I'm at week 5 post treatment for a tongue cancer for which I had 35 daily radiation doses (70 Gray in total) and 3 Cisplatin chemo infusions. I'm through worst of the post-treatment misery and things are starting to come together now, so I'm starting to think ahead to dealing with the side effects likely to be permanent, one of which is dry sticky mouth.
I already tried a variety of proprietary products and find them mildly useful for short term symptomatic relief, but am looking for a better solution.
I've read quite a bit about successful use of acupuncture to treat dry mouth and stimulate increased saliva flow. I'm reaching out here to ask for any experience readers may have and in particular a referal for a Briabane area acupuncture practicioner people may have had success with.
I hope you are well this afternoon, sorry to read about the side effects you are experiencing, that must be incredibly frustrating for you.
Has anyone here had any experience with a dry mouth and have some insight to offer?
There's a few experiences described by a few of our members, here SPS67. Definitely have a read through.
Good to hear you have come through treatment and are starting to bounce back! that is great news.
Join the dry mouth club!....sorry to say but for me one year out of treatment my saliva production is still not back to what it was. HOWEVER, saying that it has improved....slowly very very slowing. Like from three month to three month I see improvement. I still need water with dry foods but eating is definately much less of a task than it was. I didn't try acupuncture but it is something I want to do through my natropath in the near future. In the meantime just keep your water bottle handy!
Hey its good to hear from you again, hope you've got your mojo back and getting on with living. Did the pancreas thing get sorted out?
5 weeks out for me and looking forward to when I'm a year out. I know that's wishing my life away, but I'm getting frustrated and tired with these side effects....
I'm interested to hear you go with the naturopath, and the acupuncture if you go with that.
I think our disease profile was really similar.
The acupuncture stuff is scientifically founded, it's been evidenced in studies (although technically actual saliva flow wasn't measured, it was more about patient perception -- and the groups who had acupuncture reported better saliva response than the groups who did not).
Me personally, I tried it after chemo-radiation was finished, when I understand it's actually more effective to have it before & during - to stimulate the glands then is apparently beneficial over waiting until they've been damaged.
Anyway, I tried it and ... it seemed to help a bit.
(I think that's the best you'll get, a general sense of slightly better quality and quantity of saliva from folks who tried it, and that's what the science/surveys supports)
I tried a chap at Indooroopilly, Dr Sid Lau, he was efficient and helpful, but you could probably just choose any practitioner close to your home. (Dr Lau bulk bills, incidentally):
Dr Sid Lau
Level 5, Office Tower Indooroopilly Shoppingtown 318 Moggill Rd
Indooroopilly, QLD 4068
Well done on getting through treatment , a relief I'm sure. I had a similar cancer and treatment some 11 years and have experienced dry mouth you speak of since treatment. Ive had one silivary glad removed with one remaining. Some time after treatment (with in a year I think) my oncologist gave me a phone number of an acupuncturist saying some patients are experiencing relief. I had acupuncture treatment ( needles in index fingers and in my ears ) over two consecutive day, with good success. Instantly I experience siliva ( I celebrated with a few bits of toast , not possible previously). I return for "top ups " every few years with the same result. The siliva is thin , airy and I still require water to eat most things and carry water with me all the time but definitely better.
I reside in Adelaide where I had the original treatment (www.thephysiostudio.com.au )so unable to recommend any practice in Brisbane. I did move interstate for some time and received treatment in Hobart which the physio studio sent through the treatment to an acupuncturist there. Maybe worth a call ? It has been definitely worth my while and will continue with the treatment.
Hope this helps and good luck, it does get better
Thank you Jonas, that is great news to hear. I have found a local acupuncturist that another forum member suggested but I haven't met her yet so just knowing where your needles went will give me an interesting comparison to gauge whether she knows how to treat this problem. I'll let you know how I go.
I suggest don't read too much into the needle placement.
I felt a benefit, but my needles were in the webbing of my hand (no, I'm not Spiderman, I mean that stretchy bit between thumb and forefinger), forearms and legs.
To a practitioner, they'll be about "stimulating the chi" or "opening your pathways", hey, I imagine you could even get an indian practitioner that blends the methodologies / philosophies and starts talking about your Chakra.
A scientist will say something about stimulating inflammation and the body's autoimmune response, they'll say that if it works, its for an entirely different reason to the practitioner.
At the end of the day, the main thing is that the stats show it works .. for some people. There'll be a question of degree too. I suggest going into it with an evaluative frame of mind, and having at least 2 weeks worth of treatment (or whatever the practitioner suggests), and try to guage if there's been a measurable improvement (or even a slight feeling of improvement might actually be worth it).
I can eat and swallow a sausage on Australia Day now, without having to sip water with every mouthful .. things do start to get better over time.
Be part of this supportive community