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#36079 11-05-2002 05:45 AM
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I noticed in an article in the SPOHNC newsletter that a guy used acupuncture to improve his lack of salivation that resulted from radiation treatment. Then last night a man in my men's support group said that he read the same article and had been going to an acupuncturist to improve his salivation, and, apparently, it was working.
So friends, it sounds like acupuncture might really be worth looking into for some of our post-treatment ailments. If this mucus ever goes away, and I ever start eating and feeling normal again...but have other symptoms, like the dryness, I am heading to the chinese acupuncturist.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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Hi Danny:

I heard this at a recent SPOHNC meeting here in Boston too with the caveat that it is preferred that the person be a licensed MD as well who is accustomed to navigating around post-op and radiated necks. In short, I think this is an evolving complimentary therapy but the practitioner needs to be carefully checked out (and are the needles sterile???) before giving it a whirl(or a stick as the case may be).

Hey, today when I went with Dave to radiation there was a musician playing a harp in the waiting area which I thought was really soothing. This was second only to the following announcement after someone lit up in the ladies' room:

"There will be no smoking in the radiation oncology waiting area".

I'm adding that one to the novel Dave and I are writing. Every day is a new adventure!

Cheers,

Kim


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Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
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We have that news article posted in our oral cancer news section on the web site as well. But kcdc is right...this result is anecdotal in nature. There is no peer reviewed published data that shows that this actually works on any significant scale. The San Diego study of 50 people (not a big study population) showed that about 25% of them had an improvement. Also this quote from the article


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Although I am skeptical about the benefit I just started acupuncture. I had one of my surgeries at the Mayo Clinic and at one visit asked the dr if he had heard about acupuncture for salivary gland function. I ended up being referred to the dr in the pain clinic who does acupuncture for pain and he has recently been working with a radiation oncologist to study the effects of acupuncture. They have done one very small preliminary study and showed some improvement in about 50% of patients. However, he was not able to quantify what improvement really meant in practical terms. In any event I figured it couldn't hurt to try. I have had 3 treatments of the six total. I have not been given candy to suck at the treatments as described in the previous study Brian referred to. To date I don't think I've noticed improvement but I will continue and let you know the results.


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
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Now speaking of proper studies, if your horse didn't tell you it was helping, can you be sure it wasn't? or is the proof (one way or the other) tied up in what ever he says to you?

laugh

And hi to my neighbor Ilene.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Well, acupuncture is rather common in Hong Kong and I did go for a try several months ago to treat the numbness of my four limbs. I mentioned to the acupunturist my dry mouth problem and asked his advice on whether acupuncture could help improve the problem. He shook his head and said that as far as he knew, there was very little effect, if any, to recover saliva glands by using acupunture. I went to his clinic every Saturday to have needles pricked into my four limbs for about six months and stopped in April when the SARS problem was severe in Hong Kong. I don't know whether it was acupuncture or my swimming exercise that helped, the numbness of my limbs did undergo some obvious improvement. Dry mouth is still dry.

Karen stage 4 tonsil cancer diagnosed in 9/01.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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I had my sixth and last acupuncture treatment the second week of October. As of today I don't feel any difference in the saliva output. In fact as winter arrives in Duluth with the low humidity I am finding the increased dryness I've come to expect this time of year. At this point I think it is unlikely that I will have any improvement. Actually I'm sure it was always unlikely but I was willing to try it and tried hard to believe it would work - I'd be happy to settle for placebo effect if I felt better. The best result I have had was sitting in a steam room while on a cruise last winter. It was wonderful to feel moisture. Our next remodeling project may include a steam shower.

PS - Hi back to Mark


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
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Thank you for being diligent in posting a follow up regarding your experiences with acupuncture for salivary rehabilitation. It is always good to hear first hand the outcome that an individual gets from any given treatment. Hopefully one day there will be something new on the medical front that will help us. But it appears that this will not be it.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Kristin posted a recent question about acupuncture and salivary stimulation. A few months back, someone brought up the topic, and I figured 'why not'. Last week concluded my intensive treatment of 2x/week for 5 weeks. Although I HATE the needles in the ear/finger, I have to admit I've noticed a thankful (albeit small) change. They did not do the sugarless candy, although I randomly sucked on it a couple times after treatment and noticed a positive change (didn't know that it was sometimes used in treatment, as Brian mentioned). That being said, my teeth would subsequently hurt (sensitive, I guess), so I've stopped with the candy.

Just to recap - I went through 56 GrYs of normal radiation for 6.5 weeks, then 16-18 GrYs (can't recall which) of brachey therapy for 30-something straight hours. Rads ended mid-May, Brachey ended mid-June.

Is it like it used to be? No. Do I feel like my mouth is the Sahara Desert anymore? No! There's enough saliva coating to make me comfortable. I'm not sucking down the water as frequently as before, I can talk longer w/o drinking water, I can make short trips in the car w/o feeling panicked w/o my water, etc.

Through acupuncture treatment, the salivary production was spotty (went from real moist for a few days, to Sahara Desert for a few days). It seems a bit more stable now.

That being said, my throat is still dry at night, but I can get through the night w/o water. Some people may not feel the $$ is worth the comfort I rec'd, but I feel it was worth it (and that's truthfully all that matters). The reduced "No Water Panick" attacks alone was worth it to me - but it may not be worth it to you.

The woman I see is part of the Harvard/Partners program in Boston. If you're interested in seeing or speaking with her, just shoot me an email and I'll send you her contact info.

Sabrina

PS - needles are sterile, she wipes down the body areas with alcohol before and (if necessary) after, if she touches them it is with gloved hands.

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Sabrina,

You really have to be careful, though, 'cause I heard it has caused some erratic and bizarre dances in some people!

eek


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Snort, nose wrinkle, and tongue out to you!! smile

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Hello everyone,
Sabrina that might have been my post about acupuncture you read. My husband tried it for a couple of months, at $110.00 per visit, no insurance coverage,it was quite expensive . We went to a Professor of Radiology at Emory University in Atlanta. He also used the candy as a function indicator. We were so desperate to find 'something ' that we kinda talked ourselves into believing it was working. The good news is , he is a year out of treatment and is finding his mouth is getting moister, is that a word? Anyway, he is more comfortable now but I really dont think the acupuncture had anything to do with it . Hopefully you will have more success with it.

Take care
Marica

Caregiver to husband Pete. SCC base of tongue stage IV, DX 4/03 rad/chemo no surgery.


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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I tried accupuncture for about 6 weeks, it costs $70 a treatment, insurance would not cover it. I think I wanted it to help so much that initially it did, maybe a little. But after a few weeks, I really didn't see the need to keep going. However, I think it is awesome that Doctors are trying to come up with ways to help our dry mouths...SMILE!!God Bless!!!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Talking about radical ways to save the salivary glands - I heard of a plan to surgically move them out of the way of radiation then putting them back when rad is completed.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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A variety of things effect PERCEPTION of benefit. If you are less than 2 years out from radiation, there is very small monthly, incremental, increases in salivary output from the remaining (usually submandibular) gland that gets very little radiation in most cases. This continues for approximate 18-20 months after treatment, so a sense of improvement in the 14th month for instance may not have anything to do with acupuncture, if it was being tried at the same time. There is an adaptive biological process that is also part psychological. I have learned to keep my mouth shut more over the last couple of years, and surprisingly enough that helps reduce my need for constant sips of water. I now do this subconsciously, and I also drink less water. I guess if someone asked me I would say my need for water is reduced now. If I had been having acupuncture at the same time, which do you think I would assume caused it? A treatment, or an adaptive behavior that I wasn't completely conscious of? When I feel congested and start mouth breathing subconsciously, I am more dependent on the bottle; nose spray (decongestant) again helps me keep my mouth closed. Adaptive behavior on a conscious level.

I bet anyone here that if they put a small piece of candy in their mouth for a while, that it will cause whatever salivary function that they have left, no matter how small, to increase. I just find it amazing that instead of looking at the obvious answer to something, (which is usually the simplest) people will invariably attach the result to something less likely. Human nature


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I agree that there are a number of incremental, simple things you can do to help cope with dry mouth problems. (Amifostine and IMRT were not an option for me way back when...) I've gotten into a routine that includes Salagen (regularly for the past 13 years), Biotene products, sugarless gum and making sure a water supply isn't too far away. If any one of them is missing, I notice a little bit of a change; if all of them are missing, I'm in trouble.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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Dry mouth is the most frustrating side effect I suffer from the treatment especially I need to talk a lot as a teacher. I don't quite believe that acupuncture can help improve the situation even though some acupuncturists claim that it is very useful. I don't give it a try because it is very troublesome and time consuming. They often say that you need to have the therapy continuously for several months before you see the slight effect. I don't have the patience,the time and above all, the faith. Like Cathy, I have found stuff that helps me ease my dry feeling. If you open my handbag, you can see a small bottle of water,different packs of sugar free candies and a pack of sugar free chewing gum. If I forget to bring all these items ( which I have not so far), I will be in serious trouble.

Karen.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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It is funny, I guess, for the lack of a better word. But every since the neck dissection, I have so much saliva that I need a bib. Before that I had none. So this is strange for me. I wish it was dry so I could talk, we are never happy are we?? But since I cannot swallow all the saliva just sits in my mouth. So I have to suction it out to talk...Bummer....Just wanted to tell you about my new experience with the salvary glands....miss vicki

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As I reread this topic I found my post from last year when I was just starting acupunture. I had the treatment at the pain clinic at Mayo in Rochester MN. My doctor is a MD in the pain clinic who became interested in acupuncture some years ago and trained extensively. He was doing some research on the effectiveness on salivary glands but I was not part of the study. He did not use the candy or do any measurements of my saliva production. However, both he and my surgeon said that the "statistical" result was of little meaning as opposed to how I felt. I really really wanted this to work but I don't think there was any noticable improvement as a result. I figured it was worth a try

ilene


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
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