Hi --

Just an update -- we visited the swallowing therapist at Hopkins again. This time she had the doctor's report and also, the images from test on her computer. The report said that Barry's epiglottis was thickened and didn't tilt enough, also there was weakness of the constrictor muscles in pharynx and of his tongue.

Using this report she had drawn up a series of exercises for him to do to strengthen tongue and pharyngeal muscles and to make him more "aware" of his swallowing motions.

I won't go into detail on these because they are specific to his case (that is, don't try this at home!), but in general they involve resistance exercises for his tongue, "hard swallowing" with him feeling his larynx move up and down, several suction exercises and one involving making certain sounds.

We did discuss some about the factors which make patients more suceptible to aspiration pneumonia. The therapist cited a large study done at VA hospitals with HNC patients who had initial swallowing problems post- treatment. The high risk factors included: poor oral hygiene (as these bacteria are usual source of the infection), tobacco use, sedentary lifestyle, feeding by another person (such as in a nursing home), other co-mordibities such as COPD. She said Barry had none of these so was unlikely to get aspiration pneumonia again but...to do the exercises to make sure!

Barry asked her how many of the HNC patients she sees who have swallowing problems post-treatment (most have some) are found to be at risk for aspiration pneumonia, and she surprised us by saying "almost 50%" so it is an issue folks should be aware of.

Also, she said that many doctors do not refer their oral cancer patients post-treatment to a swallowing/speech therapist, although this is improving. At Hopkins it is now standard protocol but a couple of years ago even there, only the surgical patients got these referrals. At local hospitals it may not happen unless the patient is proactive and requests a swallowing evaluation and referral to a therapist. (An aside, both our community hospitals have swallowing/speech therapists, so they are not only at the large CCCs).

The therapist also added -- the most important thing is compliance with the protocol -- that she finds the patients who show most improvement are the ones who generally do their exercises and who stay in contact with her if there are problems (which might mean a revision to their therapy plan).

She added that swallowing probems, as well as trismus, can "creep up" on a patient in the months after treatment due to late radiation damage and so it is important to get started on any needed therapy as soon as possible, She said, for example, that Barry should continue to do the exercises even after he feels the problems are resolved and also, continue to use his Thera-bite for at least a year. (She is also a big fan of this device).

We see her again in 6 weeks...

Gail