I know everyone is different, but I am just wondering what people's experiences were with IMRT radiation and taste buds. Specifically, if you had approximately 35 treatments to the tongue, how long did it take before things started tasting the way that they should?

Thanks,
Sarah

Great question and one that's not discussed nearly enough in my opinion.

My last of 33 IMRT's was 5/24/06 so I'm about 3 1/2 months out. With the exception of the last week or so, I've been on a liquid diet for nearly 5 months. No PEG, I've lost about 30 pounds since the ND in March. During that time eating has been out of the question; I've developed what I can only call a 'food phobia'. Everything tastes horrible and only some things are even tolerable. During the last week, I've gotten to the point where I can force myself to eat a few limited things, mostly chicken breast and french toast washed down with milk or water. A few bites of steak, some hardboiled egg and some avocado. That's about it.

However, I feel so much better (almost 'normal') after eating solid food, I'm encouraged to continue to force myself to eat at least twice a day, but it's a chore.

Frankly, I feel angry everytime I face the prospect of eating. There's a whole lot they DIDN'T tell me about this treatment, including the trismus, L'hermittes and especially the lack of sense of taste. Now, probably anger is not the correct response; I should feel gratitude that the treatment has so far been successful as my first PET/CTscan last week was 'clear' with no sign of cancer. But then again, no primary tumor was ever discovered in the first place.

So, the short answer, for me, is that 3 1/2 months out from radiation and taste is only slightly, almost imperceptibly, improved.

Hi Senator13,

Not sure if I am typical, but I am almost two years out. I have full taste and no dry mouth. It took 6 months to get full taste. It took 19 months to be able to tolerate salsa. It's a slow process, but have patience. Salivary glands and taste came back for me. You just have to keep trying.

Steve

HI AS YOU KNOW EVERYONE IS DIFFERENT. MY TASTE BUDS CAME BACK IN A YEAR. FIRST IT WAS THE SWEET,
SALTY,YOUR SOUR. IT WAS NICE WHEN THEY ALL CAME
BACK. I HAD TONGUE CANCER. HOPE THIS HELPS.
CATHY

I think most of my taste came back within a year (unfortunately my swallowing ability did not--still working on that). I still have some very easily irritated spots in my mouth, though, and can't tolerate stuff that's acidic or spicy. But it's not because I don't like the taste, it's just I get a burning sensation very easily with lots of stuff.

Nelie

Actually it has been discussed a lot - I got 20 hits just in this topic alone using the search engine. Not having any sense or distorted taste is one of the more miserable aspects of treatment.

I had IMRT and my taste buds started recovering about 2 months post Tx with a reasonably full recovery in about a year. Salty flavors came first with sweets last. I think that my taste buds are 100% now at almost 4 years post tx. I can eat anything now, including spicey hot.

Salivary function return was a gradual thing and took 1 1/2 years.

My experience has been a bit different. I had IMRT (X35) and cisplatin (X2) for tonsil cancer (SCC)(T2N2M0) nearly 3 years ago. I lost the ability to taste anything.

While salty, sour and bitter taste returned about 6 months after the end of treatment, and salivary function recovered to about 70% by 18 months, I still have to carry a water bottle and can only taste the first couple bites of sweet and it's not very sweet.

I'm not complaining at all -- I'm happy to be "cured" and have adjusted very well to my new normal taste buds. I lost 60 lbs (with a PEG) and resumed eating well enough to gain back 15 lbs.

Hope this helps. What it really shows is everyone's recovery is different.

I had cancer of the tongue when I was 24 and a final year medical student. It was treated by the insertion of radium needles for a week and I had little trouble afterwards apart from some temporary blockage of the submandibular gland. I had no loss of taste for 46 years but my taste began to go about 2 years ago and I everything now tastes unpleasant. Opinion is divided as to whether this is due to the radium needles inserted nearly half a century ago or whether there is some other cause as yet undiagnosed.
It seems a different story to most of those above; I had my problems when young but take comfort - I've lived a long time afterwards!

Ian,

WOW!! 46 years? I think that must be some kind of a record on this site. Have you had any other long-term effects? (I'm kind of surprised that taste problems would show up after all this time.)

Maybe you could go to the Survivor Stories section of the forum and tell us some more about your experience, even though it was long ago. It's great to hear more from long-term survivors.

(By the way, I also had radiation implants in my tongue, but only for about 30 hours -- after going through 7 weeks of conventional radiation therapy.)

Cathy

Ian, thank you for posting!!! awesome to hear you are a 46 year survivor! God Bless, Carol

Ian, your post was a great boost to alot of people-thanks. Amy

I am 5 years out and I can recall it took about six months for most tastes to return to normal. The salivary glands were suppressed by the rediation and did not fully recover. I have found Biotene mouth products to be a great help to me.

I am only 1 month out of 3 Cisplatins with concurrent 35 IMRT rads. I have hardly any taste but can smell it a mile away (bummer). I have found a great product though...Carnation Instant Breakfast VHC. It has a whopping 560 cal in 8oz and tastes just like Ensure Plus. I don't like either but now I only have to swallow 5 VHC's to get the same 2800 cals as in 8 Plus'. I have gained 5 of the 30 pounds I lost and I didn't have a tube (wished I did).

Ian,

46 years! That is certainly the longest survivor I've heard of. And it is a great boost to me, thanks.

Tim Stoj

Ian, I will have to set an old age survival record to equal your impressive 46 years. Your post is like a breath of fresh air here!

With regard to your lack of taste, how is your sense of smell? I ask because two people I know have for different reasons lost most sense of smell, and with it their sense of taste, and in some instances things they can taste are so altered as to be almost inedible.

Joanna,
The 2 folks you know, who lost sense of smell/taste...are they OC survivors who had radiation treatment?

Tim Stoj

No, Tim,loss of smell was due to different reasons. No rad involved.

Over 4 months from tx now and still not much improvement. I tried a donut this morning and on top of being really dry, it tasted like rancid grease. And I used to love donuts. Oh, well, I was 30lbs overweight with high blood pressure & cholesteral before this all started. I was probably headed for cardio vascular problems. Now I'm nice and slim and I'll have to find a new priority other than eating. One of the most annoying side effects of rad is the plugged & clicking ear syndrome.

My last of 33 rad treatment was 12 July this year with last of 4 chemo rounds the week prior. I began losing taste after about second week into rad treatment. I am now just over 3 months out and can tell of no noticeable change. My RO told me that on average it takes 2 to 10 months for buds to return. It gets quite depressing but I juat keep hoping taste will return soon. I am still down 25 pounds from my 180 when dx back in April. I seem to snack very little now as few snack foods taste good, especially sweets. I am also still very sensitive to spicy foods and am wondering if I will ever be able to get my weekly Mexican fix again!

Bill D

If gaining weight is your goal, try substituting Carnation VHC with 560 cals per 8 ozs. See my earlier post titled "Great Product".

Bill D,

Taste buds can take awhile to get back to normal, but don't give up hope. Since I had conventional radiation (rather than IMRT), it took me quite some time, but I got back to the point of enjoying Mexican food and certain kinds of spicy Asian foods again. Also, the taste for sweets definitely came back -- I have to ration my desserts to keep from putting on weight.

Cathy

Ian, thank you for posting!!! awesome to hear you are a 46 year survivor! God Bless, Carol

Ian, your post was a great boost to alot of people-thanks. Amy

I am 5 years out and I can recall it took about six months for most tastes to return to normal. The salivary glands were suppressed by the rediation and did not fully recover. I have found Biotene mouth products to be a great help to me.

I am only 1 month out of 3 Cisplatins with concurrent 35 IMRT rads. I have hardly any taste but can smell it a mile away (bummer). I have found a great product though...Carnation Instant Breakfast VHC. It has a whopping 560 cal in 8oz and tastes just like Ensure Plus. I don't like either but now I only have to swallow 5 VHC's to get the same 2800 cals as in 8 Plus'. I have gained 5 of the 30 pounds I lost and I didn't have a tube (wished I did).

Ian,

46 years! That is certainly the longest survivor I've heard of. And it is a great boost to me, thanks.

Tim Stoj

Ian, I will have to set an old age survival record to equal your impressive 46 years. Your post is like a breath of fresh air here!

With regard to your lack of taste, how is your sense of smell? I ask because two people I know have for different reasons lost most sense of smell, and with it their sense of taste, and in some instances things they can taste are so altered as to be almost inedible.

Joanna,
The 2 folks you know, who lost sense of smell/taste...are they OC survivors who had radiation treatment?

Tim Stoj

No, Tim,loss of smell was due to different reasons. No rad involved.

Over 4 months from tx now and still not much improvement. I tried a donut this morning and on top of being really dry, it tasted like rancid grease. And I used to love donuts. Oh, well, I was 30lbs overweight with high blood pressure & cholesteral before this all started. I was probably headed for cardio vascular problems. Now I'm nice and slim and I'll have to find a new priority other than eating. One of the most annoying side effects of rad is the plugged & clicking ear syndrome.

My last of 33 rad treatment was 12 July this year with last of 4 chemo rounds the week prior. I began losing taste after about second week into rad treatment. I am now just over 3 months out and can tell of no noticeable change. My RO told me that on average it takes 2 to 10 months for buds to return. It gets quite depressing but I juat keep hoping taste will return soon. I am still down 25 pounds from my 180 when dx back in April. I seem to snack very little now as few snack foods taste good, especially sweets. I am also still very sensitive to spicy foods and am wondering if I will ever be able to get my weekly Mexican fix again!

Bill D

If gaining weight is your goal, try substituting Carnation VHC with 560 cals per 8 ozs. See my earlier post titled "Great Product".

Bill D,

Taste buds can take awhile to get back to normal, but don't give up hope. Since I had conventional radiation (rather than IMRT), it took me quite some time, but I got back to the point of enjoying Mexican food and certain kinds of spicy Asian foods again. Also, the taste for sweets definitely came back -- I have to ration my desserts to keep from putting on weight.

Cathy