I was fortunate to attend SPOHNC's 15th Anniversary Celebration of Life event yesterday at the New York Marriott LaGuardia Hotel. I must say that the quality of speakers was outstanding.

I wanted to tell everyone about one particular lecturer, Dr. Richard C Niemtzow, a physician and Colonel in the USAF. He also maintains a private practice College Park, MD. His lecture, titled "Acupuncture Treatment For Dry Mouth In Head And Neck Cancer Patients, was terrific and I want to share his website address with you: http://www.n5ev.com/general_info.htm.

I think that anyone suffering from xerostomia as the result of radiation, should definately visit his site. I am curious if anyone has tried this and if they were succesful or not. He has contact information on the site for anyone that might be interested in more information. He seems to be having a high rate of success with his patients. There were at least 8 people in the audience that have had their saliva restored after treatment by him. One man in particular stood up and described his feelings when he was able to lick his finger and turn a page for the first time.

I am always looking for anything that shows signs of promise for my fellow survivors and I hope this information is beneficial.

Jerry

I know that a number of posters here have tried acupuncture for dry mouth, with mixed results. When I did a search of the forum using those terms, several threads popped up with both positive and negative comments. Gail Mac did mention that Johns Hopkins has been using this for awhile with H&N patients, apparently with some success.

Brian made a good observation in one of those posts -- he pointed out that some of the studies involving acupuncture have been done during the specific post-recovery period when the normal healing process would tend to show some improvement in saliva flow anyway. (One website I found concerning this procedure did not appear to include a "control" group, i.e., not receiving acupuncture, for comparison purposes, so it was questionable to me how they demonstrated that it was acupuncture that made a difference over a period of many months.)

As someone who had XRT 17 years ago (it was the only option then), and nothing of a preventive nature to save my salivary function, I've still gotten back a surprising amount of saliva flow over an extended period of time. I originally thought that that part of the healing process was as good as it would get after a couple of years, but I was wrong -- it has continued to improve over a much longer period of time, with some help from regular use of Salagen and Biotene. As I've said before -- I now wake up sometimes during the night to find that I'm drooling on the pillow!

Jerry, For some reason that link didn't work for me.

The link contains a trailing period -- . Just backspace over it to get rid of it, and the link will work. Or click here .

Try this: http://www.n5ev.com/ It should work now.

Sorry

There have many, many discussions about acupuncture for salivary function improvement and even some traditional Chinese acupuncturists are skeptical that it can make a difference. Many here have tried it and a few claim that it has made a difference. The jury is really out on this. It's too bad that it gets otherwise reputable institutions and sources endorsing it potential benefits.

I would sure like to see some science and double blind studies instead of some testimonials based on 100 patients with no control groups.

Here is a link to what Quackwatch has to say about acupuncture http://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=acupuncture

Edited by Gsry Allsbrook

I would love to see some good scientific studies too. I'm willing to beleive it can be of help but anecdatoes will only take you so far.

That said, I will tell this one anecdote (not directly related to acupuncture and salivation) which is that my grandfather, a thoracic surgeon and researcher, spent a year practicing in China in the 1970s. Although that quackwatch site says that acupuncture is not used for anesthersia in China as often as it's proponents suggest, that may be a function of using more Western Medical practices in the last few decades.

In the 1970s, my grandfather (the ultimate skeptic about the value of acupuncture when he went there) said he saw several surgeries in which he was pretty sure the ONLY anesthetic was acupuncture and the patient appeared to experience no pain, even when the procedure being done should have been excruciating without anesthetic. Either that's a testimony to the power of placebo effects (and an indication we should look more at what placebo effects are), or he was fooled (and he was pretty had to fool about stuff like that), or there's really something to it.

Just thought I'd add that story.

Nelie

nelie

Hi Guys
Pete did try the acupuncture...given by Doc at Emory who was previously in one of the armed services. I wish I could remember his name ... Pete was not impressed after 20 treatments and many dollars... but hey.. it might work for others.
Marica

Maybe as a Chinese and someone who did give acupuncture a try for six months after finishing radiation, I can share my experience.Acupuncture has been found effective in curing a couple of illnesses especially those related to nervous system and has been gaining significance recently in Hong Kong.While there have been plenty of success stories, there are also patients who give up trying acupuncture after spending a lot of money. As I always said, what works on others may not work on ourselves. The acupuncturist I sought help from did tell me honestly that his treatment wouldn't improve my mouth dryness but could help ease my limb numbness. He also gave me some herbal tea trying to stimulate my salivary glands. I stopped visiting him during the SARS outbreak. I really couldn't feel improvement in mouth dryness or limb numbness but I have got adjusted to them and learnt to live peacefully with these side effects. I have to take sugar-free candies or gums to moisten my mouth, without which my voice can become very raspy. Little sips of water can help a lot already. Same old piece of advice. If the acupuncturist is reliable and not charging too much, you can have a try. Just make sure that he practises it in a professional way and in a sanitary environment.

Karen

Hi;

I'm writing for my husband Ken who had SCC of the left tonsil. Had 6 wks. radiation & chemo (4 treatments/"Cisplatin) Also, neck desection. This was almost 2yrs. ago and is still troubled with dry mouth/no saliva. Has anyone here tried Evoxac for dry mouth with any success? He did try Salagen which didn't help but I wonder if was because he wasn't on it long enough. He is not trying the Evoxac but has not helped yet. Of course, he also has no taste of food yet. He does use biotene every day.

Thanks for any advise/help you can give us.

Linda K.

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.

Here is what I have found to be the definitive source for published articles about medical clinical trials and studies on treating xerostomia. My thanks to Dr. Ge of the NIH for pointing me to this source. As she told me, acupuncture, like any MEDICAL treatment, is not 100% effective.

Here is the site: www.ncbi.nim.nih.gov/pubmed/19234425

Lefty

wow, digging up a three year old thread. I think it's important to note there is no treatment, medical, or so called holistic. or Eastern or new age woo woo that is 100% effective for xerostomia that I know of. But when it's less than 50 effective and mostly placebo, like acupuncture, some of us find that argument less than persuasive. Obviously, I disagree with your statement that the placebo effect of accupuncture has been disproven. This NIH reported study certainly does not show that, in fact, it throws in question the very basis of accupuncture. randomized accupuncture trial

Still, it does not hurt to try, (except for your pocketbook), and my prothodontist who specializes in oral cancer, sends his more "open" patients for accupuncture (he only smiled when I replied: you mean suggestible?) although he was pretty certain it would not help me and did not recommend it.
I liked the clinical trials that used "fake" accupuncture, that is, they felt like needles but were not, and found the same results as "real" accupuncture, but as you know, there are lots and lots of accupuncture studies with enough different conclusions for everyone. Also not generally a good sign.
Charm

Ive heard positive outcomes about using acupuncture from a couple people and my dietician. Sorry Im not familiar with any studies or trials to prove it is effective. I just have heard some good things about it.

Kinda like the Manuka honey. I was very skeptical until members had success with it. I think there have been studies that have come out since that time. But it may be effective and helpful to some people.

Im not one to put alot of faith in things other than conventional medicines and treatments. But at the same time, in some situations where its not harmful to try a different procedure or over the counter item, it may be worth a shot. Im for anything that helps get us thru this the easiest way with the best results.

Adding my own uneducated 2 cents

I never had accupunture for Xerostomia or Lymphdemia, but I did have it 14 years ago for severe sciatica due to a herniated disc recurrence, and was out of work for a month, and bed ridden. I tried everything, chiropractic, physical therapy, pain meds, anti-inflammatory, cortisone, moist heat, etc. and nothing worked. Finally I went to a Chinese acupuncturist doctor practicing here, had to pay out of pocket, and had some relief that night for the first time in a month, and slept very well. The acupuncturist told me when I got home I would urinate the toxins out, and go to sleep, which is what happened. In 4 weeks I had no pain, no meds, could walk normally, and returned to work with no low back problems since. What I was told it reduces inflammation, and cuts off the pain signal (switch) to the brain.

I would try accupuncture one day for H&N, but would speak with my conventional physicians first being so much was done there.

My husband has been receiving acupuncture treatment for 4 years. He had been completely dry for over three years the first time he had treatment. We were optimistic but hopeful. Within ten minutes he had saliva. It was a miracle to us. The drawback is there is only one Doctor that I could find to successfully treat him and he is in Maryland (we live in Seattle). On the other hand, this Doctor is amazing and worth the travel! We love this Doctor; he is worth a million bucks to us! I would be very open to elaborate on this subject to anyone who wants to hear!

Not all acupuncturists are made equal.

Oh, how interesting this all is! I, myself am seeing an acupuncturist to "assist" in my conventional treatment for PBC (Primary Biliary Cirrhosis) with my Doctor's blessings. Obviously, I take meds for this condition. My recent blood tests showed normal liver function (obviously the meds) but as my Doc said, who knows, the acupuncture could be helping! I am a believer in "complimentary" therapies as long as you follow the conventional method first. So.....I am giving my husband a little "Reiki Healing" daily in the H&N area. Who knows if it's working or not? The main thing is it gives him comfort (it's like therapeutic touch that some nurses do with sick babies) and it's not doing any harm. There are some "bogus" healers out there though and I would only go with someone who was highly recommended and then research them. I wouldn't believe anyone who says they can "cure" a disease. Important to follow your doctor's instructions and do what has been proven to heal/cure the disease. Anything else is an "assist" and entirely up to the individual.

In all I tried four different protocols and none worked and I am now 1 year post treatment with no saliva other than what I get when I take my Pilocarine pills.

I was never able to get enough info on the several clinical tests that were run to determine at what stage of recovery were the trial patients. I don't see how there could be enough patients at the same stages and enough stages to get accurate results.

I want to post some good news. 18 months out of treatment, with only a very small amount of saliva, I tried acupuncture for dry mouth again. I got significant saliva immediately after my first treatment. This continued all day long, producing enough to be able to actually spit saliva.

I've been seeing a new acupuncturist to see if acupuncture could help my peripheral neuropathy, based upon my Oncology radiologist's recommendation that she'd read that it has been helpful. It did not help me. However, I decided that since I was at the acupuncturist I'd have her give a shot at the dry mouth. I did not show her the info that I had on acupuncture protocols, she used her own, simpler than all the other protocols that I've tried: Success!

One factor that I'd never been able to find in the reviews of the clinical testing of acupuncture is how far out from the end of treatment were the subjects in the trials. Obviously that is a factor that needs be considered.

I go back for a second treatment tomorrow.

I will keep you posted as to developments.

HURRAH!

Yeah... Sometimes it's not about the treatment but the person supplying it...

Still seeing gradual improvement. I can sometimes go all night w/o using Xylimelts.