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by Ann Fonfa
I am the founder of the Annie Appleseed Project, an all-volunteer nonprofit online since June 1999 providing information, education and advocacy for people with cancer interested in natural therapies, lifestyle issues, complementary and alternative treatments from the patient perspective. It all started because I couldn't take chemotherapy (nor did I care to) after my own cancer diagnosis. I ended up refusing radiation – that’s a story in itself. I also did not take the hormonal therapy. But I had to do something. I found so much in the alternative world I could try that I created a website, then an organization.
Why is alternative medicine rejected by mainstream?
I wonder how many people ask their doctor about complementary/alternative (CAM) cancer therapies? The American Society for Clinical Oncology (ASCO), estimated that it was up to 80% of people with cancer. I know how few doctors know enough to tell people about it. They don't get much information themselves - ASCO holds some seminars but rarely gives out useful information. I know because I sat in on several such sessions - burning to give the lecture myself. But all I could do was ask a question now and then, mostly stuff like "why not" or "how do you know that" or my favorite "what's the evidence for that" - all asked in response to a series of don't do that, don't tell them about that"...more of same. I listened over the years to various speakers stated that 'we have proven this/that doesn’t work’. I can tell you that is NOT true. It’s all too easy to change a proven protocol (early stage study) to a new one – change the timing, the dose, the way the substance is administered - then the study item may fail to work. This has been done in several cases that I know of including IV vit C. Linus Pauling, winner of TWO Nobel prizes, became interested in vit C used as IV. The eventual study used oral vit C. Clearly and obviously it will be different.
On annieappleseedproject.org site we posted a fascinating discussion that took place at ASCO some years ago at which Dr. Charles Loprinzi declared they had 'proven’ that hydrazine sulfate (HS) didn’t work. I knew the study and had read it, I also knew there was an addendum issued. It turned out the drug (very inexpensive) was an MAO inhibitor. This means it clashes with many other drugs and common foods – and it can really be harmful if people combine them. I know because I took hydrazine sulfate as a self-test, not realizing that bananas and plain yogurt would interfere. By day 3 I simply could not get out of bed as I was harming my liver! So imagine that people with advanced cancers, not told any of this, take HS, get really ill as they either unknowingly continue to eat proscribed foods, or combine it with some pain killers or tranquilizers. Many people died as a result.
Dr. Loprinzi, who (now) KNEW this happened, had NO right to state he and his group had 'proven’ it did not work. And I had the chance to challenge him on it. He publicly stated at this ASCO meeting, in front of about 100 people, that "we didn’t know about that" (meaning he and the group of study investigators were not aware that the study drug was an MAO inhibitor – something I frankly have a hard time believing since PIs (primary investigators) generally know as much as possible before testing a substance AND there is no way that Dr. Joseph Gold who was promoting this substance, would have 'forgotten’ tell them!
Furthermore after admitting that the study could not be considered appropriate due to this missing pece of information, Dr. Loprinzi along with Andrew Vickers, PhD wrote an article for Cancer (the journal) stating the same thing – in fairness the article may have been submitted way before because it takes an amazingly LONG time to get anything into print. Later still Dr. Vickers stated the same thing at two more meetings I attended. At one he completely misstated the figures and when challenged by me (I AM an ADVOCATE), he asked me and the audience whether it wasn’t better to give those poor people with cancer, their pain killers! I was infuriated because it was clear to me they should have been given a class of drugs that would NOT interfere with MAO inhibitors! Crazy-making.
Complementary therapies can be integrated into conventional treatments
When you get diagnosed with cancer, you mostly make decisions from fear. Once the fear settles down to a manageable level, lots of people want to take a look at CAM therapies. Generally they are less toxic or not toxic at all (a really good thing when it comes to cancer patients).
I read a lot of journals, people around the world send me articles and information. When I post to our website www.annieappleseedproejct.org I am amazed by how many studies there are on natural therapies. Too many folks assume there isn't any evidence. Many studies demonstrate that a variety of natural substances can enhance the action of chemotherapy. This could be a GREAT thing if attention was paid, because less chemo would make people less sick. Those adverse effects, cleverly called 'side' effects, are NOT the desired outcome from an attempt to treat cancer. In fact the companies don't really like or support the idea of using less of their product even if it means reducing those adverse effects.
So you might think that adding a natural substance with little or no toxicity that has the ability to reduce the amount of toxic chemotherapy would be desirable. However there are several things that get in the way. 1) the PROFIT motive - very little cost for most natural products. 2) Randomized Clinical Trials - doctors have been trained to believe that if there is no RCT, it is impossible to trust the evidence. The problem with that is, who will pay for an RCT of a natural (aka unpatentable) substance. BIG Pharma will not, they have told me and others publicly and privately - "Ann, we can't patent that", and this applies even when using it in combination with their products.
In fact the companies don't really like or support the idea of using less of their product even if it means reducing those adverse effects. And there is also 3) doctors' fear of vitamins and dietary supplements. This goes back to their training by BIG Pharma. A doctor feels okay about giving any of us toxic chemotherapy, because there are "no unexpected effects". I like to say those expected ones are fairly awful and knowing about them ahead of time does NOT reduce their impact.
Additionally as I said above, there are actually many studies on vitamins, dietary supplements and other natural substances. Doctors don't have the time or energy to read up on them. Yet the Journal of the National Cancer Institute has included studies on natural substances from time to time - demonstrating their value, but changing practice takes a long time. Doctors are used to getting their information from journals but most have time to read the titles or hear about the studies via newsletters or their Pharma reps. Another easily accessible option is the website GreenMedInfo.com, which indexes the research on natural cancer treatment from the National Library of Medicine, and now contains over 2600 studies over 600 natural substances with demonstrable anti-cancer activity.
Well who is in charge you might ask? Clearly not the patients. To find out more about this type of adjunct CAM therapies, take a look at our site (go to Archives on lower right – then under the STUDIES section. We answer all questions.
Our next national conference is in San Francisco (our first West coast effort) September 14-15, 2012. Registration is open online at our website annieappleseedproject.org