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#185721 10-07-2014 08:18 AM
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Posts: 38
JGD99 Offline OP
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Hi all,
a search had threads going back to 2006, so I thought I would post my experience so far to gauge current thinking . I was treated for Head and Neck cancer with 7 weeks of rads (& three doses of cisplatin), ending on 8/25/14. My RO, who received his medical degree in the military, told me he was impressed with a double blind acupuncture test he observed during his training. This test showed a significant improvement in patients who got the needles in correct acupuncture points (compared with the control group that got fake acupuncture on random points).

On his advice, I began treatment, and after two treatments, I think I see some improvement. It's not night & day, but I can be apart from gum or water for a bit longer, and less intense cottonmouth. Here's one cite of a paper (2008) on its effectiveness:

http://www.ncbi.nlm.nih.gov/pubmed/18784633


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
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I'm glad you found some improvement. Whatever works!


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
Joined: Jun 2013
Posts: 32
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Interesting. I was thinking about trying it. Keep us updated!


Laurie
42 yo
Pediatrician
No smoke, social drink, HPV neg
May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0)
Partial hemiglossectomy and sentinel node bx NEG
NED 5/29/13
3/2014 - Cancer back (never gone) in one right sided cervical node
Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg
30 Rads and 2 cisplatin done June 13!
PET in 3-4 months but no clinical cancer and I'll take it!
Joined: Mar 2005
Posts: 9
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I tried acupuncture for saliva flow and it didn't work for me. I also tried it to help with the burning pain associated with a horribly dry mouth. Epic failure for that too. Hope you have better luck!!

Donnamae
Stage IV SSC tongue
Hemiglossectomy/radical neck
Cisplatin/4fu
a shit ton of radiation
17 year survivor
Dx at age 41


Donna
Stage IV SSC tongue
hemmiglossectomy/radical neck/free flap
peg tube
cisplatin/5fu
a shit ton of radiation.
17 yr cancer survivor and nobody thought I'd live 5 yrs.
Joined: Jun 2014
Posts: 38
JGD99 Offline OP
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OK, we're a few weeks in, and here's my experience so far.

I was advised to come 2 X a week, but the place I chose only opens in the afternoon, and is in Salem, MA (I live across the bridge in Beverly). For those unfamiliar, Salem has in recent years fancied itself Mardi Gras for the autumn, with a month long celebration of Halloween called "Haunted Happenings". Bottom line is that the scariest thing about this event is the traffic. So I have not managed 2X per week, more once. In the week after the first session, I thought I noticed some small improvement. What I noticed is that I was home for 45 minutes, and had not poured myself a glass of water yet. I noticed the improvement because I did not need as much to remedy it. Since then, not much improvement. But after Halloween, I will be able to go more than once per week, and will make a real assessment of whether there is any there there.

By the way, I have continued with zinc, which I think is helpful for rebuilding the sense of taste. I take a zinc supplement every day, and it is almost 60 days from last rads, and I am beginning to see improvement. I said just after treatment I had about 2% of my sense of taste left, but now I'd say more like 7-10%.

I started with the umami flavors-- browned meat, roast flavors. But maple syrup tasted like water, watermelon like a cuke, etc. Now I am starting to get some sweet flavors coming in sideways, sort of. And I cooked a ciopinno (fish stew) and the broth was great. I felt like I could taste most of that, even if the tomatoes weren't registering.


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
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Likes: 2
Sounds like things are going well!


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
Joined: Sep 2014
Posts: 27
Contributing Member (25+ posts)
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Joined: Sep 2014
Posts: 27
Thanks for update! Keep us posted! Going to try acupuncture in a week or so... maybe it will help as long as it does not hurt! Our Cancer Center has a wonderful Integrated Treatment facility, the Doc that does acupuncture was familiar with the studies you referred to, he and I are going to speak in more depth next week about it.



Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14

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Posts: 7
Thanks for the zinc tip. I will try it.


Stacey
SCC Stage 3 Left Lateral Tongue and lymph nodes December 2013 -HPV (no risk factors)
37 years old at diagnosis
12/2013 Partial Tongue Gloss by local ENT(she said clear margins)
01/2014 2nd Partial Tongue Gloss and left Neck dissection with more disease found by doc at MD A
04/2014 finished 30 Rad Txs
04/2014 Hospitalized for radiation side effect. PICC line for fluids and TPN feedings
06/2014 PICC Line removed
09/2014 NED
Joined: Jun 2014
Posts: 38
JGD99 Offline OP
Contributing Member (25+ posts)
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Joined: Jun 2014
Posts: 38
Update on my acupuncture experience.

I found a practitioner near me, and made an appointment. I first saw Katie, and noticed some slight improvement after first session. Next two- three weeks I was booked with owner Stephanie, and after about 4 or five more appointments, I saw little improvement from that first session. When I discussed this with Stephanie, I mentioned I would give it another couple of tries, but that if it did not work, I would stop then.

At this point, Stephanie recommended continuing from here with Katie, since my first session was best and most effective. Apparently they use two different approaches to acupuncture. I have since seen Katie 3X, and have noticed a definite improvement in saliva flow. I would say if I lost 80% from my radiology, I may have regained 20-30% of that, though this varies. I notice I am breathing through my mouth awhile sleeping, and when I wake feel like "The Mummy" because I have zero flow then.

The improvement I am seeing is such that I do not constantly need a water glass handy, though I have one most of the time.

FYI, Katie uses a Traditional Chinese Medicine (or TCM) approach (that one works for me)and Stephanie uses a Five Elements approach that did not.

I plan to continue for a couple more treatments and then assess where I am with it.


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Sounds like there was some progress and that's always a good thing. Thanks for the update.


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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