| Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 64 | 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
Last edited by LeftyS7; 12-20-2012 10:48 AM.
Stage 3-4 Squamous BOT diagnosed 3/19/12 Molars removed 3/29/12 (Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12 Feeding tube: 8/9/12-11/21/12 Radiation 8/10/12-8/29/12 Chemo 1X/week 8/10/12-8/22/12 Last PET/CT clear: 9/17/13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
Last edited by Charm2017; 12-21-2012 07:54 AM. Reason: toned it down
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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  ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2008 Posts: 13 Member | Member Joined: Jun 2008 Posts: 13 | 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!
Wife/Caregiver to husband Curt, 49. Tonsil SCC. Chemo and radiation completed July 2005.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Not all acupuncturists are made equal. 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2013 Posts: 23 Member | Member Joined: Mar 2013 Posts: 23 | 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.
Pamela (57) Caregiver to husband Jack (68) 2-21-13 DX BOT SCC T2, left LN's affected, Stage 4, HPV+ 3-8-13 PEG, Port for Chemo, Biopsy BOT 3-22-13 Start Cisplatin 1X Wk X 5-6 Wks, 3-25-13 Start Rad 1X Daily, 6X Wk, X 7 weeks, (42 TX) 5-11-13 finished Rad after 39 TX and 6 Wks Cisplatin
| | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 64 | 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.
Stage 3-4 Squamous BOT diagnosed 3/19/12 Molars removed 3/29/12 (Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12 Feeding tube: 8/9/12-11/21/12 Radiation 8/10/12-8/29/12 Chemo 1X/week 8/10/12-8/22/12 Last PET/CT clear: 9/17/13
| | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 64 | 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!
Stage 3-4 Squamous BOT diagnosed 3/19/12 Molars removed 3/29/12 (Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12 Feeding tube: 8/9/12-11/21/12 Radiation 8/10/12-8/29/12 Chemo 1X/week 8/10/12-8/22/12 Last PET/CT clear: 9/17/13
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yeah... Sometimes it's not about the treatment but the person supplying it... 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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