I finished radiation, chemo and brachytherapy at the end of July of this year. I have base of the tongue cancer. I am currently taking a pill Salagen 3 times a day to help with saliva. Does anyone have any knowledge on this medication, and if you are on it, or was in the past, did it help any? I have been taking it for about 5 weeks now, and haven't noticed any difference. Any response would be helpful.

Linroth,

I've been on Salagen (5mg 3x a day) for at least 15 years. It wasn't available when I was being treated for tongue cancer -- they started clinical trials for it a year or so after I finished, and I participated in the trials. I know there were some people in my group who didn't see any benefit from it, while others (like me) did.

Since I didn't start using it until more than a year after my radiation was finished, I can't say whether it would have helped me sooner. Depending on how much your salivary glands were "fried" by treatments, it may take some time before they can heal enough to produce saliva, even with medical stimulation.

I was warned that I might suffer permanently from dry mouth, particularly since IMRT wasn't around when I had radiation, but I've been amazed at how much salivary flow I've gotten back over time. Between the regular Salagen doses and periodic use of Biotene products (mouthwash, gel, spray, etc.), as well as the healing that comes with time, the moisture level in my mouth has gotten increasingly better. (This has also helped in terms of dental hygiene -- I still have all of my own teeth.)

You're at the stage now where the healing process can seem frustratingly slow. I remember thinking (mistakenly) that I was finished healing once I had reached the one-year anniversary of my treatment, but I was wrong. I continued to see improvement in many respects (including saliva) in the years that followed.

If you continue to get no real benefit from Salagen, you might try Evoxac to see if that helps at all -- some people find it to be more effective. (By the way, I'm one of the few other people here who also had brachtherapy.)

Cathy

linroth - please use the search function of the message board (small link riht under the forum's name). This has been discussed here quite a bit, and you will find tons of postings about it. Remember that OCF has two separate search engines to find things. One which only searches the postings here, and one on the main site which searches only that portion of the site.

Thank you so much Cathy for the reply. Where did you have your brachytherapy done? (the area of the tongue, and also the city or state). I'm just curious since I haven't had much luck finding people who had this procedure. Also for sharing about the saliva, I'll just have to be patient. I have to tell myself that everyday, because now that I'm feeling better, I just want to feel like my old self again. Everyone keeps telling me it will take time to get my strength and endurance back also. I still get tired so quickly. Thanks again.
To Brian, thank you also. I am new to this board so I don't know my way around it yet. Appreciate the reply.

Linroth,

The tubes ran from slightly left of center on my tongue down through my neck. It was done in Boston (my radiation planning was done at Dana Farber and actual treatments were in one of the adjoining hospitals).

Cathy

Cathy, Thanks again for the reply. I had 18 tubes inserted across the base of tongue and came out under the chin. Had a trach inserted and feeding tube in the nose while I stayed in the hospital in Pittsburgh for 7 days. I had 2 treatments a day for 3 days. One more question. Did you ever have surgery to remove the tumor? Or was it non-existent after the treatments? They told me if the treatments didn't work, I would have to get surgery done to remove the tumor. But they are saying the tumor goes all the way across the tongue. It didn't show up though on the pet scan I had before I began treatment. Is this normal? If anyone else out there is reading this and has heard of this, please share with me. Thank you!