| | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | My wholistic doc has me on Ubiquinol CoQH, Raspex (rasberry seed extract), Mycotaki, and vits D and buffered C. Does anyone have any experience with these. My Radiation Dr. says take them all I want UNTIL I start radiation. I feel a slight burning in mouth and eyes. Any feedback would be great. Thanks. 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: 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 | Whoa - my reply disappeared!! I said if it burns or hurts stop taking it - and perhaps call the holistic guy... Best of 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
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Good luck with your upcoming treatment, Will. I have no experience with any of those supplements but must admit I'm skeptical. Guess I'm an old fashioned M.D. type of guy when it comes to my health.
Keep us posted on your RT etc. and I'll keep the good thoughts flowing your way.
david2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Agree with CherylD,, I was in a raspberry study at Ohio State Cancer Center. The only thing I can say for sure is that the raspberries were delicious. My best to you thru all of this. You could get to the point after treatments when everything will burn and especially your tongue.
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 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | MaineWill
I am not aware of any studies showing that these supplements will rid your body of the HPV16 virus that caused your cancer.
For certain you do not want to take a lot of supplements during your radiation treatments because excessive levels of some have been shown to degrade the effectiveness. I was told nothing more than a daily Centrum multivitamin.
I would recommend a good balanced diet and, if you are around a normal weight, then some extra calories to bulk up a bit before starting your radiation treatments.
Try to maintain a reasonable weight and stay well hydrated during your radiation treatments.
A recent article I read said most treatment centers still do not have ART (Adaptive Radiotherapy) capable systems and many do not take inter-fractional re-planning CT's. It showed scans of how far off the original pre-treament RT planning was in some patients due to anatomical changes after about a 15% weight loss.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 72 | Chocolate has been shown to fight HPV, so I recommend fattening up pre-rads with Ghiradelli's raspberry filled dark chocolate squares. You can buy them over the counter at CVS or Walgreens 
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | While the original plant that chocolate is derived from has over 4000 different alkaloids in it, some of which are likely useful in combatting a variety of health issues when used in very concentrated applications of them, in some yet to be developed combinations -eating chocolate to get rid of a developed oncogenic HPV seems like a fun, but I think likely a less than useful approach to prepping for going into treatment. I think that anything that you holistic doctor tells you needs to be passed by your treatment team before you decide to jump on using it. Many innocuous things actually interfere with cancer treatments including some very common vitamins.
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.
| | | | | 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 | dang... can i still have chocolate... even if I don't have HPV? Just joking... heavy sigh I'm kinda allergic to chocolate anyway.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Isn't chocolate in one of the major food groups and should be included in our daily diet? At least that is my philosophy! 
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | 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 | Mine too - however over 70 dark chocolate - is said to help fight cancer... Seriously - read it in a book written by a two time brain cancer survivor and a neuroscientist... Fascinating...
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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