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Reflections in a Head Mirror

Reflections

8/15/2007

Turning the Corner

"It was embarrassing," she declares, partly serious. "I could not believe he was doing it."

He grins. "I couldn't help myself."

Together they tell me the story. Before his cancer treatment, he had been a big man, weighing well over 200 pounds. The radiation for his throat cancer had robbed him of his saliva and his sense of taste and, therefore, he had all but lost any desire to eat. In the early days after the treatment, everything tasted like cardboard. Some things he had loved before — things like tomatoes and pineapple, for example — still burn whenever he tries them. He had all but stopped eating for pleasure and his weight dropped into the 150s. She had been very worried about him.

The seven weeks of radiation had been difficult for both of them and they hoped a few days in Las Vegas would serve as a time of retreat and reward. Indeed, they did relax and he began to feel more like his old self.

One afternoon, they stopped by the buffet at one of the hotels. He half-heartedly picked out a plate of food and headed back to his seat. As he ate, he realized that his taste buds were responding for the first time since treatment. This food is really good!, he thought.  He finished the plate and headed back to the buffet line. She watched him in amazement.

The hotel staff was in the process of shutting down the buffet until dinnertime, but he kept going back. "Don't worry," said one of the waitresses. "Eat all you want." He took her at her word.

Again and again he returned to the buffet table. "They even had crab legs!" he marveled, realizing that he could taste them for the first time since before his cancer diagnosis. What other foods would taste good again? He became an eating machine. Back to the buffet line to find out.

He made several more roundtrips from his table to the buffet. After seven plates of food, he finally declared his eating experience complete. "Don't know where I put it all," he tells me wistfully, remembering the afternoon fondly.

Now, months later, he is at a perfect weight of 165 and estimates that 75 percent of his sense of taste has returned. She no longer worries about his eating and he makes a point of sticking to a healthy diet.

"So," I want to know, "did you eat so many things just to see if you could taste them?"

"I suppose so," he replies, then adds with a grin, "but mostly because I was really hungry. Seven plates of food! Man, was that fun."

She pokes him. "I was so embarrassed," she repeats. Then she smiles.

The following is feedback received for this blog:

  

What a lovely story! I remember my taste buds being off just from Bell's Palsy. I can only image how it must have been for him.
- rlbates
http://rlbatesmd.blogspot.com/



What a great story! I was wondering what percent of folks lose their ability to taste after radiation therapy to the throat - and what percent get that ability back (and in what time frame)?
- Val Jones, MD



Dear Val,
Loss of sense of taste varies depending on the radiation field and the amount of residual dryness. Traditionally, most patients experienced severe dryness and loss of taste if they had full course radiation for oropharyngeal, hypopharyngeal, and oral cavity cancers. These changes were usually permanent.

With the newer radiation techniques, particularly Intensity Modulated Radiation Therapy (IMRT) and TomoTherapy, much of the uninvolved tissue can be spared; therefore, there is less permanent dryness. I don't have any "real" data, but most of my patients treated this way tell me that their sense of taste comes back 70% - 80%.
-Bruce



Thanks, Bruce! Very interesting - and great news for those who have IMRT. So this is largely about dryness? Hmmm... So perhaps the salivary glands (and not so much the taste buds) are being harmed? I hadn’t thought of that. :)
- Val



It is a real problem that the patients are worried about dying and longevity when we first meet them. When they are cured, though, often the biggest concerns they have revolve around dryness, taste, and swallowing.

A friend at the University of Chicago published a paper on the problem in 2000. I have a short commentary on her work in a local newsletter
here.
-Bruce


I completed treatment for base of tongue cancer in May of 2004. Within 2 months of treatment i was eating bland foods with some satisfaction coming from taste. Now 4 years out I would welcome a complete loss of taste. i am unable to eat a regular diet and depend on Nutren for all of my nutrition. My taste has become so preverted that I dread every feeding. Between feeding I have a taste in my mouth that can not be described. A good comparison might be salty wallpaper glue. In some other post you mention the relationship to saliva production and taste. In my case I have increased saliva production but my taste continues to get worst with time. I have trouble gaining weight or staying hydrated because even water has a terrible taste. I am debating possibly getting my peg back. There may be those that recover from treatment but I am the poster child for all that can go wrong from Chemo/radiation treatment.

- William J.

Posted 5:51 AM
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Dr. Bruce Campbell
Bruce Campbell, MD
Medical College of Wisconsin Otolaryngologist
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