Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#118549 06-25-2010 08:06 PM
Joined: Feb 2010
Posts: 55
notself Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Feb 2010
Posts: 55
I would like to report on the results of the use of Manuka honey by my brother to prevent mucositis (mouth sores) caused by radiation.

My brother has just completed 33 radiation treatments and has finished 6 rounds of chemo. At the end of treatment, he has no mouth sores and only two small blisters under his tongue. At the first round of chemo his oncologist insisted that my brother have a peg installed. The doctor said that my brother had a 98% chance of having mouth and throat sores so bad by the end of the third week that he would need to eat through a peg. The doctor wanted the peg in before this occurred so my brother would not miss nutrition.

Well my brother used Manuka honey from the day of the first treatment. He had the consent of his radiologist and his oncologist to use the honey. Not only has the Manuka honey prevented mouth and throat sores but it has cleared up a case of mild gingivitis that he had developed after surgery. If one searches �Manuka Honey gingivitis� on the site PubMed one will find the research on gingivitis and Manuka Honey. PubMed is a site supported by the National Institute of Health.

Prior to recommending the use of Manuka Honey to my brother, I had contacted the one of the trial doctors doing research on Manuka honey as prevention of mucositis of the mouth caused by chemotherapy and radiation. Her instructions were to swish one teaspoon of raw Manuka Honey around in one�s mouth for about 30 seconds, four times a day. Use it right before radiation, right after radiation and twice more during the day. My brother followed her instructions varying only to increase the times he used the honey from 4 to 6 times a day as radiation progressed. As I have already mentioned, he ended his course of radiation with only a couple of blisters under his tongue at the last week during the �boost�. He was able to eat by mouth during the whole time.

One can find more information on this clinical trial by Googling �Manuka Honey oral cancer�. Look for the site that says �A Randomized Placebo Controlled Trial of Manuka Honey for Oral Mucositis Due to Radiation Therapy for Cancer�. The information on this trial is on the ClinicalTrials.gov web site, a service of the National Institute of Health (NIH).

There is no guarantee that Manuka Honey will work for everyone or that it will prevent all mouth sores. Of course one should get the permission of one�s doctors before using it. The results of the clinical trial are due out in August of 2011.


Brother Dx oral cancer March 23. Invasive Squamous Cell Carcinoma: Mod Dif Anterior Floor of Mouth, Peridental Soft Tissue, Right Bony Margin. Lymph Nodes 0/56 Stage II,pT2,pN0 2.8 cm
I was Dx b/cancer 9/2007. IDC Stage2 Grade2 2.4 cm 0/8 Nodes ER+ PR+ Her-2 Rad 33 no chemo.
notself #118580 06-26-2010 05:42 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
I wish that more people that wanted to put up adjunctive ideas looked into things as well as this poster. While the studies are ongoing, there is preliminary info from reliable and trusted sources. That doesn't mean it's going to end up being the next coming, it means that the idea and proof of principle evidence was good enough to get funding from credible people and institutions. We'll know more in another year about this, as to whether or not it is a meaningful and helpful adjunct.

Should some of you decide this idea is worth pursuing, please check with your treating doctors. Also remember that those of us that have radiation have high susceptibility to dental caries. If someone is going to do this, you are putting sugar directly in an environment that is already cavity prone. Something that sugar along with poor hygiene practices is public enemy number one for. Hygiene and monitoring from a dental person I think would be prudent to have at full speed while doing this.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #119136 07-07-2010 08:52 PM
Joined: Feb 2010
Posts: 55
notself Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Feb 2010
Posts: 55
I sent an email to the doctor in charge of the Manuka Honey study asking her about the risk of tooth decay. She sent me the following reference.

"This is taken from a reference (Rasghad et al)"

'Pure honey is acidic, with a pH of
around 3.9. A solubility-reducing factor present in
honey can activate in the absence of saliva.
Honey applied to radiation-induced xerotic mucosa
increases the micro-hardness of enamel, thereby preventing
caries.'

I hope this address your concerns.


Brother Dx oral cancer March 23. Invasive Squamous Cell Carcinoma: Mod Dif Anterior Floor of Mouth, Peridental Soft Tissue, Right Bony Margin. Lymph Nodes 0/56 Stage II,pT2,pN0 2.8 cm
I was Dx b/cancer 9/2007. IDC Stage2 Grade2 2.4 cm 0/8 Nodes ER+ PR+ Her-2 Rad 33 no chemo.
notself #119144 07-08-2010 12:44 AM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Well, it would appear that they disagree with the dental oncologists at MDACC who are really the only people I asked for opinions on it before I took the time to answer the original post. Since the data on this entire idea is preliminary, (not the caries, the effectiveness of honey as a reduction agent in mucocitis since there isn't a large clinical trial), I think running out and doing this is an unknown. But if people here want to do it, and obviously there are several of you that are sold on it even though the data is not robust, people should do what they wish.

OCF will not endorse the idea until it is a mainstream idea, with known outcomes. That means when multiple institutions buy into it through some kind of review process. We treat every new drug idea or treatment in the same way. From my own perspective, and I will forward this onto people that know more than me tomorrow, of course it is less soluble in a dry environment, that is a forgone conclusion, everything is; and that solubility does not address the question. If it is meant to insinuate that it stays on the mucosa and does not become viscous enough to get in between your teeth and all the micro grooves and fossas in the occlusal surfaces, that seems less than plausible. Acidic elements from Coke and lemon juice are known to be harmful to enamel and have been published on. As to increasing the mico hardness of the enamel, there is no explanation of how this might take place, and if that could be done, then the potential here would be in the general population, to help prevent caries by doing this. If micro hardness (a pretty abstract term) could be achieved, -you would have to have a mechanism for recalicifying the porosity of the enamel that comes as a radiation byproduct -we could eliminate caries in underserved and poor populations by doing so, and those are kids that do not have the $ to go to the dentist. No one anywhere has suggested that. There is a lot of grey in this statement.

Since everyone is seems happy to accept vague claims, and early stage findings, I am really done with the PM's and the back and forth on the idea until more data is abailable. Accept it if you wish. I have voiced what I believe legitimate concerns from OCF's perspective, based on opinions by oral oncologists at MDACC. It is an interesting idea. I hope it offers some serious relief 'cause I can tell you personally, really bad mucocitis had me on morphine for almost a year.... the worst experience ever. What the honey solution turns out to be 5 years from now, remains to be seen. What the data shows related to other dental issues does not exists (caries).

You are all free individuals and can do as you see appropriate along with your doctors.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #119173 07-08-2010 12:31 PM
Joined: Feb 2010
Posts: 55
notself Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Feb 2010
Posts: 55
To be on morphine for a year is horrifying. I hope you have completely recovered, Brian. The only reason I posted my brother's results was to help in some small way.



Brother Dx oral cancer March 23. Invasive Squamous Cell Carcinoma: Mod Dif Anterior Floor of Mouth, Peridental Soft Tissue, Right Bony Margin. Lymph Nodes 0/56 Stage II,pT2,pN0 2.8 cm
I was Dx b/cancer 9/2007. IDC Stage2 Grade2 2.4 cm 0/8 Nodes ER+ PR+ Her-2 Rad 33 no chemo.
notself #119178 07-08-2010 02:27 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
I have gotten to my new normal thanks for asking. But I had an unusually acute reaction to the radiation treatments, and I went through before IMRT so I got the maximum amount of dosage EVERYWHERE with very little targeting like they can now with IMRT.

This is a good thread, it's worth watching over the next year what happens with the honey, if it actually in the greater population works well, that would be way cool. I know that you just wanted to add something to help people, not push anything. If you see any new data published on it, please let us all know about it.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #119182 07-08-2010 04:16 PM
Joined: Dec 2003
Posts: 528
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: Dec 2003
Posts: 528
A bit off the topic, I know, but I am using Manuka medihoney at present for a bad head cold - it is popular here in Australia. It seems to help my with my extra dry mouth and sore throat. As far as I am concerned it is worth using because it is not going to hurt me - I don't expect it to 'cure' my cold, just alleviate some of the symptoms. Naturally I continue to look after my teeth as a priority.

I wish your brother well with his treatment. Helen


RHTonsil SCC Stage IV tx completed May 03
aussieh #119191 07-08-2010 08:56 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
My mom used to give me honey when I was a kid to sooth my sore throat during colds. It seemed to work, and of course as a kid, it was way better than regular medicine taste. Of course she also used to wipe a bit of that greasy Vicks vapo rub under my nose.... and on my chest. That was nasty!


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #119193 07-09-2010 12:47 AM
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
So it's not country specific..had both the honey and Vicks too wink


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #119202 07-09-2010 05:19 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
My grandfather swallowed a spoon full of Vicks EVERY day since I can remember and he never had any colds or flu and lived to 98 and he really didn't need to die then as he just refused medical Tx. Stubborn ole coot! So believe me I had my share of Vicks growing up.


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.
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,920
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5