Gail,
You don't have to agree, and we can agree to disagree, but this information is based both on fact, from some persons here who had relatively minor responses to treatment (like Danny Boy for instance) and clinical data offered by the manufacturers of IMRT equipment "Some patients actually gained weight during treatment..." (source Siemens Medical Labs). Some here drove themselves to treatment every day and continued to work. Many with postive experiences don't like to share them as to not offend or make others feel bad. If Barry got through in the 95 percentile bracket of positive experience then I really don't understand your point about challenging my statement about "all respond differently to treatment".

I had no neck burns, for instance (a mild sunburn was it), my taste buds are perfectly normal and my swallowing is normal, I can eat anything, have normal salivary function, etc. Kept all my teeth, etc. I had an advanced stage cancer and no surgery. There have been many here who have been on PEG tubes for years, have issues with trimus, swallowing, taste buds, esophogeal dilations, etc. The postings here definitely lean toward the worst case scenario and it doesn't serve the general community at large, especially the newcomers or lurkers to scare the crap out of them before they even start treatment. Our entire group here represents only .06% of just the patients in a single years time in the US.

Placebo effects are fine as long as the patient doesn't substitute unproven "cures" for known ones. There are enough pariahs out there already shamelessly taking advantage of the fear of cancer patients, with bogus (and usually expensive) so-called immune system fortifiers, antioxidents, Noni Juice, etc., etc. that have no scientific basis except for testimonials and multilayer marketing schemes.

GNC is guilty of bilking people with illegal medical claims for supplements and had many regulatory actions/fines/FDA warning letters, etc., taken against them. They are not exactly a paragon of integrity. See:

http://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=GNC

We live in a devious world. It is my personal mission to debunk and prevent that whenever possible. It is the mission of OCF to try to provide as factual information as we can. Many here are desparate or want an easier way out (who DOESN'T want an easier way out - the treatment SUCKED!). I would hate to think that my advice caused someone to delay treatment because of some unproven treatment, herb or supplement. I also try to balance out the dark and grim posts with positive facts - that's why I started the "Survivor Check-in" Topic. Newcomers can see for themselves that many of us not only survive but even prosper and are transformed in a positive way from the cancer experience. I try my very best not to make this stuff up. My whole life has been wrapped in Quality Assurance, Regulatory Affairs and Science (which is synonymous for "search for the truth")for medical products in general.

I didn't realize that aloe was used with colloidial silver but why not?!?! Another interesting site about colloidial silver and it's side effects (I am still stunned that my otherwise fabulous, head of department, MO almost made me literally turn grey with a bogus "cure" for mouth sores and radiation burns). You really can't trust anybody and that's why we promote self advocacy, second opinions, CCC's and CC's, proper and complete diagnostic workups, etc.
http://homepages.together.net/~rjstan/

It sends chills up my spine that your JH doctor and oncology nurses might actually recommend an alternative or supplemental treatment based on your testimonial when you yourself state "...no one is sure".

The "Radiacare" product I used had aloe in it. I don't have anything against aloe but some of the claims made for it cross the line. You might as well scare up a bottle of Lydia Pinkhams Elixure (of course it had opium in it at least you would get some kind of benefit) even if it didn't actually cure anything. I wasn't challenging the efficacy of it for topical application for burns.


There is a great article in this months "Cure" magazine about patient feelings and what we actually "think". I couldn't have said it better...