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