I've been taking Evoxac for almost 5 months. It seems to help me a little, but not a lot.

Chris

Linda K.,

Based on some of the posts I've read here, as well as some recent discussions with my RO, I think there is a pretty wide range of experiences with Evoxac and Salagen. I was in the clinical trials for Salagen somewhere around 16 years ago, and I turned out to be one of the people who was helped by it (I've continued to take it ever since, at a dosage of 5mg 3x daily).

It took a long time for me to see real improvement in the amount and consistency of my saliva, but it did get better gradually. I also use the Biotene products quite a bit, and sometimes chew sugarless gum.

Cathy

Recently I was away from home for a couple of days and didn't take enough salagen with me to use my normal dosage (my normal dosage is the max dosage which is 10 mg 3 X a day) for a couple of days. I saved what I had for the night and found that my mouth was feeling AWFUL by midday. Really much drier than usual. I had not realized it was making such a difference until I didn't have it!

I have been on it for about a year and 1/2 and I didn't notice much of any effect until I went on the maximum dose (thankfully it does not seem to give me any of the bad side effects some people get) but I do notice now I get these gushes of saliva and I have noticed recently they are espeically pronounced from the big salivary gland on the right back side of my mouth, which is exactly the one I was told would be partially spared by IMRT. This means that often I have too much saliva in the back of my mouth on one side and none in the front where my teeth are sticking to my gums-it's hardly the same as having normal saliva, but I do think it helps. And I have heard of people's saliva continuing to improve even after being 2 years out from treatment so I'm hopeful mine will as well.

Nelie

Jack was sent for acupuncture in the fall and was one of the people who had good results in 6 or 7 treatments. I'm not sure if it was that, or he just hit the magic recovery period, or if the amifostine was effective, or he just got lucky on the IMRT radiation but his dry mouth is better.

Regards JoAnne

My husband Barry takes Evoxac, which his ENT also takes as she had extensive radiation a number of years ago for a head/neck cancer. She and his dental onc both feel it is a superior drug to Salagen, but does not help everyone as there has to be some residual salivary gland function. Plus, of course, people vary in their response and some have adverse side effects.

Barry was started on Evoxac 3x a day. he is now taking it 1-2x a day. Some days (if it is mild and humid) he dosen't seem to need it at all. As many know (as I've posted on this before) Barry also gets a lot of mouth relief by chewing a Xylitol-containing dental gum, XylMax. This gum also reducing mouth sugars after eating, so helps a radiation patient in this way as well.

Barry saw his dental oncologist Monday, who said his salivary production is very good considering and so far, his teeth continue to be OK. He was fortunate to be able to take amifostine all the way through treatment and also, had tomoTherapy IMRT with the very precise margins which avoided more of his salivary glands than if he had had conventional IMRT.

It is probably worth trying Evoxac. I would repeat what our ENT said -- that she had relatively minor benefits for some months (using Salagen before switching to Evoxac when it became available) but all of a sudden things improved, and now she only uses the drug at night. Thus it might be some time before you see full benefits.

Gail

Just wanted to add my two cents- I tried acupuncture, and the person I went to is an MD who was trained by Dr Niemtzow. I went to two sessions and it didn't work for me. What I did like though was that the Dr was very up front about saying that it works for some people but not others, and you try it a few times and if it doesn't work then you stop. So I didn't feel like I would get roped into going to something for months on end with no results.
I'm a pretty big skeptic but I thought "what the heck" if it's only a few treatments I would try it so that I can say I've tried everything.
The Dr said after the two sessions that it was up to me to decide to return, but that he doubted it would do anything if I hadn't noticed any real increase. I decided not to go back. It didn't hurt much but it wasn't exactly pleasant! My insurance paid for it, I just paid the office visit co-pay.
Mel

My brother inlaw had throat cancer and suffers dry mouth.(carries water bottle) He and four others tried accupuncture. Only 1 of 5 said it helped. On a different level, my father had a sciatic nerve probelem in his leg and a bad back. He tried everything except surgey to no avail. One day a friend suggested accupunture and he laughed. His friend said you tried everything else, so why not. 2 treatments later he had no pain. Could not believe it. So like someone said, it has more proven abillities on the nervous system. Now that I think of it 1 out of 5, or a 20% chance is better than 0! Especially in OUR neck of the woods!

I did acupunture before and during my radiation. NOt only helped with saliva flow, but helped a lot with being able to eat. My RO had 21 OC patients at the time and I and a man I referred to my acupuncurist were the only two that didn't have to go an a feeding tube. Now my RO refers to the acpuncturist regularly. I was glad to have someone open to alternative treatments to help the radiation process.

Chris

Dear Jerry,
Thanks for the web cite. I've been looking for Dr. Niemtzow since he practiced in Bethesda. I'll often recommend acupuncture to people who don't qualify for our gene therapy for xerostomia clinical trial at NIH. As noted by others, sometimes acupuncture is found to be helpful to dry mouth symptoms. Have seen some recent multisite clinical trials using acupuncture during treatment which are enrolling but nothing for those who are years out from their radiation.
Thanks.

I got Dr. Niemtzow's acupuncture protocol and had my acupuncturist use it with absolutely no results. However, I'm more skeptical of Niemtzow than I am of Acupuncture for Dry mouth. MDAnderson has done testing as has Sloan-Kettering and the Mayo clinic and all have shown positive results. Others have, as well. One medical test was double blind using real acupuncture sites and phoney ones and the patients using real sites did significantly better than the other group, thus disproving the "placebo' affect theory.

More testing needs to be done but given that all the scientific tests say that there are no negative effects from acupuncture, it's worth a shot.

The problem, as I see it, is that there are several different protocols that have been used so there is no standardization or optimal protocol yet.

The acupuncturist that I used says that Acupuncture should be specifically designed for the individual, that one size doesn't fit all as everybody is different. Yeah, well...I agree, to some degree but....

I have tried Acupuncture for two different medical issues, in the past, unsuccessfully, so I was very skeptical about its use for dry mouth. However, having seen the number of scientific tests that confirm its effectiveness I'm continuing to explore its use. I will be using a protocol used by a husband and wife acupuncture group in Maryland and found in "The Journal of Contemporary Dental Practice" (www.thejcdp.com) Nov 15, 2004, in an article by Wang, et. al., several dentists. I'm continuing to research protocols to see what are the latest and most effective.