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
Whoa - my reply disappeared!! I said if it burns or hurts stop taking it - and perhaps call the holistic guy... Best of luck!!
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
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.
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.
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
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.
dang... can i still have chocolate... even if I don't have HPV?
Just joking... heavy sigh I'm kinda allergic to chocolate anyway.
Isn't chocolate in one of the major food groups and should be included in our daily diet? At least that is my philosophy!
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...
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.
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.
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
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
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
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
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
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.
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
Thanks Eileen, I got it today and just applied it. My Ro's NP said that it is no different from the Aveeno moisturizer they recomended but I don't know how much confidence I have in that. From what I read on Amazon from customer comments folks LOVE this stuff. So thanks for telling me about it and I will let you know how it's working for me. I feel like I'm doing very well. This is the middle of my 5th week and still no mouth sores and no PEG. The only thing that sucks about eating is the taste (not the pain) and I'm wanting to excersize my throat muscles anyway.
I don't like Aveeno just for general use. I think I bought it for itching. Wound up giving it away. I can't imagine it being just as good as Biafine.
I only remember 3 people on this board that used manuka honey and none of them got mouth sores. However, not eveyone winds up with mouth sores. I had none and didn't even know about the honey.
You seem to be doing well. Hope that continues. By this point everything tasted like cardboard. I think I could still taste coffee and lived on coffee or butter pecan Ensure Plus. I didn't have chemo so didn't have those side effects to deal with.
The end is in sight. Keep your spirits up and let us know how the Biafine works.
Take care,
Eileen