| Joined: Dec 2007 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Dec 2007 Posts: 138 | Hello everyone! It's been a while since I've been here, but I just wanted to share the following information with you if you are still suffering with a chronic dry mouth. I do not know if this procedure really works for people who have damage to their salivary glads from radiation, but I am thinking about giving it a try once I save up the money. My insurance will not cover it. Also, if any of you have had this treatment, or any similar treatment, have you found it to be successful?
Last edited by ChristineB; 10-12-2012 06:01 AM. Reason: removed link
Nine years out. New normal with limitations, but surviving and living life to the fullest.
| | | | 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 | Read the fine print of the website and you can answer for yourself how legitimate this site is. I have removed the link as it appears to me to be just another place that is trying to benefit from sick people. Just imagine if a 'secret' cure for something really was discovered, wouldnt they have it all over the news? In the future, please feel free to send a PM to myself or any of the admin asking for their input prior to posting any similar links.
Teeny tiny fine print on bottom of the website .... The information and statements contained in this website have not been evaluated by the Food and Drug Administration, and are not intended to diagnose, treat, cure or prevent any disease. The contents of this website are for informational purposes only are is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Your reliance on any information provided by Dr. L***s website, any referenced parties is solely at your own risk. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard medical advice, or delay seeking medical advice or treatment, because of information contained in this website. This website expresses Dr. L***s health care views, and describes wellness-based, natural treatment methods, and must not be misconstrued as direct treatment advice�it is information only.
PS... There have been other posts about accupuncture on the forum. Use the search function to check out those posts. 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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | During our visit this past Monday, we just asked both the med onc and rad onc at U of C about this treatment for dry mouth. Their experience is that about half of their patients have found some relief, so it's far from guaranteed. If they do get relief, it usually happens quickly (after 1 tx). The med onc has a list of providers his patients have had good experiences with, my husband plans on trying one.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Dec 2007 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Dec 2007 Posts: 138 | The video on their website is of a local news report. I don't know if it works in cancer cases such as those on this forum, but I suppose it is directed to those who need hope. Thanks for your input.
Nine years out. New normal with limitations, but surviving and living life to the fullest.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I'll repeat what I've said in previous posts and that is our experience with posters on this site that have tried the needle for dry mouth, it's 50/50 and the ones that do claim increased saliva it seems to be temporary.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Acupuncture for Dry Mouth is a tough issue that I've avoided since once again I have to be the bad guy telling everyone that Magic does not work except for the true believers. Just like the Voodoo doctors could put a hex and kill the superstitious villagers while the Explorer scoffed and lived, just laughing off the mumbo jumbo, all these woo woo folk count on our inate wish to believe. At best, it works for 50% and never long just like every placebo. 50% want to believe so like all placebo treatments, it works for the true believers and medically gullible. so unfair to those of us who live in the real world. any study without a true �sham� acupuncture arm is worthless, and well-designed studies show �sham� acupuncture to be no different than �real� acupuncture; i.e., no different than placebo. All the test purporting to prove accupuncture are really flawed like the boggest German one half ass German study on accupunture no one wants to deal with the fact that when double blind tests are done on acupuncture and instead of needles, just a blunt pin is applied, the results are the same for both the acupuncture group and the fake groups. Here is a funny one about where the sham accupunture actually worked better than the needles Sham acupuncure better than real All the CAM stuff is just wishful thinking that we lived in a Harry Potter world instead of our poor muggle one where we have to muddle through with boring old scientific medicine. Charm 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: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | I'm not sure about dry mouth but the premise of acupuncture - is blood flow and nerve stimulation or deadening (where pain is concerned) Tissue that has been radiated tends to be burned, stiff, scarred and eventually can become fibrotic - non functional. (major cause of trismus too) Returning blood flow to these areas helps heal! And clean out the crap. It softens tissue, helps to prevent fibrosis and breaks up forming scar tissue. My neck was a mess post op. particularly along the scar - at his point thanks to acupuncture (and some physio for stretching) - I have 100 % range of motion, minimal stiffness and about 85 % of my sensation has returned. My neck feels soft and normal to touch. A study not too long ago involving people who were deemed to be on tube feeds for the rest of their lives showed a big improvement (I think 75% ) we're able to get off the tube with acupuncture. This said - its like anything else - prevention is the key - the sooner you get to work on it the better chance you have of improvement (if you don't use it you lose it - is very true - and there is a point of no return). So if you wait 2 years - then chances are you will see little or no improvment - it's all about being proactive not reactive (something the medical industry is notorious for - they Like to wait and see - but they're playing with people's lives and QOL) - so I can't speak to this clinic, or their practices, and I can't even speak to the production of saliva (mine has returned about 50% - but I was not seeking relief from dry mouth) but I can say acupuncture performed by a qualified naturopathic dr can help certain things. If nothng else it's a sound medical concept.
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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | WOO WOO alert. Acupuncture is as far from a sound medical concept as possible. The "premise" of accupuncture is explained by the Mayo clinic [quote]Traditional Chinese medicine explains acupuncture as a technique for balancing the flow of energy or life force � known as qi or chi (CHEE) � believed to flow through pathways (meridians) in your body. By inserting needles into specific points along these meridians, acupuncture practitioners believe that your energy flow will re-balance. [/quote] Not one valid Scientific study or any competent not faked research has not found any histological or physiological correlates for qi, meridians and acupuncture points. I like the droll commentary on the Mayo Clinic about "results" [quote]The benefits of acupuncture are sometimes difficult to measure, but many people find it helpful as a means to control a variety of painful conditions.
Several studies, however, indicate that some types of simulated acupuncture appear to work just as well as real acupuncture. There also is evidence that acupuncture works best in people who expect it to work. [/quote]
Again, I'm glad a placebo worked for you but it only "sounds" like a medical concept, it's not. Real physical therapy can and does restore your neck. The only thing a "naturophatic" doctor can help is any back pain from having too much money in your wallet. It's this Vodoo science week at OCF? Charm 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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | One of my riding buddies is a board certified neurologist, an MD not an MO. She offers accupunture to her patients as one of the weapons in her arsenal. She feels that experimentation that produced acupuncture as a therapy was likely related to torture.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | One reason why so many people get tricked by acupuncture is worthless studies that get reported in sensational ways such as the one cited by Cheryl . It was based on 3 Chinese studies that would not meet American standards for accuracy so they tried to do it by our wicked Western scientific rules. [quote]study not too long ago involving people who were deemed to be on tube feeds for the rest of their lives showed a big improvement (I think 75% ) we're able to get off the tube with acupuncture. [/quote] There were a grand total of 10 patients who were also getting standard swallowing therapy plus "electrical accupunture" which is a version of VitaStim electrical therapy. Hardly Qi but plain old AC/DC that makes frog legs jump and can also jump start stalled swallowing muscles. Oh and already before they started the accupuncture, 3 of those patients were no longer feeding tube dependent, but they gave them the accupunture treatment anyway. That's always a good way to raise your success rates, treat the ones cured. Not one of these patients even remotely fit the description of "deemed to be on tube feeds for the rest of their lives".So they got 6 patients off the PEG at best two months before they would have been off the PEG anyway based on the Modified Barim Swallowing test even if they had zero accupunture at all. I am impressed with how honest these doctors were in admitting all this, albeit in confusing medicalise At least the authors had the honesty to conclude: H[quote]owever, without prospective and comparative studies, the benefits of acupuncture for dysphagia in this population can not be definitively established.[/quote] You can read the full study here: Manuscript for peer related journal Oh, and I almost forgot they used infrared heat lamps on the legs which not surprisingly made the patients feel better 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
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