| Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 |
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | MaineWill
Do you mix this all with your Manuka Honey? Sounds more like a dessert menu than a therapeutic one [and yes, I am making fun of you this time unlike the last ;)]
CQ 10 (ubiquinol) isn't usually needed unless you are taking a statin drug like Lipitor, although the Vitamin D is probably a good idea. None of this is going to hurt you IMO but it's just new age placebos. It's really moot since you have started radiation and are off all of this except for your honey. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Know what charm... I have to tell you -- I'm week 4 - had some mouth sores... The ones on my cheek and gums weren't too bad.. The ones on my lateral tongue were painful. Anyway I took will's advice. And guess what - I've used the honey for 3 days the ones on my cheek and gums are almost gone and e worst one on my tongue is way less sensitive. - now I'm not one to dive in with out research... So I looked it up - apparently - it is natures version of hydrogen peroxide. It is antibacterial, anti fungal, and fights infection and inflammation. And it doesn't taste too bad. They are doing clinical trials with it at a BC cancer hospital - have been for 2 years - the study is due to end in august. And Sloan ketterling did trials with it on with wound healing... 4 studies actually.. And in three of them it showed improved healing - more so than the modern medicines used... So - not bad for bee's pee. 
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: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2011 Posts: 131 Likes: 5 | And the Manuke Honey debate rolls on. Still no mouth sores but I do have some burns on my neck and even my back. Today was the 1st day of week 5. So...I talked to my RO techs and they showed me where the beams are going. They are very concentrated on my left tonsil where my primary was and not too much around my mouth and tongue. However, there is even less on my upper back and I have burns all over it. They start out like freckles, harden, turn into blisters, and then scabs that are VERY sensitive and burn to the touch. Make no mistake, my mouth is nuked. Everything is light pink and feels like silly putty. The sal gland under my tongue is white with a dark red outline around it. Dry mouth and thrush too. Uvulia just about gone. Blistery bumps on back of tongue. I did have one sore on the inside of my cheek during week 2. That's when I froze the honey into a loszenger so it would stay "solid" and I could keep it in place. I did it three times in two days and the sore was gone. So...I think it's working. Oh, BTW the times of thinking the honey tastes good ended 2.5 weeks ago for me and it's tasting worse and worse every day. Sometimes it makes me want to barf. I just thought I would include that little fact for you Charm so you don't think it's my dessert. Will
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | What ointment are you using for burns? When I finally got fried I used BIAFINE. Cleared it right up. There are others that also worked for other people. Aquaphor just doesn't do it. You use it AFTER each radiation treatment, not before. Ideally you should have been using something like this even before you started treatment to prevent burns.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Manuka Honey has indeed been debated here on OCF. In looking over the prior threads, it does indeed to appear to have real promise. It will be very interesting to see the results of the clinical trial on it. NIH clinical trial manuka honey Since it's a randomized placebo trial, this is a good test to see what is really what. I hope it does prove to work as well as it has for MaineWill and others. Right now all the "evidence" is just anecdotal and the plethora of sketchy websites claiming miraculous powers for it sparked my skepticism. But facts are facts and this clinical trial is the way to do it with the fake honey flavored gel as the placebo. That's a bummer MaineWill that the honey no longer tastes good Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2011 Posts: 131 Likes: 5 | Wow thanks Eileen, I just read some customer reviews of Biafine and I will be getting some at the Mass General pharm. tomorrow. Use every day after tx right? My back is a real mess but it only satrted like 4 days ago. Why didn't my dr's or nurses tell me about this. They recomended Aveno moisturizer but all the folks in the rad waiting room said it didn't help and they sure looked like it wasn't helping. I will be REALLY psyched if this helps my neck and back. Thanks again. Will Zinn
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hope it works for you Will. The one thing is you can't use it on open sores.
Yes put it on after the treatment. You want nothing on you skin when you go into radiation. Skin should be washed with Dove or Olay soap only.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2011 Posts: 131 Likes: 5 | Thanks, Can I assume thet it is alright to use when the burns are just at their freckel mark but before they become scabs and fall off? They are all VERY small (smaller than a match head) but there are a lot of them.
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Read the instructions. I think as long as it is not an open wound it is ok. I did not have burns like that. I had solid red skin like I had been in the sun too long. Was bad enough I had trouble turning my head to park the car.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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