Comments: New Cancer Drug Approved, But Does It Prolong Life?
As
the founder of The Annie Appleseed Project I have often noted that we
patients/advocates continue to accept drugs that generally fail to offer
much in the way of lifesaving benefits - extension of life (with poor
quality), usually a few months or less. we will always get offered that
type as long as we acquiesce.
The NY Times article clearly states that this occurs with horrible frequency.
"Among
those that gained approval in the last 20 years, fewer than one in five
have been shown to extend lives, life extensions usually measured in
weeks or months, not years".
It has been profitable to create,
sell, market, drugs that are very expensive, highly toxic but not very
useful. Yes, they help a few, but the cost is high. I think the cost is
that we do not have BETTER, LESS EXPENSIVE drugs - but that may just be
me.
If it is about health, then WE need to ask for less toxicity.
I believe one method to achieve that is to include, involved and test,
natural products more fully. Our site has many pages of animal research
on the value of some nutrients, dietary supplements, herbs. It is TIME
to really take a look at this valuable resource area.
If we can accept the level of toxicity that chemotherapy brings - how fearful can we be about vitamins and natural nutrient?
Ann F.
www.annieappleseedproject.org
Wednesday, August 26, 2015
Ann Fonfa responds to "When Doctors are Patients..."
Letters
A Reader and Author Respond to "When Doctors Are Patients: Is There Such a Thing as 'Posttraumatic Bliss'?"
Ann Fonfa; Roger J. Bulger, MD
Medscape J Med. 2008;10(8):187. ©2008 Medscape Posted 08/11/2008
To the Editor:
Dr. Bulger found an unusual way of stating the circumstances of our lives, but it works.[1]
As a 15-year "survivor" and a patient advocate whose philosophy is presented on www.annieappleseedproject.org, I have long suggested that how we deal with every day is the meaning of our lives. We have an opportunity each day to deal with "dying from cancer" or "living with cancer."
I chose to live, by enjoying each and every day. I know many like-minded people. We will all die at some point, but it is how we live that really matters. This is not new of course.
Ann Fonfa Founder and Volunteer President The Annie Appleseed Project www.annieappleseedproject.org
Reference:
1. Bulger RJ. When doctors are patients: Is there such a thing as "posttraumatic bliss"? Medscape J Med. 2008;10:146. Available at: http://www.medscape.com/viewarticle/576257 Accessed July 30, 2008.
Author's Reply:
I couldn't agree more with Ms Fonfa and many others who expressed similar views in response to my editorial.[1]
One respondent, a nurse, reported that 20 years ago, while holding her first baby, she imagined what her life might be like if that baby were to die at a very young age, and that from that moment, her life and perspective changed and has remained so, in a manner entirely consistent with Ms Fonfa's and mine.
That it took a bout with a fatal disease to shake me into a better perspective is one thing, but the other is to be able now to offer some counsel to others depressed by a diagnosis of a life-shortening disease. I congratulate Annie Appleseed for doing something about it.
Roger J. Bulger, MD President (retired) Association of Academic Health Centers Washington, DC rbulger@comcast.net
Reference:
1. Bulger RJ. When doctors are patients: Is there such a thing as "posttraumatic bliss"? Medscape J Med. 2008;10:146. Available at: http://www.medscape.com/viewarticle/576257 Accessed July 30, 2008.
A Reader and Author Respond to "When Doctors Are Patients: Is There Such a Thing as 'Posttraumatic Bliss'?"
Ann Fonfa; Roger J. Bulger, MD
Medscape J Med. 2008;10(8):187. ©2008 Medscape Posted 08/11/2008
To the Editor:
Dr. Bulger found an unusual way of stating the circumstances of our lives, but it works.[1]
As a 15-year "survivor" and a patient advocate whose philosophy is presented on www.annieappleseedproject.org, I have long suggested that how we deal with every day is the meaning of our lives. We have an opportunity each day to deal with "dying from cancer" or "living with cancer."
I chose to live, by enjoying each and every day. I know many like-minded people. We will all die at some point, but it is how we live that really matters. This is not new of course.
Ann Fonfa Founder and Volunteer President The Annie Appleseed Project www.annieappleseedproject.org
Reference:
1. Bulger RJ. When doctors are patients: Is there such a thing as "posttraumatic bliss"? Medscape J Med. 2008;10:146. Available at: http://www.medscape.com/viewarticle/576257 Accessed July 30, 2008.
Author's Reply:
I couldn't agree more with Ms Fonfa and many others who expressed similar views in response to my editorial.[1]
One respondent, a nurse, reported that 20 years ago, while holding her first baby, she imagined what her life might be like if that baby were to die at a very young age, and that from that moment, her life and perspective changed and has remained so, in a manner entirely consistent with Ms Fonfa's and mine.
That it took a bout with a fatal disease to shake me into a better perspective is one thing, but the other is to be able now to offer some counsel to others depressed by a diagnosis of a life-shortening disease. I congratulate Annie Appleseed for doing something about it.
Roger J. Bulger, MD President (retired) Association of Academic Health Centers Washington, DC rbulger@comcast.net
Reference:
1. Bulger RJ. When doctors are patients: Is there such a thing as "posttraumatic bliss"? Medscape J Med. 2008;10:146. Available at: http://www.medscape.com/viewarticle/576257 Accessed July 30, 2008.
Breast Cancer: Choosing Wisely with Alternative Treatments
By Rebecca Ephraim, R.D., C.C.N.
“I was pissed! I don’t want to go through it again. But then I just said to myself, OK, I’ll deal with it.”
Gulp.
I didn’t know what I expected to hear from Ann Fonfa, the widely known
patient advocate who’s become a model for thousands of women looking for
direction once they’ve been diagnosed with breast cancer. But it wasn’t
this.
Fonfa maintains a highly regarded website that offers
voluminous resource information for complementary and alternative
therapies (see Info Box). Importantly, her site serves breast cancer
patients who want to straddle the worlds of conventional treatment and
complementary and alternative medicine (CAM) but often find that their
doctors offer little knowledge or inclination to combine the approaches.
From
1993 until late 2001, Fonfa, 57, grappled with recurring tumors on the
chest wall of her left breast. Although she had numerous surgeries, she
rejected chemotherapy and radiation and opted for a mélange of
complementary therapies that purported cancer-cell killing properties.
Among them: maitake mushroom extract, high-dose vitamins, coffee enemas,
and Chinese herbs.
It was a long slog, but in late 2001, she got the pronouncement: cancer free.
Although
her strength and resilience for plodding along all those years earned
her a loyal following, I certainly imagined that it was the “I beat
cancer” status that put her over the top for being the “go to” resource.
And
now, here in our phone interview in late May, she’s telling me that
just a few days before she believes she discovered a new lump and has
started CAM treatments for it. She got an MRI and is waiting for
confirmation. In a calm and measured tone, Fonfa says, “This goes under
the heading of ‘It is never over with breast cancer.’ ”
My list
of suitable questions suddenly turns irrelevant. And I, who have never
had anything worse than a case of ferocious flu, faltered in what to say
in response. “I’m so sorry,” came to mind but her optimism beat me to
it.
“I don’t care to focus on being fearful. It’s just not
beneficial for me,” she continues with a confidence that’s stunning
given what she’s just announced. “I’m a very upbeat person, anyway. My
perspective is that I can go forward and work with finding ways to be
healthy again.”
Upon consulting with her Chinese herbalist, Fonfa
started herbal plasters to her chest, special herbal teas, modified
citrus pectin, an immune booster called Immpower and a fermented wheat
product from Hungary that she says has good studies showing it helps
kill cancer cells.
However, she emphasizes that
each woman
needs to intelligently decide — with the help of her practitioner(s) —
what the best approaches are for her. “It’s a heavy responsibility to
have someone decide that I have the answers because it’s not very clear
that there are specific answers. We’re all a little bit different,” she
says.
PICK A PATH
Fonfa packs her website with information
from both conventional and CAM scientific conferences (which she
attends regularly), peer-reviewed research, and perspectives from other
cancer patients who have tried various therapies and reported on their
success. She weaves it together with a let’s-talk-over-tea narrative.
She
quotes liberally from the writings and reports of authorities in the
field, including Ralph Moss, Ph.D., who’s also a patient advocate,
author, and recognized cancer treatment expert specializing in
evaluating the claims of various cancer treatments and publishing them
in his “Moss Reports.”
He agrees with Fonfa that breast cancer is
one of the more complicated cancers. “It’s hard to speak of breast
cancer in one breath as a totality,” he cautions. “It really requires
some serious study on the part of the person who has been diagnosed.” To
that end, he offers his “Moss Reports” (cost of $297 each) on specific
cancers to help guide a patient to appropriate treatments that include
complementary and alternative approaches (there are also others who do
this, see Info Box).
He believes, from his research, that surgery
is still the main line of defense against early-stage breast cancer but
speaks optimistically of adjunctive treatment options that aren’t
widely on the radar screen, such as heat therapy (known as
hyperthermia), mistletoe (widely used in Europe), and extracts from
various Asian mushrooms (including the maitake extracts that Fonfa has
used).
He questions the categorical use of radiation and
chemotherapy, although he stops far from rejecting their use. But he and
Fonfa both criticize the side effects of the treatments and agree that,
if chemo or radiation is chosen, their side effects can be moderated
with complementary and alternative modalities.
Whatever the path,
Fonfa says a woman needs to empower herself with a program that feels
right and then stick to it. “What everyone has to do is look at the
variety of possibilities — and that’s what I call them — possibilities.
Many are listed on our site and you go through them and see what appeals
to you. You have to create a program for yourself that you’ll follow
and you have to follow it! No one gets well by doing it half-ass.”
Regardless,
she suggests that there is a common thread that should run through
one’s treatment, which includes excellent nutrition (Fonfa is vegan),
dietary supplements, exercise, and a detoxification program. Combine
this with a mind-body-spirit connection, “whatever that is,” she adds.
“I love to garden.”
THE ROADBLOCK TO CAM
The biggest
roadblock to pursuing CAM therapies, which can moderate symptoms and
contribute to healing, are the conventional M.D.s — oncologists who are,
by and large, the gatekeepers of treatment.
Moss, having
recently attended the conference of the American Society of Clinical
Oncologists, frames the challenge for a cancer patient who wants to
explore alternative therapies. “Certainly we’re seeing less overt
hostility coming from the conventional medical field … it’s now more a
matter of neglect rather than active hostile opposition.”
Naturopathic
physician Dan Labriola suggests in his book, Complementary Cancer
Therapies that you choose your doctors carefully. “Most people spend
more time shopping for a new car than they do picking their doctors,”
Dr. Labriola writes. “Selecting providers who are willing and able to
work together to provide the kind of care that you want is one of the
most significant steps in your battle with cancer as well as essential
to your general health and well-being.”
Ann Fonfa is a fierce
advocate of finding a practitioner who will embrace a patient’s
exploration of CAM therapies. In fact, she mentions a new organization:
the Society for Integrative Oncology.
However, she will have no need for it at this time — a few days after our interview I received this short email:
Dear Rebecca, A minute ago I got a copy of the report from an MRI I took.
Apparently I do NOT have a new tumor. My husband is in tears so I must
go.
Ann F.
Rebecca Ephraim, a registered dietitian and certified clinical nutritionist, is the national health editor for
Dragonfly Media. Contact her at [click to e-mail].
Nancy Evans contributed to this story.
Where To Go For More Info
Ann
Fonfa named her nonprofit website www.annieappleseedproject.org, with
Johnny Appleseed in mind because she’s on a mission to plant seeds —
seeds of information that offer hope to people with cancer.
Ralph Moss’s website: www.ralphmoss.com (he also offers a free E-newsletter)
CHECK THESE OUT TOO
Can Help referrals: www.Canhelp.com, (800) 565-1732
Commonweal: www.Commonweal.org, (415) 868-0970
People Against Cancer: www.peopleagainstcancer.com, (515) 972-4444
Smith Farm Center for Healing Arts: www.smithfarm.com, (202) 483-8600
Society for Integrative Oncology: www.integrativeonc.org, (856) 423-3201
From an article in the July 2005 edition of ConsciousChoice.com
November/December 2004 edition of Alternative Medicine magazine
Ann's NOTE: I put in corrected information where needed (usually within parens). Even the very best journalists make mistakes.
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.
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.
Here's a sampling of trials that are currently recruiting patients or already under way.
Ginseng and Ginkgo
Experts 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 Touch
Researchers 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 Diets
Columbia 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 Extract
Widely used in Europe for more than 80 years, mistletoe extract is being tested as a potential cancer-fighting agent by researchers at NCCAM.
Shark Cartilage
A consortium of cancer centers in ten states is testing whether shark cartilage could help slow the growth of breast and colorectal cancer.
Distant Healing
Can 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).
Selenium
The 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 Therapy
Researchers 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 Cancer
Patients 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 Cancer
Can 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
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 Ginkgo
Experts 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 Touch
Researchers 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 Diets
Columbia 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 Extract
Widely used in Europe for more than 80 years, mistletoe extract is being tested as a potential cancer-fighting agent by researchers at NCCAM.
Shark Cartilage
A consortium of cancer centers in ten states is testing whether shark cartilage could help slow the growth of breast and colorectal cancer.
Distant Healing
Can 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).
Selenium
The 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 Therapy
Researchers 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 Cancer
Patients 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 Cancer
Can 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
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