| | 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=Woodstockga]?...has anyone used honey or glutamine and had it help? [/quote]
Yes to both. GlutaSolv mixed in water provides epithelial cell regrowth. Honey contains peroxide that works, but Manuka honey has additional healing properties.
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 2014 Posts: 17 Member | | OP Member
Joined: Jun 2014 Posts: 17 | Thank you all for the great information! I'm holding my own right now with the food but getting harder each day so I've ordered the formula for the PEG just so I can stay as healthy as possible to get through the 2nd half of this. Taste buds went pretty much by end of 1st week.
Is there any kind of dental paste that can be used on the inside of lower lip?
Christine...I know I'm getting the water in but basically living on oatmeal, chicken and rice soup and Ensure...I need to count the calories. So far weight loss has been 6lbs. Which I didn't need anyway...lol
My biggest issue now is dealing with the not eating because I love to eat and I love all kinds of food!
Blessed day to all!
Cathy
3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49 PET Clear 4/18/14 re excis part gloss; Marg clear; R END all clean 6/12/14 start RAD IMRT x30  CathyG
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Cathy,
My specialty (if you could call it such) is in dealing with Fear,Anxiety and Uncertainty. There are practical methods of training the mind to deal with these and I've had plenty of experience in learning and passing them on.
On the other hand, I've been blessed indeed, with a body that shakes off major trauma (like bleeding out completely to the point the triage doctor and the guy who gave me 18 pts of whole blood immediately to get my heart going again) and a Flail chest the year before, the result of a very high speed auto crash, 145 mph). The later had me declared DOA at the scene, and admitted to an army hospital DOA. The morgue had all the paperwork done, and my name on a drawer while they left me unattended on a gurney while working 4 1/2 hours on the driver.
I was back to unlimited duty less than 3 months after each of those events, even cleared to resume the duties of a paratrooper.
With all that; I have limited experience with sores and really don't have a clue here. Fortunately (for you,) many, MANY of our members are truly experts in this and are as free with their accumulated wisdom as anyone could possilby ask.
Please continue to ask, everyone's experience here is unique, there is no "one-size fits all" answer to any question, so it's now up to you to be persistent. If you do, you are very likely to hear an answer that fits you also!
My very best wishes for your finding the answer that YOU need!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jun 2014 Posts: 17 Member | | OP Member
Joined: Jun 2014 Posts: 17 | Uptown..thank you for the answers on the honey and glutamine. I've started with the Manuka honey and rinsing with the glutamine powder dissolved in water. I can't seem to drink the water down. I've now gotten where I can mix the magic mouthwash with the viscous lidocaine to thin out the lidocaine..was having major gag reflex with the texture.
My Immerman angel got me started using Miaderm on my neck.
Was using Biotene until I read some older posts about the changes...
Bart you are truly a breath of fresh air and I think you probably know what I'm talking about...no bs with you and I love and appreciate that so very much.
Love to all!
CathyG
3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49 PET Clear 4/18/14 re excis part gloss; Marg clear; R END all clean 6/12/14 start RAD IMRT x30 CathyG
| | | | | 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 | You're cooking with gas now, Cathy!
Make sure you don't use hot water with Manuka honey. It destroys the methylglyoxal which is the entire difference between organic honey and Manuka honey.
You're doing great!
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 2014 Posts: 17 Member | | OP Member
Joined: Jun 2014 Posts: 17 | Hey Uptown,
Using the Manuka Honey as is...I take 1 tsp in am before treatment and then another tsp after...
My BFF was just telling me she was doing research on her bees and found that the bee glue has been used ....any experience with that?
Anyone?
Lol
Goodnight and have a blessed one!
Love to all!
CathyG
3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49 PET Clear 4/18/14 re excis part gloss; Marg clear; R END all clean 6/12/14 start RAD IMRT x30 CathyG
| | | | | 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 | Are you sure you need a teaspoon before and after? I worry a little about the sugar. What is the MGO rating of the stuff you use? The medical grade of 550 requires much less and it works much better for even thrush.
I don't know anyone that uses bee glue/propolis although I would think it works. Many here use aloe juice and it helps.
Good night!
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: 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 |
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
| | | | | 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 | Thanks for the link, Paul! I was going to add one and I burned my arm cooking some salmon. o.O
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: 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 |
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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