several of us were milk, eggs, baked potato with butter & sour cream and pancakes with plenty of syrup. Personally one of my consistent picks is crab legs and melted butter. Keep trying, what didn't work one day may work on another day.

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

As you know, each individual is different...I am 8 months out from my last rad and I believe I have 90% of my taste back..still can't eat spicy foods and some fruit (bananas really burn still) ...but oh how I can taste compared to 4th week in treatment (which was December 2011) till June 2012 :)

Hang in there my friend ..it will get better...but get your protein so you can heal faster....stay hydrated too!!!

I had two tastes back then...cardboard and cardboared with butter :) :)

Tim

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Smoothies are what I used for a while to get in high calories quickly with little sugar (I was avoiding sugar for a while). A combination of pain and loss/change of taste made me not interested in eating, so went for what would go down easily and quickly. After rads ended, taste came back pretty quickly for me.

I do remember, however, feeling sad some days as I was "losing" different foods. Even though people assured me the taste would return, it made me sad at times to either not be able to taste an old favorite, or to have the taste distorted. On morbid days, I'd think "Now ___________ (fill in the blank with whatever I couldn't taste/eat that day) is gone for me - will I ever be able to have it again?"

I don't recall exactly when taste returned. I know that two months after treatment, I could taste many things. It took a while for cold, sweet things (cereal, ice cream) and some chocolates to come back, but I was so pleased with the rest, I didn't sweat the small stuff (usually).

CivilMatt's picture
CivilMatt
Posts: 3089
Joined: May 2012

Hey Kevin,

You ask when to expect “normal taste”. At 28 weeks post (Friday) I am not even close to normal taste, but bacon got added to the eat list this week, yum. Many things are eatable today that one month ago I would politely SPIT OUT. Sweet tea with artificial sweetener is great, I would give I it an 8. My spit is less glue and my rad onc said that’s a good sign. I love my smoothies, but continue to step outside every chance I get. Last night my wife and I roasted marshmallows, I’d give that a 6. Mind you this was a perfectly roasted marshmallow (4 of them to be exact). Now if the hotdogs would just taste right.

Best,

Matt

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Kevin

Even if it tastes like the north end of a south bound mule EAT IT. The options are terrible. I'm 16+ years out from treatment and while food didn't taste "bad" it never was like I remembered pre-treatment. Now I'm on a tube and wish I could taste some crappy food.

Hang in there

Denny

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

consider this my like button for "tastes like the north end of a south bound mule EAT IT"

i would add even on a 95 plus degree day

wish you could eat/taste

john

wild willy's picture
wild willy
Posts: 33
Joined: Jun 2012

i,m 2 yrs 7 mon. out and still no taste. hope you have better luck. wild willy

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