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#135229 - 06/12/11 08:54 PM Manuka not proven but may be logical  
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
klo  Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

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Sydney Australia


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
#135295 - 06/14/11 02:34 AM Re: Manuka not proven but may be logical [Re: klo]  
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Posts: 267
msmac Offline
Gold Member (200+ posts)
msmac  Offline
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Posts: 267
california
Thanks for the info. I keep seeing people mention this stuff so I am going to ask my doctor if it is something I can try during radiation.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
#135710 - 06/23/11 02:50 PM Re: Manuka not proven but may be logical [Re: msmac]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
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Patient Advocate (old timer, 2000 posts)

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Posts: 5,260
Toronto canada
Do ask your dr. It is worth the try - I found it helped me a lot.

Take care and good luck!


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
#135722 - 06/23/11 08:12 PM Re: Manuka not proven but may be logical [Re: Cheryld]  
Joined: Jun 2011
Posts: 13
SherryH Offline
Member
SherryH  Offline
Member

Joined: Jun 2011
Posts: 13
Atlanta, GA
How exactly do you use the honey?


SHERRY - 30

SCC rt lateral tongue 3/07 T1N0M0
Resection & selective neck 3/13/07
RECURRENCE 5/11
SCC rt lateral tongue T1N0M0 & Tis
Resection 5/3/11
Radiation began 6/20/11
#135795 - 06/25/11 09:01 AM Re: Manuka not proven but may be logical [Re: SherryH]  
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
klo  Offline
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"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
Sydney Australia
Hoping Cheryl will chime in here as she has actually done it. I have only researched it and stuck it on my pimples which is not terribly helpful in answering your question


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
#135797 - 06/25/11 12:46 PM Re: Manuka not proven but may be logical [Re: klo]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hi... Okay - if you are using it for mouth sores - smile

Post radiation - is almost the same as during except I used to use it 15 min prior to my rads session... Then after my session- about 15 minutes or so. Then throughout the day a few times. I chose after "eating" - since it's intended to clean, and help heal. Ultimately I would eat - rinse with the baking soda mixtue to make sure there were no particles in my mouth, then use the honey. Post rads i use it after I eat. Or if I have a flare up of some kind. (sometimes acidic foods will cause a cluster of blisters) - I'll use it then. If you're not eating usually 3-4 times a day is good. If you take it after food, then it has time to work since it's unlikely you'll be putting anything in your mouth for a bit...

(i managed to get through rads without using my peg - so I would eat or drink my meals - if you are using a peg just use it several times a day.)

If you have active sores it will sting... Then the stinging will subside and you'll feel beter.

Amount - one tablespoon - put it in your mouth- let it melt swish it around 2-4 minutes then swallow... If you do have open sores it helps but it'll take a few days. When my mouth was at it's worse - 2 weeks post rads - I used to use a bit of magic mouthwash to numb me then use the honey. Or dilute it with a small amount of warm water mix it and swish... But undiluted is the best. If you are doing rads start using it as soon as possible even if you have no mouth sores... It is preventative. smile (I have to admit... I like honey but eventually - yack!)

I do have to say it won't stop you from getting mouth sores... But it will - I believe - make them less prevalent, and less... Things started to get bad for me Around week 4 - I was becoming good friends with my magic mouthwash in a big way! Then someone suggested the honey and a couple of days later I didn't need the mouthwash, things finally got bad enogh to warrant it again 7 days after I finished treatment and that period only lasted 5 days. So I believe it worked. It made the fall out less than what it would have been had I not used it. Also I noticed - perhaps because of it's anti bacterial properties - I never got thrush.

And that's it... Hopefully it helps.

Take care.

Last edited by Cheryld; 06/25/11 12:59 PM. Reason: Spelling! Courtesy of ipad

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
#135914 - 06/28/11 06:15 PM Re: Manuka not proven but may be logical [Re: Cheryld]  
Joined: Mar 2011
Posts: 30
kellijojo Offline
Contributing Member (25+ posts)
kellijojo  Offline
Contributing Member (25+ posts)

Joined: Mar 2011
Posts: 30
MI
Could you post any ordering information? What strength, where to purchase, estimate of how long a jar lasts (to help decide how much to order.) I want to try this for my current (pre-radiation) mouth sores....and if it helped you post-rad, I'm all for having it on hand before starting treatment. (A PM is fine, if you prefer.)

Thanks
Kelli Jo

#135924 - 06/28/11 08:00 PM Re: Manuka not proven but may be logical [Re: kellijojo]  
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
klo  Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
Sydney Australia
Medicinal value is stated to be between 10-16+ UMF, although posters with success have used the 16+ UMF strength.

the most important thing to remember is to look for genuine Manuka Honey with an UMF rating as this is a trademarked standard that was developed by Dr Molan and used by the NZ beekeepers to ensure that the consumer knows their brand has been properly tested. So, you should be able to find UMF 16+ prominently on the label and it should be a product of New Zealand.

There is another rating called MGO which I know nothing about but I believe is also a tested rating system. The numbers for this range from 100 to over 450. Again, ensure the rating is clearly labelled and the honey is produced in New Zealand.

There is more information regarding dose and how to order on another thread in this section called "Relief" that will help answer your other questions. The link is below.


http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=135644#Post135644

Once last point. You can order Manuka Honey through Amazon which donates a proportion of sales to OCF so if you order through the link found at the top of the forum page you will benefit us all.


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
#135942 - 06/28/11 10:46 PM Re: Manuka not proven but may be logical [Re: klo]  
Joined: Mar 2011
Posts: 30
kellijojo Offline
Contributing Member (25+ posts)
kellijojo  Offline
Contributing Member (25+ posts)

Joined: Mar 2011
Posts: 30
MI
Thanks!

#136441 - 07/08/11 05:14 AM Re: Manuka not proven but may be logical [Re: kellijojo]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Sorry people I typed tablespoon it's actually teaspoon... Utgh! smile


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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