| Joined: Jan 2009 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2009 Posts: 33 | I'm new to the "in treatment" boards. I posted to the newbies forum about a year ago, and then the recurrence forum back in October, but it's time to swing around to this area.
The topic I want to bring up is this honey diet I'm on. My RO recommends me swishing and swallowing 2 TBS of honey 15 minutes before treatment, 15 minutes after treatment, and right before bed. He says that in his research he has been able to prevent people from needing a feeding tube 9 times out of 10 by using the honey method.
This is all great, except I decided to continue the honey while nauseated from chemo last week and I now puke every time I even smell the stuff. We've been trying methods of diluting the honey, only swishing it, etc. to try to fix that issue and I'm making progress.
What I'd like to know, though, is if anyone else has had any experiences with using honey during treatment and how that's been.
Thanks!
9.29.08: Dx @ 24 w/ T2 SCC, tongue 10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad. 10.06.09: Recurrence in l. lymphnode 11.16.09: L. neck dissection + lost nerve XII 12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG) 02.15.10: Done with treatment!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I don't remember ever seeing someone post about that before but just my personal opinion I don't see how that little bit of added calories per day can do anything but give you a little bit of extra calories a day and certainly could not prevent the necessity of a feeding tube where one's goal is 2000 to 3000 calories every day. I also have never heard of any study like he mentioned but would certainly want to read it if he can provide a link.
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.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | David, Are you trying for the knucklehead award again? The doctor wasn't suggesting that the honey was going to give them enough calories for the day to avoid the peg. He was saying that it helps prevent the sores in the mouth that make it almost impossible for people to eat and thus might help them not need the peg.
And YES, other people on the board have used manuka honey and did NOT get the horrible mouth sores that many get. GAILMACs husband who was treated at Johns Hopkins I believe by Dr. Gillison was one who comes to mind. He had about the easiest time of any one I can remember on this board. Whether it was the honey or not, I do not know. They also used some other things which I don't remember at the moment that helped with his dry mouth. Try a search on 'Manuka' and you can probably find the strings.
Sorry to hear the honey is nauseating you. Maybe try a differnt flavor? Some people have used it quite successfully.
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 2009 Posts: 109 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 109 | A friend of mine found a honey article somewhere. I detest honey. But I did exactly as you said - 15 min before , 15 min after, and 6 hours after. I hated every minute of it, but I did it faithfully. Obviously, I don't know what things would look like had I not submitted myself to honey torture, but according to the doctors my mouth sores were not horrible. I still was in a lot of pain though and had consumed ungodly amount of painkillers. By the very end though, honey stung. But that was maybe the very last week.
But I'm with David - it doesn't makes things worse, and it may make things better, so why not.
Hopefully, it will make things a little less horrible for you too.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Eileen,
It's my "season" to not be able to concentrate on non tax matters. Guess I read her post to quickly! lol
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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 |
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Re: David ...I am telling you guys, the man has brain freeze. It has stayed cold here in Florida way longer than usual..warmed a bit today, but due to get below freezing again over the weekend. Cold and tax season = knuckleheadness!
So, until spring expect really weird posts from the CPA man.
Hugs and kisses, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Sometimes you can tell a book by its cover. If you skipped over the subject line of this post, you would not know how the honey was used from the text. I wish I had found OCF the first time around as my mouth sores were horrendous even though I still avoided the PEG. Becoming nauseous over food that you used during the chemo nausea is quite common. I was warned that it is a human version of a Pavlovian response by the chemo nurse who did a pre chemo FAQ session. Unfortunately she did not say how to overcome it 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: Jan 2009 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2009 Posts: 33 | Wow! I guess I started a good topic here. I'm still working, so by the time I got home from treatment #8, ate dinner (mmmm... nothing like bland metallic food), and updated my blog for the day, I finally got a chance to read all the responses. I can't find the specific research my RO is doing (it is possible it is still in the process of being published), but I ran a pubmed search on "honey oral cancer" and found this. I found a way today to take it by putting it in the front of my mouth, then swishing/swallowing it with a swig of water. I didn't gag, so success. Hopefully I can try to take smaller and smaller swigs of water until I don't need it. So far, no mouth sores, no sore throat and I'm feeling pretty good. The only major complaints so far are the nausea/fatigue and loss/change of taste. Three other things I'm doing to prevent mouth sores: 1. 5mg Salagen (pilocarpine) 3x a day 2. Shots of Ethyol (amifostine) before ever treatment 3. Gelclair swish - supposedly 3 times a day but it's RIDICULOUSLY EXPENSIVE, so so far I'm just doing one a day My RO is throwing every possible known study to prevent mouth sores at me. I'm only 25 and when I started crying when I asked him what this was going to do for my quality of life he took out his prescription pad and wrote down all of that. Hopefully the honey treatment idea can be beneficial to lots of other folks out there in treatment now too. 
9.29.08: Dx @ 24 w/ T2 SCC, tongue 10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad. 10.06.09: Recurrence in l. lymphnode 11.16.09: L. neck dissection + lost nerve XII 12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG) 02.15.10: Done with treatment!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Honey has been used for it's healing properties in some cultures forever. It's has both antibiotic and antiseptic properties to it that promote healing. It's also the only food that doesn't spoil.
I don't think that it's a cure all, but hopefully it helps.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Cool! Wish I'd known about this during treatment. Good luck with everything. Routing for you! Hang tough. Kate
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | We had Steve use manuka honey in the beginning of his treatment. Had all intentions of following the swish in the mouth before and after treatment too. Got through a few days and then he landed in hospital with his dreaded Peg infection. Never touched the honey again after that.
There's another lady on here whose husband used manuka honey as well. He also got through treatment pretty good. Her name is Gail Mac. I just sent her a PM and she was a great help with suggestions for things they found to work well and things that didn't work well.
Best of luck with the honey. We had alot of hope for it and I'd read great things about it.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | To all you David bashers...In addition to my normal hectic season which not only brings the tax people but the restaurant season people I am running for a seat on City Council which has it's election March 9 so I am also in the throws of campaigning. I only agreed to run at the insistance of the Mayor and another Council member and now find myself with 4 other candidates running for one seat. I am not a politician and I don't want to be one as I only want to help the City in these challenging economic times but if I want to win I have to spend a great deal of time in the next 2 months running my race. I wish I had never agreed to do this right now!!
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.
| | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | For what its worth David.....I'm one of your biggest fans! My Dad was a CPA so I can understand what "tax season" really means....very stressful. And that was back in the day when ledgers and adding machines were used. No such thing as a computer. Best of luck with your campaign!
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | You of all people can handle the council job David. You seem to fit right in and I would bet on you. I wish I had you when I was Mayor of my town on my council.. I did get the town a lot it needed abd am a charter member and founding memember of our County Mayors Association. Man that was along time ago. Good for your memory in later years too David.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | Wish we lived closer so we could vote for you, David....or not....if that's the way you are leaning 
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | You can always move (quickly) and our real estate is really cheap now!!
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.
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | good luck david!! with everything lol!
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
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