I had severe xerostomia (dry mouth) and dysguesia (distorted taste) for nearly a year and was finally helped by an acupuncturist at NIH (National Institutes of Health). They only did one acupuncture treatment because they worried about too much chemo still in my system but they also taught me a couple of acupressure techniques that I still use.
Just in front of your ears, from you forehead to your jawline, gently massage with up and down strokes for one minute morning and night. Just below your lower lip, center, massage with a single finger in circular motion for one minute twice daily. This stimulates the salivary glands which also helps with the taste problems. I was a skeptic but it helped me. I hope it might help others, as well.
Karen
Does it help if we jump up and down on one leg while singing the national anthem and rubing our belly with the other hand? Sorry couldn't help myself.
Yeah, probably make you drool....and in your case it has to be on the bike. :-)
I saw an abstract on this at either this year or last years ASCO congress. Will try and dig it up
NIH was doing a study with Sjogrens patients for acupuncture and dry mouth. I was a participant in another of their studies for graft vs. host disease last year and they asked me to try it as my symptoms are similar to those of a Sjogrens patient. I was a skeptic but figured it wouldn't hurt to try, and I like being able to contribute to scientific research. I was pleasantly surprised that a single treatment brought a significant improvement. I asked my transplant doc if it might just be coincidental timing since I was nearly a year out from transplant but they thought not because the improvement was abrupt rather than gradual.
Hey, it can't hurt. Even if it doesn't do the trick, it seems to be pretty harmless.
Were your results included in their study of Sjogrens patients and accupressure?
Christine,
My results were not included as I was not a formal participant. As I recall, the study called for a total of 6 treatments. I had only one. The acupuncturist read my entire medical history while I was resting quietly with the needles in place. She decided she would prefer not to do more treatments until my system was clear of chemo for at least six months. She taught me the acupressure massage. I still have some dryness - my left parotid is nonfunctional - but I can eat and speak normally now whereas before I could not without liquids. Some of that is most likely due to time and healing but I have no doubts that the treatment accelerated the process in my case.
Acupuncture has gained acceptance in mainstream Western medicine in recent decades, and there are many theories about why it works, but as far as I know, nothing definitive. It does make for interesting reading though.
Karen
I have found the study I referred to a few days ago which appeared at the ASCO conference this year.
It was a cross over study. This is a nice design for this sort of thing that puts half the patients on one of the treatments for an allotted time, and then have a "do nothing" period called washout, before "crossing over" to the other treatment. The other half of the group do the same thing but reverse the treatments. This helps off set the possibility that something other than the treatment under investigation was responsible for any effect (such as the patient was going to get better anyway).
Anyway, onto the study:
145 patients (big) were randomised to one group or the other. the patients were all head and neck survivors with xerostomia (dry mouth)of more than 18 months out from treatment. They compared standardised oral care education with 8 weekly treatments of acupuncture. The study found that both education and acupuncture improved patient reported symptoms but acupuncture helped more people. 24% in one group experienced improvement with acupuncture with 19% for education, whilst in the other group 26% improved after acupuncture and 14% after education.
The symptoms that acupunture improved significantly more than education were: sticky saliva, need to sip to swallow food, and waking up at night needing to drink. The downside to these results is that they were scored according to patient ratings which is a bit subjective. Howevever, in my view it doesn't matter if nothing actually happened - the important thing is that the patient believes they are in a better place as a result.
There was no significant difference between the treatments in terms of saliva production unfortunately.
The investigators concluded
[quote]No adverse events were seen. Eight sessions of weekly group acupuncture provides significantly better relief of radiation induced xerostomia than group oral care education.[/quote]
If anyone wants to read the whole thing themselves the paper was presented at ASCO 2012 by Simock R et al and was titled ARIX: A randomized trial of acupuncture versus oral care sessions in patients with chronic radiation-induced xerostomia following treatment for head and neck cancer and appeared in J Clin Oncol 30, 2012 (suppl; abstr 5527)
Karen, I have been researching acupuncture as a treatment for dry mouth and have read about several of the studies including ones at Sloan-Kettering, MDAnderson and Mayo Clinic. It appears that there is scientific verification of acupuncture as helping to produce saliva. I have a local acupuncturist who is willing to work with me and we used a treatment protocol developed by Dr. Niemtzow who is a M.D. who developed the treatment while working as a Doctor in the military in a military hospital in Southern California. The treatment did not work for me and I am looking for another protocol to try as I have heard from former cancer patients who have tried acupuncture with success.
Also, do you have a web address where the R.Simock paper can be found?
I would very much appreciate it if you would give me contact info for your acupuncturist so that I can get a treatment protocol from him/her to try.
Thank you.
Karen, I was hoping that I could contact the NIH on my own to locate your acupuncturist but that clearly is an impossible task.
The study you reference was done in the UK so I don't want to have to call there.
The NIH is huge and includes the NCI, help tracking down the acupuncturist that you used would be greatly appreciated.
Thanks, John
I've been trying the Acupressure recommended and it does seem to produce some immediate results. Not long lasting but the cumulative effect of doing it daily may be. Thanks for the suggestion.
Hi John,
So sorry for the delay in reponding to your message. I just got out of the hospital today and am still catching up on my reading and replies.
I'll send you a PM with NIH contact info from last year. Even if it isn't still good, it should get younto someone who can pointbyou in thevright direction. Best of luck and please keep me posted on what happens!