pad

Ann's Talk to WHCCAM

I am Ann Fonfa, founder of The Annie Appleseed Project set up to help inform, educate and advocate for cancer patients and concerned others. Our special area of focus is complementary/alternative, natural therapies.

Since studies show that up to 87% of patients are interested in this area, and that they rarely discuss issues with their healthcare providers, The Project works to bridge this information gap providing a website with lots of downloadable information, including patient perspectives at all times.

Today I would like to talk about the need for a new research direction-often called paradigm shift. I would urge this panel to use its powers to help create this shift. I sometimes refer to it as the Patient Track.

Presenters at the last three annual conferences of the American Association for Cancer Researchers proudly offered very positive studies of green tea. Yet no cancer patient I know would take green tea alone. We ALL combine elements and the study of natural, nontoxic combinations is part of the Patient Track. Looking at what we do NOW would yield information of the highest quality and usefulness.

Studies done on the Patient Track would look at combinations of therapies, such as antioxidants with chemotherapy or radiation. It would examine the use of herbs in combination, and with dietary supplements. Many of us juice daily and do detoxification routines as well as mind/body medicine. Patients’ real life regimens should be studied under conditions approximating their use in our real world.

A study of patient use of CoQ10 along with anthracycline-based chemotherapy regimens might be included for possible reduction of cardiotoxicity, or the use of taxanes and alpha-lipoic acid for possible prevention of neuropathy.

Pharmaceutical companies might have much to gain from such studies. If it could be shown that the use of dietary supplements might enhance conventional therapy, this would benefit many of the stakeholders.

As a cancer patient myself, I know the frustrations of having to make treatment decisions with little or no evidence of efficacy. Yet in the 9 years since I have been using natural therapies, I have successfully achieved tumor reduction with three different regimens. And if I can do it, so can other needy patients.

I consider myself a highly educated patient, having attended literally ninety to a hundred conferences, meetings and events. I read journals, newsletters, books and articles. I have met health practitioners of every persuasion. Many are open to new ideas. Some say they oppose alternative medicine-a statement that clearly indicates ideology and not science. At the same time, patients are asking questions of their providers and it is important to get answers.

And still 9 years later I have to make treatment decisions by my GUT. At just about every meeting I have attended, I rise to ask when will we have answers on various natural regimens. The response has always been "We have no studies on that" or "That hasn’t been studied yet". If I had waited for the studies, it would now be 9 years later with NO answers. And maybe I would not be here for them anyway.

We patients cannot afford to wait. We need answers now so that we do not have to waste our money and our time-our precious time, on the wrong things. The Annie Appleseed Project offers information on alternative therapies as possibilities. We believe if they have worked for someone, they may work for someone else. As in the conventional therapies world, not all things work for everyone. We are forced to pick and choose among many options, most of which have not been studied in humans. Certainly almost none at the highest level of evidence as required by FDA-randomized, multi-center, double-masked studies.

I heard it said in reports of clinical trials, that there were NO unexpected effects. Just because they were expected does not excuse the highly toxic and painful effects of conventional cytotoxic drugs. Just because we call them "side effects" does not reduce their damage, often permanent. Great marketing idea calling them "side" effects although they are not aside of anything. Often larger numbers of patients experience the unwanted effect than the desired one.

When discussing dietary supplements, one complaint is that we do not know the effects. At FDA meetings I hear lots of references to safety. Considering that cancer patients are routinely given highly toxic medicines, this concern for safety in the alternative use of dietary supplements and nutrition, seems VERY overstated. Thinking about this seriously, knowing as I do that vitamin overdoses can be reversed without permanent damage, unlike cytotoxic drugs, I often wonder when did we fall down the rabbit hole?

In conclusion, I urge this commission to take the Patient Track. Work for and sponsor studies that will yield immediately useful information for patients and their caregivers, healthcare practitioners and ultimately our society.

Remember we are NOT Doctors and have NO medical training.

This site is like an Encylopedia - there are many pages, many links on many topics.

Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.