Ann's NOTE: I put in corrected information where needed (usually within parens). Even the very best journalists make mistakes.
A Cancer Patient's Best Friend
(Nov/Dec 2004 article from Alternative Medicine magazine)
Getting
a cancer diagnosis plunges you into a strange and frightening new
world. What to do first? Which therapies to try? Happily, Ann Fonfa has
been there and is ready to guide you through the possibilities.
By Peter Jaret
For
more than a decade, she's been a familiar figure at cancer research
conferences around the country--a small woman with wavy brown hair who
might seem unremarkable except for the fierce intelligence of her gaze.
There
she is, sitting a few rows from the front, scrupulously taking notes.
When the time comes for questions, she's the first on her feet.
She
speaks with a no-nonsense New York accent, asking the kinds of
questions laypeople often have but don't get the opportunity to ask.
Does that new approach work for everyone? Are there any unwanted side
effects? What about people who are also using Chinese herbs? Or
vitamins?
Will the new therapy be safe for them, more effective, less effective? Has anyone looked into that? And if not, why not?
Her
name is Ann Fonfa, although she's better known as Annie Appleseed to
the hundreds of thousands of people who visit her website, the Annie
Appleseed Project (annieappleseedproject.org). (Now a non profit
501(c)3 corporation accepting donations)
She chose the name
because, like Johnny Appleseed, she's on a mission to plant seeds--seeds
of information that might offer hope to people with cancer. The
site--"alternative and complementary medicine from a patient's
perspective"--was launched in 1999 and has become one of the liveliest
and most comprehensive Internet resources on unconventional options for
cancer patients.
Today it receives almost 50,000 visits a month.
(Ann's NOTE: as of the beginning 11/04 by the time the article was
published, we were up to 65, 000 and on 11/24/04 we receive 71,000+
monhtly visitors!)
Fonfa describes herself as "a woman with
breast cancer--and an attitude." Attitude is right. She's sharp-witted,
disarmingly candid, easygoing, and friendly--and a ferocious advocate
for people with cancer. She attends as many conferences as she can,
often paying her own way, to gather information and post it on her
website in sharp and incisive summaries.
"Ann goes to many
meetings that others would find difficult even to comprehend. And she's
unafraid to ask the really tough questions," says Ralph W. Moss, an
authority on alternative cancer therapies and author of Cancer Therapy
and Questioning Chemotherapy, among other books. "I love watching the
faces of scientists at these meetings as they realize they're facing an
expert patient who cannot be cowed by authority or technical jargon."
Fonfa's
tenacity grew out of her own treatment odyssey, which began when she
was diagnosed in 1993 at the age of 44. "I was like most people who
learn they have cancer.
I didn't know the first thing about it,"
she says. "My doctor recommended surgery, and I said okay. The surgeon
had an opening on Monday, and I said okay.
"It wasn't until after
the operation, when my surgeon recommended radiation, that I began to
realize I didn't have to do exactly what he said. I'd done a little
reading by this time, and I'd discovered that a big study (NSABP B06)
had just shown that radiation didn't make any difference in survival for
stage I breast cancer like mine. So I decided not to do it.
"I
was also wary when my oncologist recommended chemotherapy. I had an
uncle who'd had chemo, and it made him miserable and didn't seem to do
him much good. I was very chemically sensitive, so I thought maybe we
could at least adjust the dose or something, but when I mentioned that
to my oncologist, he didn't seem interested in my concerns. All he said
was, 'Oh, that won't make any difference.' I realized I could have been
anyone in room seven; they would have done chemo the same way."
That's
when Fonfa began looking into alternatives, but she hit the same brick
wall many cancer patients encounter. "There was no Internet back then,
and it was hard to get information. I remember prowling used bookstores
looking for anything I could get my hands on. I joined a support group
for women with breast cancer, (and then started one for those interested
in CAM with which) we invited experts to talk to us about things like
acupuncture, Chinese herbs, and other approaches."
Eventually she
began to travel to scientific meetings--"anywhere people were talking
about alternatives"--and her stack of research grew.
Doing her
best to sort through it all, she ended up trying a hodgepodge of things:
She traveled with a group of women to Canada to take the experimental
drug 714X. She went to Mexico to the Gerson clinic, which offers a
therapy based on radical dietary changes and coffee enemas. She did
herbal supplements, Chinese mushrooms, acupuncture, and high doses of
vitamin A. And for years the tumors on her chest wall continued to
recur.
Then, in 2001, she received the kind of news cancer
patients dream of. An MRI of her chest wall found no trace of cancer.
"The technician who was reading the scan actually asked me why I'd come
in for the test," Fonfa says. "I had to explain that I had breast
cancer. I remember her saying, 'Really?'"
It was the first time in eight years that there was no sign of the disease. And three years later, Fonfa is still cancer-free.
Many
people given a clean bill of health might decide to forget about cancer
and go on with their lives. Not Fonfa. If anything, she has become even
more dedicated to the cause.
Nine years ago, she quit her job as
sales rep for a company that produced business presentations, and now,
from an office in Delray Beach, Florida, and with the financial support
of her husband, she works full-time on this project.
"I'm
convinced that some of the alternative approaches I used helped save my
life," she says. "But it's still hard for most people to get good
information on which ones to try." These days there's a lot more out
there--on the web, in books and magazines, and from organizations like
the NCI Office of Cancer Complementary and Alternative Medicine (see
"Searching for Answers"). "But the quality of the information is all
over the place," Fonfa says, so knowing which approaches work and are
right for any particular type and stage of cancer presents a real
challenge.
That's where Fonfa comes in. "If I can point people
toward an approach that helps them, that's a pretty special thing to be
able to do," she says. Alternative Medicine recently caught up with
Fonfa at a conference to talk about how, exactly, she goes about
fulfilling that generous mission.
Q: "Integrative care" is the
new buzzword in cancer treatment. Is it getting easier for patients to
combine conventional and alternative medicine?
A: There's a lot
of talk lately about integrative medicine. Unfortunately, a lot of it's
just that, talk. There's still a wide gap between the worlds of
conventional and alternative medicine, and patients often find
themselves trapped in between. If you ask your oncologist about Chinese
mushrooms, you're not going to get very far. And alternative
practitioners often don't know the first thing about conventional
approaches.
Consider the example of antioxidant vitamins. Many
cancer patients wonder if they should be taking them. Conventional
doctors will tell you that you shouldn't if you're on chemotherapy
because they may actually strengthen cancer cells. Alternative
practitioners will tell you to take the antioxidants and forget the
chemo. That's how far apart these folks are. Most of the time there
simply isn't any data to help you decide. The researchers say, "We
haven't done the studies yet." That's when the advocate in me jumps up
and down. I understand yet. But what are they doing now?
Q: Where's the best place to turn for information?
A:
Well, of course I have to plug my own website. From the start, my idea
was to include something about almost any approach that cancer patients
were likely to hear about. If something has been tested, we include
research findings. But in some cases, with something very new, all we
can do is list a clinic or a practitioner who offers it. We invite
people to share their own experiences, so we include a lot of anecdotal
evidence, too.
There are other good and useful sources of
information on the Internet, of course. (See "Searching for Answers").
And I'd recommend any books on cancer by physican Joseph Pizzorno,
naturopath Michael Murray, and herbalist James Duke.
Q: What advice can you offer on how to evaluate claims for alternative approaches?
A:
I start by asking whether something has been studied in any kind of
clinical trial, and what the results are. The best place to look for
that kind of information is PubMed (pubmed.gov), a vast database of
published medical findings that's quite easy to search.
If an
approach hasn't already been tested in clinical trials, you can look to
see if it's currently being tested or considered for one. That tells you
that researchers think it's worthwhile enough to study. (See "Promising
Cancer Treatments")
Unfortunately, very few alternative
treatments are being studied in clinical trials, so the next step is to
ask if a particular approach seems to make sense to you. I think there's
good reason to believe that antioxidant vitamin therapy might be
effective, for instance, because there's strong evidence that oxidation
damages cells, weakens the immune system, and can even cause mutations
that lead to cancer. So even if there aren't any definitive studies, the
idea behind it is logical.
Another question to ask is who's
making the claims. You have to be wary if it's someone who's selling a
particular supplement or whatever--especially if it's a proprietary
formula that's top secret. You can be much more confident with a
practitioner who has studied an approach, has had good experience with
other patients, and is open and willing to share all of his or her
findings.
Q: Any tips on how to evaluate anecdotal evidence in cases where that's all there is to go on?
A:
It's not easy. While I was at the Gerson clinic, for instance, one of
my fellow patients died, but another improved dramatically. She had had
tumors in her body that went away almost completely. Her legs had been
affected, and within a week she was taking walks with her husband, which
she hadn't been able to do for years. So which anecdote do you choose?
First,
consider the source. Is it from someone you know and trust? Do they
have the same kind of cancer you have? The same stage? Are they in the
same overall health? In my own case, I was healthier than most of the
people at the clinic, so I focused on how the approach seemed to be
working for people more like me, whose cancer wasn't very advanced.
Of
course, most conventional researchers dismiss anecdotal evidence
entirely, although even mainstream medicine does use case studies. I
think anecdotal evidence definitely has value. If you have a lot of
people saying that something like acupuncture or Chinese mushrooms seems
to help them, then that's the beginning of real evidence that something
might work, that it's worth testing in some kind of clinical study to
find out.
Q: What about cancer clinics that offer their own unique therapies? How do you evaluate the claims they make?
A:
Again, it's important to ask whether the approach makes sense. Find out
exactly what it includes. Some clinics will let you decide which parts
of their approach you can follow, but others, especially some of the
clinics in Germany, are very strict about what you can and can't do.
I
invite people to describe their clinic experiences on our website, and
it can be very helpful to read their descriptions to find out exactly
what you're going to be in for--what the regimen consists of, how long
you'll be there, and what it will cost (treatment is usually very
expensive).
One of my entries, about the Gerson clinic, will tell
you exactly how demanding that program can be. Here's what it says.
"You are given a series of pills to take daily, starting at 8 a.m. with
breakfast. These include pancreatic, niacin, thyroid and acidol/pepsin.
At 10 a.m. you take thyroid medicine. At 11 a.m. you take liver pills.
At 1 p.m., lunch and the same group of pills as at breakfast. At 3 p.m.
and 4 p.m., liver pills again (with carrot juice). At 5 p.m.,
pancreatic, thyroid, niacin. At 6 p.m., niacin and at 7 p.m., dinner and
the same pills as at breakfast and lunch. The niacin is dissolved under
the tongue each time to reduce or prevent flush. There are 13
fresh-squeezed juices to drink every day." (and four-five coffee
enemas).
That kind of information can be very useful to someone
thinking, "Should I try this?" But keep in mind that most alternative
clinics don't do research on their methods and don't do follow-up on the
patients they treat, so they have virtually no idea whether their
approach is actually helping anyone.
And if you don't respond to
their particular regimen, they have nothing else to offer--unlike major
university-based cancer centers, which now provide a range of
treatments, albeit all mainstream. I still see an expert in Chinese
herbs who is on staff at a major cancer center in New York City.
Q: Why don't we have better information?
A:
I blame people on both sides. Many mainstream doctors are still
completely unsympathetic and even hostile to alternative approaches--but
alternative practitioners are also at fault. A lot of them haven't been
interested in testing their approaches at all.
Of course,
testing cancer treatments isn't easy. It takes time and lots of money,
and some approaches, like Chinese medicine, are difficult to test
because they're so individualized. Fortunately, more and more
alternative approaches are beginning to be tested, but it's slow. The
only way to speed up the process is for cancer patients to demand more
studies.
Q: In the end, what alternative treatments do you think worked for you?
A:
That's the $64,000 question, isn't it? I remember my mother used to say
to me, "Ann, why don't you do what works?" If only it were that easy!
First,
let me say that I don't use the words "therapy" or "treatment" to
describe alternative approaches. I prefer to call them "possibilities."
Because that's really all we know about many of them. It's possible they
might help.
In my own experience I've come to believe that there
are many possibilities out there that help some people some of the
time. But the truth is, I have no way of knowing (exactly) what worked
for me. I think vitamin A was helpful. I like Chinese herbs and I still
take them (new tumors stopped developing and old ones regressed with the
herbs!). I think detoxification, things like coffee enemas, are useful.
I think diet and exercise are important. (A combination approach is
probably best - mind-body, exercise, detoxification, dietary supplements
and good nutrition).
Who knows? All of these things may have
worked together for me, but it really is impossible to know. And what
worked for me won't necessarily work for other people. I'm a research
study of one, and any scientist will tell you that's not statistically
significant.
Still, I'm convinced that some of the alternative
approaches I tried helped save my life. The real point about alternative
treatments is that they provide options for people with cancer. They
offer hope. And that in itself can be pretty powerful medicine.
Peter Jaret is a contributing writer who lives in Petaluma, Calif.
Searching for Answers
The
Internet has made more up-to-date information about cancer available
than ever before. Unfortunately, not everything you find online is true
or reliable. Where to go to get the straight story? We've prowled the
web to come up with a dozen sites that provide good places to begin your
search.
Annie Appleseed Project
annieappleseedproject.org
A clearinghouse for information and useful links--includes smart and
lively summaries of scientific conferences on alternative and
complementary approaches to treating cancer.
Association of Cancer Online Resources
acor.org
Offers information about treatment options, links for online support groups, and lists of clinical trials.
Breast Cancer Action
bcaction.org
Provides
free access to the group's newsletter, as well as a comprehensive
series of frequently asked questions about breast cancer. Annual
membership fee of $50 for full access to the site. (much on
environmental issues)
Cancer Links
cancerlinks.com
A comprehensive list of online resources with easy-to-use links.
Includes a section devoted to alternative, complementary, and
integrative medicine.
Cancer Research Portfolio
researchportfolio.cancer.gov
Maintained
by the National Cancer Institute, this site includes lists of research
projects divided by type of cancer and type of cancer research
(treatment, prevention, early diagnosis).
European Cancer Patient Coalition
epc.online.org
A
good introduction to treatments and therapies available in western
Europe. Click on "helpful information" for a comprehensive list of
European-based clinics, Internet sites, and patient support groups.
PubMed
pubmed.gov
A
database that includes more than 15 million citations for biomedical
articles, including results of published clinical trials, dating back to
the 1950s.
M.D. Anderson Complementary & Alternative Medicine
mdanderson.org/departments/cimer
One
of the country's largest treatment centers, M.D. Anderson has been a
pioneer among integrative cancer programs. The site includes a wide
range of useful and frequently updated information.
National Cancer Institute
nci.nih.gov
The
flagship of federally funded cancer research, this site offers
authoritative information about conventional cancer diagnosis and
treatment.
National Center for Complementary and Alternative Medicine
nccam.nih.gov
Part
of the National Institutes of Health, the NCCAM site includes a useful
alphabetical listing of information about treatments and therapies.
Office of Cancer Complementary & Alternative Medicine
cancer.gov/occam
Established
in 1998, OCCAM coordinates complementary and alternative medicine
research at the National Cancer Institute. Site includes best case
studies of unconventional treatments.
Savvy Patients
savvypatients.com
Useful information about conventional and alternative options, with a focus on patient activism.
--P.J.
Promising Cancer Treatments
A
growing number of alternative approaches to cancer are being put to the
test at research centers around the country. Although such studies
don't mean that the treatments work, they do suggest there's enough
promise in preliminary evidence to justify further investigation. For a
list of proposed and ongoing clinical trials, check out the National
Center for Complementary and Alternative Medicine (nccam.nih.gov) and
the Office of Cancer Complementary & Alternative Medicine
(cancer.gov/occam).
Here's a sampling of trials that are currently recruiting patients or already under way.
Ginseng and GinkgoExperts
at the National Center for Complementary and Alternative Medicine
(NCCAM) are investigating how these two popular herbal substances affect
cancer drugs and whether they can boost natural enzymes in the body
that help fight cancer.
Healing TouchResearchers at the
University of Iowa in Iowa City plan to study whether biofields created
by healing touch can enhance the immune system's ability to destroy
tumor cells.
Macrobiotic DietsColumbia University
researchers are currently enrolling patients in a study to test whether
diets rich in phytoestrogens change biochemistry in ways that might
favor cancer-fighting hormones and enzymes.
Mistletoe ExtractWidely
used in Europe for more than 80 years, mistletoe extract is being
tested as a potential cancer-fighting agent by researchers at NCCAM.
Shark CartilageA
consortium of cancer centers in ten states is testing whether shark
cartilage could help slow the growth of breast and colorectal cancer.
Distant HealingCan
prayer make people well? To test the possibility, researchers at NCCAM
are using experienced healers to transmit "mental intention for health
and well-being" to patients around the country with glioblastomas (brain
tumors).
SeleniumThe National Cancer Institute, along
with several other leading cancer research centers, is currently
recruiting subjects for a study to test whether the mineral selenium can
help prevent prostate cancer.
Massage TherapyResearchers
at the University of California, San Francisco plan to test whether
Swedish massage therapy can reduce fatigue in patients undergoing
conventional cancer treatments.
Diet and Pancreatic CancerPatients
are being recruited for a Columbia University study that will test
whether a complex dietary regimen including pancreatic enzymes and
coffee enemas can help slow the growth of cancer. (Kelley/Gonzalez
Method)
Diet and Prostate CancerCan a diet rich in fruits
and vegetables, green tea, and vitamin E lower prostate specific
antigen (PSA) levels and help prostate cancer patients survive longer? A
study at Memorial Sloan-Kettering Cancer Center is under way to find
answers.
--P.J.
Written by Peter Jaret after telephone, email and in person discussions with Ann Fonfa
Published in Alternative Medicine magazine, Nov/Dec 2004 issue
