Taste Buds

Joanielo

I recently completed 35 radiation treatments plus 3 chemo treatments for tonsil cancer. 

I am wondering if some of you could tell me how long it took for your taste buds to return and how long before your appetite returned? 

I am off the feeding tube but only drinking Boost as taste buds and appetite seem to be gone.  I think that my appetite might come back once I can taste things.

Thank you

CivilMatt

eating normal, tasting barely

Hi Joan,

 

For 7 months post I lived mainly on smoothies.  I did not have taste and at the same time could not stand the taste and I hated the texture and feel of virtually all foods.  Now, texture is a non-issue and the taste buds are relearning to taste.  I eat most anything I want with caution (small bites and plenty to drink).  Today I was using up the protein mix by having a smoothie and choked on some hazel nuts I ground up.  Choked so badly I sneezed nuts out of my nose and then got into a 5 minute sneezing fit with my body trying to dislodge the nuts.  I really try to be careful, but I got a little free-spirited and suffered the consequences.

 

At this rate I appear to be on the 3.62-year plan, only time will tell.

 

Good eating, good luck!

 

Matt

blackswampboy

months

you're gonna get a lot of different answers on this, there is no normal.

for me...at six months out from rads, I can taste pretty much everything. even chocolate. but...I was trying to explain this to the family last night...it's kinda like drinking light beer when you used to drink Fat Head's Headhunter IPA. the basic components are mostly there, but weak sauce. maybe about 75% of full flavor. but hey, no complaints.

appetite started coming back a few weeks ago, and that was huge. and weird. figure I hadn't really been hungry for 7-8 months, since before diagnosis.

hope you don't have to wait that long!

corleone

I finished the radiation on

I finished the radiation on Sep. 5^th, 2012 and last round of adjuvant chemo on Nov. 26^th.

The taste buds for salt started to come back (very) gradually 1 month post radiation; the one for sweet 2 months post radiation; that for bitter 3 months after, and the one for sour is welcomed but hasn’t showed up yet.

I haven’t had surgeries, and that must have helped. I can eat now almost any “normal” food, meaning solid foods are not a problem as long as I help with water or tea (saliva is only 10% back). I rarely have pain at one particular location at the back of my throat when I swallow solid foods (it’s on the same side where I had the biggest lymph node, must have received a hefty dose of radiation), but it is not constant and doesn’t seem to be related to any particular food.  The taste is particularly good at the first bites, and then is goes south. I don’t enjoy eating as much as before radiation, but it’s not a bad experience either.

Skiffin16

For Me...
I didn't have the PEG, also survived off of mainly Ensure Plus about mid way through rads until about a month post rads.

I completely lost all taste an saliva during that time. After rads it took several weeks before I started getting much any taste back and even longer for any signs of salivary function. A bottle of water with me pretty much 24/7.

Like most here, within 3 - 6 months I did have enough taste to survive and live comfortably. But it was nowhere close to before. I regained maybe 75% or so back within the first year, but it took nearly two years or so to completley get back all 100% of my taste.

Saliva was a little slower coming back, but tracked pretty close to the taste... I have around 95% saliva back, just trying out a little at night still.

I'm not sure if I really ever lost hunger, I just didn't think about it much as there wasn't much point when I was still on Ensure, and it was slow to eat between some residual pain and lack of saliva.

So...to your question...though each of us are different, around 3 - 4 months most start getting some taste and saliva back...others slower, a few sooner.

Hang in there,
John

phrannie51

I'm 5 1/2 months out of radiation...

and 4 months out of the last chemo.  My taste buds are good for the first few bites, and then it's back to blah.  My appetite was huge when I finished the last chemo in August, but I couldn't even attempt to eat until the end of September.  I was so hungry, I'd stay up into the wee hours of the morning watching the Food Channel....reading cookbooks, and day dreaming of various foods that I was going to try immediately after my mouth healed...LOL.  My appetite now is so so, but that has more to do with the lack of taste than not being hungry.  Since food loses it's flavor after a few bites, the last of the plate gets ate, but there are no seconds.  I've only managed to gain back 7 lbs or so in the last few months. 

I just keep listening to John (Skiffin).....he said it took 2 years for everything to come back to almost normal....so I'm putting my sites out there.

p

ac_scott

Lucky

I'm 10 days post 35 Rads, no Chemo yet.  I had real problems eating during TX, lsot 50lbs, nedded to lose about 35.  Everything really tasted and felt like crap.  5 Days ago the last of the mouth sores healed up, and I'm eating everything in sight.My tongue was hit pretty hard as that was the location of the primary.  Although I really don't have taste back, food doesn't feel bad anymore and it goes down easy, I can taste a little butter, spicy, potatoes.  Saliva production is still off but bearable.  It affects everyone different, I managed to be one of the lucky ones.  Chemo is still on the table, maybe that was the differance.

Skiffin16

ac_scott said:

Lucky

I'm 10 days post 35 Rads, no Chemo yet.  I had real problems eating during TX, lsot 50lbs, nedded to lose about 35.  Everything really tasted and felt like crap.  5 Days ago the last of the mouth sores healed up, and I'm eating everything in sight.My tongue was hit pretty hard as that was the location of the primary.  Although I really don't have taste back, food doesn't feel bad anymore and it goes down easy, I can taste a little butter, spicy, potatoes.  Saliva production is still off but bearable.  It affects everyone different, I managed to be one of the lucky ones.  Chemo is still on the table, maybe that was the differance.

Nope...

Chemo is only temporary....

It's the rads that kills the taste and saliva for so long....

You sound pretty lucky from what you say... The true test will be on how long it takes to come back.

Like many, it starts back relatively quickly, if you call 3 - 4 months quickly. But that's just a start, the progess is very slow..., hardly noticeable even on a weekly or monthly time frame.

JG

Laralyn

It definitely varies for everyone

...but I'm with Phrannie in setting my expectations at a couple years. I finished radiation and chemo on June 1, 2012. My taste is still spotty--I never know unti I eat something whether or not I will be able to taste it, or for how long I'll taste it. Sometimes I taste it well and it lasts the whole meal. Other times, I can't taste much of it and about 3 bites in, it feels like I'm eating wallpaper paste. It's definitely getting better, though. There are more things I can taste, overall, and more things that I can taste further into the meal.

My saliva is getting a little better too. I didn't even realize until after I'd done it that I ate a whole side salad without pausing to drink water. That just happened a week ago, and until then I honestly had thought my saliva was still pretty much missing. It just goes to show that sometimes the healing can be so gradual that we're not even aware of it until something unexpected brings it to our attention!

On a side (and kind of icky) note, I don't know if it's my ongoing dance with thrush or a normal side effect of lower saliva and radiation, but I find brushing my tongue 2-3 times a day makes a big difference. If I don't brush my tongue, I start to get this sour taste in my mouth, and I can't taste anything else when I eat. I seem to have a thin white coating of something on my tongue all the time unless I brush it off. Try brushing your tongue really well about 15 minutes before you eat, and see if it helps with both the taste of the meal, and maybe even your saliva.

jtl

Going from memory

Which at my age is dangerous.  There is some correlation between saliva production and taste which as we know are both affected by RT.  Taste almost always returns to an acceptable level even if not 100%, saliva can return but it can be a more difficult issue.  How and where the radiation was delivered can make a big difference in the outcome.  Some of us, due to the location of the tumor, were given saliva gland sparing RT.  I am 14 mos post treatment and my saliva is virtually 100% but I never really had any Xerostomia or Mucostitis  My taste is acceptable albeit not at pre-treatment levels.  I am very thankful for everything I have at this point.

One other thing that I urge all of you to not forget because it is easy to overlook.  We need to be very diligent about oral hygiene.  Because of the fact that our saliva glands have been compromised (even those of us who apprear to produce sufficient amounts) the PH of your mouth has most likely changed from neutral to acidic.  This affects the "good" bacteria and can lead to caries.  As you probably know having teeth extracted after radiation to the jaw is not a walk in the park.  One of my best friends just had a mandibulectomy and I can tell you it is not something you want to go through.  It is very easy to take care of your teeth, get regular check ups and consider using a prescription strength fluoride toothpaste as either a replacement for your regular toothpaste or as a supplement.

Best wishes to all of you for 2013!

John