| Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | OP "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | I Am suffering this weekend with ulcers and sore mouth. Has anyone got any good tips? I have been rinsing with salt water and have used cordysyl mouthwash but am worried as it has alcohol in it. I have docs on tuesday but hought I'd see if you guys had any thing that really worked for you. Thanks Jayne x
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Earlier someone posted about the benefits of Manuka Honey and I am usually very sceptical about such things, but decided to try it. I was and continue to be very impressed. Give it a try. It should say UMF 16+ to have the maximum effect.
Let me know what you think if you try it.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Was glad to see this post! Just yesterday I bought an 8.8 oz jar of Organic Manuka Honey ($28) at the health foods store. The jar says 15+ so I hope that's good enough. I got it to apply topically to a tiny blemish on the side of my nose which my dermitologist biopsied some time ago and found to be ok. My daughter also has a similar area on her nose, biopsied w/same results. The honey I bought is mainly to be taken by mouth. Seems like the blemish disappears and reappears and I am probably due for another dermitologist check up soon. I noticed the MH is also available online and they offer a variety for topical application and I've been wondering if that makes a difference other than maybe being "non-sticky". If I apply the sticky "by-mouth" kind to my nose and then go do my power walk outside, will I be too attractive to some of the local honey bees?
Last edited by Anne-Marie; 06-12-2011 07:30 AM. Reason: typo
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im not familiar with the cordysyl mouthwash you are using. Ask your doc for something called magic mouthwash. Its a prescription formula and can be made several different ways. Mine was benedryl, malox, and lidocaine. It will numb your mouth long enough for you to eat. As far as the Manuka Honey goes, it has not been officially trialed and proven to work. However, several members on here have used it successfully. There are several different strengths available at the health food stores. Im sure someone who has used this will help guide you. Here is a list of easy to eat foods that might help. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621 ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | 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 | Hey there I used it the Manuka honey from week 3 and it definitely helped! For mouth sores - I would take a mouthful 15 minutes before radiation - let it melt - and swish for 2-3 muntes - then do it again after. - I also did it after meals - alternately I used the baking soda mix - and or club soda - flat!! You can swallow the club soda- it helps with the thoat.
Organic Manuka honey - is the best - Willmaine suggested -16-20 something strength but anything above 16 has been manipulated by man so I stuck with the 16.
It really helps but can sting when your sores are open - this only lasts a few minutes though - then they feel numb- if it's really painful take a about a mouthful of warm water mixed with the teaspoon of honey blend them and swish that. I did this the two weeks after radiation. Because of this I had very few sores - some pain - but recovery was fast. 5 weeks out I have just a few unbroken blisters - and bit of a sore throat that comes and goes - based on how dry I am. (usually worse in the morning) and what I've eaten (tomato sauce is still not my friend!!!! )
With regards to topical use - go for it. Not sure about the bees but they do use it - for skin wounds - I know it's sticky - but I would go with the actual organic honey as the topical stuff though not sticky may have other stuff in it...
There are other mouthwashes out there without alcohol. Do not use anything with alcohol without consulting your dr. I use a mouthwash called Toms of Maine - it's natural minty and baking soda based - no alcohol - but I use it just to freshen - if you want something for pain magic mouthwash is it.
Hugs. -and feel better soon.
Last edited by Cheryld; 06-12-2011 12:23 PM.
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 | Thanks, Cheryl - this is great information! What I have is the "Certified Organic New Zealand Manuka Honey. It does say only 15+, though but having used it just last nite on a tiny blemish on my nose, it looks all better today. I noticed the Manuka Honey is a lot cheaper online and you can help OCF as well by going thru their Amazon affiliated site: http://www.amazon.com/?ie=UTF8&%2AVersion%2A=1&tag=oralcancerfou-20&link_code=hom&%2Aentries%2A=0
Jayne, hope the mouth sores improve. My son also used the Magic Mouthwash and it helped. I wish he had had the Manuka Honey at the time he had the mouth sores. It's certainly seems to be worth a try.
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: 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 | The thing with the honey is it's natural and really can't hurt - I'm not a fan of the mouthwash - but did use it when things were really bad for about 3 days at the end!! (constancy of it is gross - and the taste not very good!! Btw I didn't mention this - you swish and swallow the honey as it will help the throat as well.
Glad it worked on the blemish!! I love that it's natural and helps - beats drugs and medications by a big margin.
Take care!!
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Sorry Cheryl
As you know I am a fan of Manuka Honey but not because it is natural. I am so vehmently opposed to the concept that "natural" can't hurt that I must respond.
My enduring memory during my time as a nurse was witnessing the anguish of a mother after being told her child had died due to the administration of 1 teaspoon of Royal Jelly. She had administered the "natural" remedy to her developmentally disabled daughter because she had read somewhere that Royal Jelly is brain food.
So maybe a caution is in order. Natural is not a synonym for safe
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 Still underweight
| | | | 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 | Absolutely. I always ask the dr. Prior to anything like that. When Will suggested the manuka honey - I first looked it up to see if there were any contraindications (if it was an antioxidant in particular) that would work against the radiation, then i educated myself about it, and its properties, then I asked my dr. (RO) prior to even trying it. I'm a big proponent of healthy and natural stuff, but before we start taking things - especially herbs and naturopathic pills etc... It is best to educate yourself and then talk to your dr. What I meant to say was in this particular case the honey is natural, you aren't ingesting it ( with regards to the use of it on a blemish ) so it's great it works topically and is natural. but before anyone puts anytng in their mouth (that's something they don't know anything about) it's always important to check with a dr. - on the other hand this is honey... So it's something a lot of people eat regularly on toast, in cereal and so on.... So in a way its like calling the dr. And asking if it's okay to add strawberry jam to your diet. However because of my treatments I verified it first.
Take care.
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: Jun 2011 Posts: 12 Member | Member Joined: Jun 2011 Posts: 12 | my mom is getting ready to start radiation and I think Im going to go out and get this manuka honey for her. thank you for sharing, it helps to hear others stories. I hope you feel better soon Jayne x | | |
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