| | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Ok cheryld I'm moving to Toronto!
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | So Saturday my son was in a motorcycle accident and had some good scrapes among other things. I was looking at wound dressings and low and behold...they now have adhesive patches that are plastic like bandaids but they are smeared with Manuka honey! We put one on a scrape on the knee and a scrape lower was not treated with Manuka. It was amazing the difference even in 24 hrs. The Manuka spot was almost completely scanned over with no swelling or redness. The difference was quite remarkable.
Ed
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Have you seen our crack head mayor on the news... I mean he's an international joke right now!!! Come to toronto, we are very accepting obviously!
They did a major study on manuka and wound healing at Sloan in NY. It was said to offer better healing than standard wound practices, also one of our members who was rather fair skinned, used to freeze dollops of it and stick them to any open sores on his neck while going through treatment - he said it worked like a charm - so awesome - I have to get some bandaids... so glad your son is okay... motorcyles can be sooooo dangerous.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Ambra - you have some great people helping you every step of the way with their experiences and suggestions PLUS Manuka Honey! Wow, wish Manuka Honey was in the picture 7 years ago when my son was in Tx. I just know you will be just fine, so hang in there and keep posting your updates!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2013 Posts: 94 | Thank you very much for the support everyone! I can not describe how much it helps.
Uptown, could you PM me the name/brand of those honey adhesive patches? Looked them up on internet but couldn't find anything.
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: Jun 2013 Posts: 18 "OCF Down Under, Kiwi" Member | | "OCF Down Under, Kiwi" Member
Joined: Jun 2013 Posts: 18 | [quote=ngk]Great...just remember what cheryl said and add the word raw too, that's where I got mine. Me prepared for the price tag! Ouch it was like $45.00. Worth it! xo [/quote]
I paid $100 for 250g of UMF 22+ and $35 for 500g of 25+ "active ingredients" both in New Zealand and organic.
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 !
| | | | | Joined: Jun 2013 Posts: 18 "OCF Down Under, Kiwi" Member | | "OCF Down Under, Kiwi" Member
Joined: Jun 2013 Posts: 18 | Here is a New Zealand site that appears (to me) reputable it has honey products including Gel and the Wound Dressings as well as various rated honey products. I am not familiar with the ratings used but naturally assume higher is better (as you do. The prices are about half of what I paid elsewhere (NZ Trademe - like Ebay). Edit forgot the site LOL : http://manukahealth.co.nz/
Last edited by mikejwoodnz; 11-07-2013 07:50 PM.
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 !
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=Ambra]
Uptown, could you PM me the name/brand of those honey adhesive patches? Looked them up on internet but couldn't find anything. [/quote]
I went and bought one but they are private labeled for CVS. The only size I have found is 8" x 3" and they are sealed along the outside so you can't trim and use. Oddly, they are manufactured in the UK. I am trying to find other manufacturers and/or sizes. Details to follow.
Ed
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 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2013 Posts: 94 | Tonight was the 10th treatment, 20 more to go.
It looks that the bad side effects are starting. My throat has started feeling dry and hurting a little. My skin is a bit red, like a mild sunburn. I am tiring more and more easily. I have to admit that I am quite disappointed, as I was hoping this things would kick in later.
Also, I could feel the gabapentin's side effects too. I get drowsy, tired and occasionally quite dizzy.
I have seen my RO on Thursday and, among other things, inquired about Manuka honey. He specifically told me not to use it. He is very academic (he is a professor at JH medical school, too) and mentioned some studies. If I understood correctly, there has been research that showed that the honey has beneficial properties. However, there are no studies that looked if this beneficial properties are for healthy cells only, or all the cells, including cancer ones. So he felt it was best not risk anything.
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: 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 | Hi Ambra, Radiation effects are usually felt between 10-14 days after starting, so it's pretty much on target. I take Gabapentin for neuropathy, but found lyrica was better, less drowsy too. The Gabapentin comes in different dosages, and the 100mg was more manageable than the 300mg. Anyway, I only like to take them at night due to it making me feel drowsy, and not 3x a day as the pain care manager wanted.
Keep up the good work, and good luck next week.
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
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