The Questionable Value of Salagen / Pilocarpine

I've been trying to reach some sort of conclusion about the value of taking Salagen (aka pilocarpine) to offset the dry mouth syndrome. Well, at least I am starting to question the value for my particular situation.

Pilocarpine (or the commercial name Salagen) is touted as being one solution to dry mouth. It is supposed to actually stimulate saliva production. Now, given that I'm down to one saliva gland because of the radiation treatment, I thought that it might be something worth trying. I was initially disappointed with my doctors because they didn't suggest it right off the bat. I'm beginning to understand...

Salagen is supposed to be taken 3 to 4 times per day. Each pill costs approximately $1.25 Canadian. So based on a 30 day supply, and three times a day, you can expect to be spending $112.50 per month. Is it really worth it?

The saliva output has not increased enough after two months of taking the pills steadily to make eating a 'normal' experience again. I still need copious amounts of liquid to get through a meal. There is, however, enough saliva on a regular basis that I wouldn't be overly concerned about the dental implications of dry mouth. But there are side effects.

In theory one is to take the pill an hour and a half before eating. Okay, well that helps with taking it regularly, I suppose. You will feel a bit sweaty within forty minutes of taking the pill; and its not a hard sweat, its one of those odd 'nervous' sweats that makes you feel generally uncomfortable. Mine tends to localize on my back... chilling. My nose absolutely drips! Very disconcerting to be constantly dabbing at your nose while eating... I can just imagine the discomfort this causes those I dine with. The warning with the drug is also that you will begin to urinate buckets for a brief time; true. And, to further add to the general discomfort, your stool will get loose.

The use of the drug changes the tastes of some things. I haven't quite figured out the correlation, yet, but there is a decidedly alkaline taste associated with dark chocolate, scotch, and Swiss Chalet's 'special sauce'. It seems like the 'bitter' receptors in my taste buds are enhanced...

Also in my case, the use of the drug makes me feel that I suffer from 'cotton mouth'; my tongue feels swollen; this contributes to the shift in taste. The drug enhances the 'burning tongue' feel. G. tells me that she can't hear any difference in my speech, but it does feel odd to me, and makes me self conscious when I speak for too long. I really think I sound terrible in Spanish, murdering the oral part of the lessons G. and I are taking. This does give me some concern... I'm about to begin presenting a specialized training program at work. I can't have my tongue failing me, nor can I restrict how I present because I'm afraid that my tongue will fail.

Here is a listing of known side effects taken from www.medicinenet.com:

SIDE EFFECTS: Excessive sweating (diaphoresis) is a frequent side effect of pilocarpine. Other side effects include chills, dizziness, excessive tearing, flushing, voice change, stuffy nose, tremor, increased need to urinate, visual disturbances, diarrhea, difficulty swallowing, abdominal pain, nausea, vomiting, and slow heart rate.

I hadn't even realized that some of the swallowing issues I've been having lately could be attributed to the pilocarpine.

So I took a couple of days off from the Salagen, and then started back, making a conscious attempt to note the effects, good and bad.

I am not convinced that using the Salagen/pilocarpine is worth the money for my situation. Masking the flavours of food, and the concern about my tongue are starting to outweigh the benefits. Other than the swallowing issue, I can live with the other side effects.

I think I know why the doctors were not quick to prescribe it for me.

A New Toy I Recommend for Everyone!

Last weekend I redeemed a gift certificate for a Nintendo Wii that I was given for Christmas, and I am really glad that I did. This thing is a joy! Its not your average computer gaming console, at all.

The actual machine, the 'console', is small... its actually smaller than some books I have. There are no wires from the console to the controllers, so no wires to constantly be fussing with, rearranging, or tripping over. And while there are bang-bang-shoot-'em-up games available, the real fun for G and I has been with the interactive Wii Sports games. To be fair, I did grab a Star Wars 'Light Sabre Duels' disk, and the James Bond 'Quantum of Solace' disk, but the Wii Sports is getting all the play.

When I say that it is 'interactive', I mean that it is the one gaming system that gets you off the couch and on your feet to play. The remote controllers, and they way they interface with the game actually demand that you get physical with the game. The controllers have some sort of sensor in them that tracks where you are holding it, relative to the TV, plus it tracks how fast you move it, what direction you move it, and even if you change the orientation of it while you are moving it. The golf game has you swinging like you where swinging a golf club, the tennis game has you moving and swinging, and flicking your wrist for a little extra zing, bowling requires something approximating a proper swing/release and allows for backspin and topspin through changing the orientation of the controller in your hand, and the boxing game has you really punching. You will work up a sweat... its seems to be good cardio! We played with older brother and sister-in-law on the weekend, and it was a lot of fun... especially when the sister-in-law really got into the boxing game! Holy cow! You should have seen her! Talk about repressed aggression! And last night the girls were over for dinner, and they seemed to have a blast with it as well.

We have now added a Wii Fit module to the game console... not entirely configured yet, but it shows true promise. It has a yoga programme, a basic fitness (strength and cardio) and several balance programmes embedded.

I have noticed that the demand it puts on my movement is very similar to a number of the stretching exercises that my physiotherapist assigned to get my shoulder back in shape... I can really understand why the unit is becoming a big hit in seniors' lodges.

With even the limited games that we have at the moment, I would recommend this gaming system to anyone! It engages everyone in the household... together or separately. Definitely worth a look... and it is relatively inexpensive!

That thing on the end of my nose? Not cancerous!

Over a week ago, Tuesday, January 13, 2009 to be precise, I saw Dr. Groot about the growth on the end of my nose. And, guess what? It was a wart after all! And with a very theatrical flourish, he dispensed a puff of his magic spray (liquid nitrogen)… I’m pretty sure that I was in the same room with him for less than 5 minutes. Very personable guy, but the conversation, the actual consultation was extremely superficial.

The wart and surrounding skin behaves as if it has been burned. Within two days the external wart fell off while I was washing my face… and it was a gentle scrub at that. The skin around the site blistered and scabbed. Three or four days later the scab came off with a gentle tug. Today there is a small, red blemish. I expect that to be gone within days.

Latest Swallow Tests... the videos

On December 23, 2008 I visited with Irene at iRSM, once called COMPRU, at the Misericordia Hospital for my one year post surgical swallow and speech assessment. What I have posted here are two of the fluoroscope movies that they made of me swallowing various 'weights' of things... all infused with barium so that it shows up. Thank you to Irene for sending me the clips!

This first clip is a bit dark, and a wee bit difficult to see anything unless you know what you are looking for... I will try to lighten it before I post it on the website.

In this shot, I am facing to your left. You will see my jaw open, the liquid go in, and then the route it takes down my throat. If the image is bright enough on your monitor, you will be able to see how my tongue works, and the musculature in my mouth/throat. You also should see the little flap that opens and closes to protect the windpipe as food and drink head for the oesophagus. Just keep an eye on that bit of a void above the windpipe...

This second clip is a bit easier to see, what you can see is evidence of my primary complaint. When I swallow anything with a 'heavy' or 'full' consistency, in this example its a barium infused pudding, some of the material gets trapped on a ledge above my windpipe. According to Irene, this is not that unusual with the type of surgery that I have had. This is supposed to be comforting?

For those of you who have eaten with me lately, you may begin to understand why I consume so much liquid with my meals... the first video shows simple liquids sliding right on through; this second video shows why I need to be constantly washing the food down. It is more than just the 'dry mouth' issues, which are not to be discounted, but, with the shelving effect seen in the videos, contribute to an interesting challenge.

Happy Birthday, Mom!

Today is my mother's 75th birthday!

Happy Birthday, Mom!!

Be it resolved...

...that I will spend two hours per week painting, drawing or potting.
...that I will spend two hours per week writing.
...that I will spend two hours per week reading fiction... good fiction.
...that I will see one live theatre piece per month.
...that I will get a Wii... my guilty pleasure for the year...

After an afternoon of exploring various electronics shops pricing plasma tvs of varying sizes and configurations for Scott's studio, and a separate one for their home, Scott drove me half way up the mountain that West Vancouver huddles at the foot of (Grouse Mountain?) to take in the view... unfortunately I didn't have either one of our cameras with me and was reduced to taking photos with my Blackberry...

This first photo is with the ubiquitous Scott and the Greater Vancouver Area in the background, with the inner harbour, etc; a view looking southeast.

This second photo is looking southwesterly-ish... the peninsula beyond the ships is the University of British Columbia, and the ships are in the outer harbour. These ships are ocean going cargo ships... which should give you an idea of the size of them, and therefore the scale of the view in the photo... lovely, eh?

One of the things that I have been a bit evangelistic about while I've been out here is the idea of digital eReaders. I dragged first Gordon, and now Scott off to Sony Style stores to get them to have a look at the Sony version of the eReader. The digital book is a concept who's time has just about come... Gordon seemed interested because of the amount of sales related information that could be uploaded and maintained without needed to carry around bulky product binders, while the hook with Scott seems to be the advantage it may offer to his aged mother. And me, I just want something that allows me to carry lots of books, both for reference and entertainment in a convenient, lightweight format that still allows me to make notes, add bookmarks and flip through quickly. The only thing about the current crop of eReaders out there today is that the best ones don't come in colour. Sure, they use something called eINK technology, which is very good, but they don't reproduce colour photos/drawings/charts in anything but gray scale.

I may have to hold out for another six months to a year...

Happy New Year!

Nothing really important to say today, just to wish everyone a Happy New Year...

We spent New Year's Eve at a small dinner party with friends in West Vancouver, hosted by Scott and Cheryl Swan. In attendance was the lovely and talented Merrilyn Gann, and we were joined later in the evening by the Mayor of the District of North Vancouver, Richard Walton and his wife, Celeste. The accomplishments of some of our friends never fails to amaze and amuse me...