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#155666 10-04-2012 03:20 PM
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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


mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
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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.


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.
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Yeah, probably make you drool....and in your case it has to be on the bike. :-)


mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
Joined: May 2010
Posts: 638
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I saw an abstract on this at either this year or last years ASCO congress. Will try and dig it up


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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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.


mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
Joined: Sep 2006
Posts: 8,311
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Sign us all up!


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.
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Hey, it can't hurt. Even if it doesn't do the trick, it seems to be pretty harmless.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Were your results included in their study of Sjogrens patients and accupressure?


Christine
SCC 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 smile
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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


mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
Joined: May 2010
Posts: 638
klo Offline
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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
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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