Delray Beach, FL, February 16, 2006 --(PR.com
)-- March is National Nutrition Month and, as she does on every day of every month, cancer patient advocate Ann Fonfa is at her computer, adding more information about nutrition and other complementary and alternative treatments to her organization’s very popular 6-year-old website, www.annieappleseedproject.org.
A more-than-13-year breast cancer survivor herself, Ms. Fonfa spends her time providing information, education and advocacy for people with cancer. The Annie Appleseed Project -- a 501 (c)3 corporation website, which is extensive and receives just under two millions visitors a year -- offers thousands of pages on complementary and alternative (CAM) cancer therapies. “I am very proud to say that our website has become a resource for many cancer survivors, health practitioners and journalists. They tell us it provides them with useful, up-to-date information.” Nearly 6000 groups, companies and organizations link to the site.
Ms. Fonfa says that the number one question visitors to her site ask is: “Is it okay to use vitamins along with conventional cancer therapy chemo and radiation?" “Their doctors are telling them to avoid taking supplements with conventional treatments,” she says. “At the same time, many people with cancer see conventional treatments as yet another insult to their body -- first cancer, then surgery, radiation and chemotherapy -- often called ‘slash, burn and poison.’ In addition, each of these conventional cancer treatments can have debilitating and long-lasting side effects, such as nausea and chronic fatigue. And a few of the common side effects, such as lowered white blood cell counts, can also lead to more serious conditions, like an increased risk of blood clots and the need for very expensive “rescue drugs,” such as Procrit and Neupogen.
For these reasons – and more -- thousands of people with cancer are using dietary supplements and herbs, often without telling their doctors. Ms. Fonfa is not in favor of keeping this information from doctors, but she admits that too often, oncologists know very little about the topic. Cancer patients are encouraged to download information from the site to show their doctors.
Visitors to www.annieappleseedproject.org will find thousands of pages of information on combining herbs, dietary supplements, exercise, detoxification, mind-body-spirit relaxation techniques, and much more, with their conventional treatments. In addition, there are patient reports of personal experiences that can help guide others in making their own difficult decisions.
Ms. Fonfa herself credits use of alternative treatments, with conventional, for her own success as a cancer survivor. (“I and other long-term survivors, can be called 'thrivers,'” she says.) She was diagnosed with breast cancer in 1993, and with Stage IV breast cancer (the most serious kind) four years later, but has successfully fought back with a variety of approaches. Her full story is on the website, along with others from people using CAM.
Ms. Fonfa sees herself as an advocate for cancer patients. She attends many professional cancer meetings throughout the country, where she introduces controversial topics that oncologists might otherwise not hear. “It is crucial that oncologists, and others in the field of cancer treatment and research, hear the patient’s perspective on using complementary therapies.”
Though there is solid science -- animal studies and lots of studies done in cell culture (in vitro) -- the large-scale trials needed to persuade oncologists of the value of complementary therapies with chemotherapy and radiation have unfortunately yet to be done. Why is this? “In large part, it’s because there’s no money to be made by conducting large-scale trials on substances that cannot be patented. And natural substances, such as vitamins and herbs, cannot be patented.”
Still, she says, “People with cancer are not waiting around for large-scale trials. “Between 60-80% of them are using some form of CAM right now. This is the figure given by the American Society for Clinical Oncology (ASCO). I wouldn't be surprised if, in reality, it were higher.”
Since her own cancer diagnosis in 1993, Ms. Fonfa has testified before Congress and at Food & Drug Administration hearings, and has spoken at various National Cancer Institute and research meetings. She constantly calls for randomized clinical studies to be conducted on alternative and complementary treatments that are of strong interest to patients.
Ms. Fonfa believes that "it is important for cancer patients and their healthcare practitioners to be on the same page, and that making an informed decision is better for everyone." She feels strongly that this can only happen when enough information is made available to both. www.annieappleseedproject.org provides the best of existing information in a user-friendly format.