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Joined: Sep 2013
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Ambra Offline OP
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The radiation treatment, that is. Or as they call it tomotherapy, based on the machine that is being used. It is not too bad, the mask is uncomfortable but I can deal with it. The actual rads last for 477s.

I am still going to work, have been given pure writing assignments for the moment, as opposed to usual lab experiments. Also have 2 PT appointments every week, so keeping busy. Hoping that the side effects kick in as late as possible.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



Joined: Sep 2006
Posts: 8,311
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Good luck and do get plenty of calories and water each and every day for at least the next 2 years.


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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Ambra Offline OP
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So week one is over. So far everything is fine, maybe some minor throat scratching, but I am not sure if it is real or a product of my imagination. Also feeling tired, but I was feeling that even before it started, so not sure if it is a real side effect. I am starting gabapentin tonight.
I have also been seeing a cancer counselor. Results of some tests are that my stress and anxiety levels are through the roof and there is moderate depression as well. I guess that explains my inability to concentrate at work and feeling that my brain is foggy.
I was reading here about mouth rinsing with manuka honey, how does that exactly work, especially when already using salt/baking soda rinse? Are they used at different times? Is sugar from the honey a concern for the teeth, I always brush/rinse my teeth after any food, especially something that contains sugar?



36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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ngk Offline
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I used the both the baking soda/salt and the organic raw Manuka honey. Sometimes I used the Manuka right after the baking soda rinse, sometimes just whenever. It's good if you get sores I'm your mouth. Cheryld recommended it to me, she used it faithfully. it worked for me, or at least I thought it did. Maybe you can PM her. Some things work for some people, and don't for others. I wa a bit neurotic and tried almost everything suggested. AND DR APPROVED, I didn't make a move without asking my RO. I brushed my teeth alot during the day. I was so concerned about sugar, but everyone said eat sugar!! Sugar = calories! Maybe cheryld will see this and give her two cents.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Jun 2013
Posts: 18
"OCF Down Under, Kiwi"
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The measurable active ingredient in Manuka Honey is naturally occurring methylglyoxal, See this website here :
http://manukahealth.co.nz/news.cfm?article_id=136

I am neither a scientist nor medically qualified but I bought the highest UMF (22+) I could find and use that as a smear on my Fistula dressing. I have had positive and on going healing from this and although I cannot swallow have on occasions sucked the odd spoonful for added mouth relief. I give it a plus+. Some fistulas have healed completely and the general area is healed and healthy now.


Osteosarcoma radiotherapy right forequarter amputation 1961
Carcinoma of Right Larynx with subglottic extension
Total laryngectomy with right radical neck dissection 2000
Tracheostomy
Radiotherapy June-July 2001
Aggressive recurrence of the same May 2013
Neck Fistulas June 2013
P.E.G July 2013
Mi-key Oct 2013
Currently Chemo was : XELODA (Capecitabine) Now Carboplatin and now Gemcitabine !
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ngk Offline
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Oh thanks mikejwoodnz, I forgot 22+. I actually used 16+ bec I was being cheap and saved a few bucks. wink


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Hi there - for me manuka was awesome. Because it's antibacterial it actually fights cavities. Strangely enough. It's the bacteria in plaque that causes cavities. (Go figure) I used it after each meal. I would eat, brush my teeth and then use the manuka (1 teaspoon put in mouth - let melt -swish for 1-3 minutes (- it stings- but your mouth feels amazing after.) I would use it when I knew it would be a while before something else went in there then in between I would rinse frequently with the baking soda mixture or flat club soda. It is antibacterial, anti fungal and antibiotic.. Pretty awesome bees I must say. Hugs


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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There is peroxide in all honey and may explain how mouth sores heal. The methylglyoxal is an antibacterial and gives Manuka honey an additional antibiotic property. UMF is one rating scale that stands for Unique Manuka Factor and is supposed to signify the strength of the methylglyoxal in the Manuka honey. The classification may also be based on a newer scale called MGO which is the amount of methylglyoxal in mg per kg of honey.


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 2013
Posts: 94
Ambra Offline OP
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Joined: Sep 2013
Posts: 94
Thank you very much everyone on the input on the Manuka honey. I am of to order some!


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Posts: 559
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Hi Ambra:
I knew I'd find where you were currently posting sooner or later.

I'd never heard of this manuka honey stuff, but it looks like a winner, so will have to try some. My dentist gave me a bunch of old formula Biotene dry mouth rinse and gel, so will probably use them in concert for max effect.

Sorry to hear about all the stress and strain this battle with C and the treatments are putting on you. Like you, I don't have the energy levels I would like, but that's because the sore throat and mouth has never gotten any better.

I hope you have made a list of pleasant things to do to escape when the walls start closing in. Just going outside for a walk can often work wonders. Even though I don't really have the energy to play bridge well, and I'm sure the fatigue is causing me to play at less than par, I still look forward to every opportunity to play. I can always take a big nap after coming home.

Hang in there Ambra, if memory serves you're approaching 1/3 through with your rads already.

You know if you need me, I'm right here.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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