Friday, November 6, 2015

Where Integrative Oncology is needed, it is NOT there

Today, November 6, 2015 an email from Cancer Network informed me that ASCO (Am Soc for Clinical Oncology) just updated their 2011 recommendations for nausea and vomiting.  Nov 2015 antiemetics

Since I keep track of this kind of thing, I remember that some years ago, ASCO reported that GINGER worked really well for nausea even when using anti-emetics (pharmaceutical drugs that do NOT work for everyone).

My next step was to examine the guidelines - NO mention of GINGER. I looked back at the 2011 guidelines - NO mention of GINGER.

Then I found an article from 2009 discussing their announcement. ('Somehow' this has been left out of clinical guidelines) despite glowing statements of its value.  But as we know, ginger cannot be patented and therefore has no business-model ‘champion’.  It matters not that it WORKS.
“Compared to placebo, the researchers found that all three doses of ginger significantly reduced nausea. They also observed that the two lowest doses had the greatest effect, reducing nausea by about 40 percent.  (0.5, 1.0, or 1.5 grams)

"By taking the ginger prior to chemotherapy treatment, the National Cancer Institute-funded study suggests its earlier absorption into the body may have anti-inflammatory properties," Ryan said in a statement.”

Comparing to placebo is insane anyway because it really ought to have gone head-tohead with the drugs that work to reduce nausea or vomiting BUT cause their own toxic adverse effects.  Some people – most people, refer to these as ‘side’ effects.

Here, taken from, is a list of the possible adverse effects of forsaprepitant that are ‘More common:

  • Black, tarry stools
  • blurred vision
  • chills
  • confusion
  • cough
  • decreased urination
  • difficult or labored breathing
  • dizziness
  • dry mouth
  • fainting
  • fever
  • increase in heart rate
  • lightheadedness
  • lower back or side pain
  • nervousness
  • pain, swelling, or redness at the injection site
  • painful or difficult urination
  • pale skin
  • pounding in the ears
  • rapid breathing
  • shortness of breath
  • slow or fast heartbeat
  • sore throat
  • sunken eyes
  • tenderness, swelling, warmth, or skin discoloration at the injection site
  • thirst
  • tightness in the chest
  • ulcers, sores, or white spots in mouth
  • unusual bleeding or bruising
  • unusual tiredness or weakness
  • wheezing
  • wrinkled skin

But as they very often occur in large numbers of trial participants or drug users, they are not really aside from anything, are they?  Language matters.  And the FDA (Food & Drug Administration) has NOT standardized how adverse effects are measured.  So that means my Grade 3 or 4 (worse) may be judged Grade 2 by the involved Principal Investigator (PI) of the trial.  In fact I once contacted FDA to ask what ‘rare’ meant.  I was told that the PI was the decider here.

THIS is why I support Integrative Oncology. Integrative means the ability to look at drugs AND natural substances so that the best COMBINATION might be offered to people in need!

Don't you agree?

Wednesday, August 26, 2015

New Cancer Drug Approved, But Does it Prolong Life?

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.

Ann Fonfa responds to "When Doctors are Patients..."


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, 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


1. Bulger RJ. When doctors are patients: Is there such a thing as "posttraumatic bliss"? Medscape J Med. 2008;10:146. Available at: 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


1. Bulger RJ. When doctors are patients: Is there such a thing as "posttraumatic bliss"? Medscape J Med. 2008;10:146. Available at: 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.


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 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, 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: (he also offers a free E-newsletter)


Can Help referrals:, (800) 565-1732

Commonweal:, (415) 868-0970

People Against Cancer:, (515) 972-4444

Smith Farm Center for Healing Arts:, (202) 483-8600

Society for Integrative Oncology:, (856) 423-3201

From an article in the July 2005 edition of

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.

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 ( (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 (, 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 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 Offers information about treatment options, links for online support groups, and lists of clinical trials.

Breast Cancer Action 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 A comprehensive list of online resources with easy-to-use links. Includes a section devoted to alternative, complementary, and integrative medicine.

Cancer Research Portfolio 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 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 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 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 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 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 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 Useful information about conventional and alternative options, with a focus on patient activism.


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 ( and the Office of Cancer Complementary & Alternative Medicine (

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).


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.


Written by Peter Jaret after telephone, email and in person discussions with Ann Fonfa

Published in Alternative Medicine magazine, Nov/Dec 2004 issue

Tuesday, October 28, 2014

Random Thoughts from the Patient Perspective

Listening to presentations by Integrative practitioners at the 11th meeting of the Society for Integrative Oncology I am struck with the vast differences between patients and providers (of any type).

Conferences are places to learn new techniques, discuss existing modalities, present data, visit with friends and network with new folks. All terrific activities. But even the language of scientific presentations create a barrier between presenters and their human research subjects. Stats, charts and special words abound.

But as a rude button I once owned stated: “This is your job, but it is MY LIFE”.

The urgency that a person with cancer feels from diagnosis until the rest of their life (some can let it go), is not reflected most of the time. In fact one slide showed that staff meetings are ‘celebrations, remembrances, and consults/presentations’. Oncology is such a difficult field precisely because we celebrate very little gains while sorrowing over the way too many losses.

Another slide shows a long list of dietary supplements that someone with cancer is taking. The room breaks out into laughter – it is absurd for a healthy person to imagine the desperation that fear brings. The dissatisfaction with available therapies, the constant pain in so many locations of the body, the fatigue that drags down spirits and is almost never-ending despite the many complementary therapies. By their very definition complementary therapies are meant to work with chemotherapy, radiation and the other available conventional treatments.

A person who chooses to take dietary supplements reads an article, feels like it might help. And indeed the contents of many of the capsules have been shown in cell culture, animal and small human studies to kill cancer cells. Should they speak to their conventional practitioner, s/he will not know enough to advise if it might be useful and will generally say “NO, don’t take that”, (partly because they don’t know (enough) about it and partially because not much is really known about any individual. Mainstream doctors, taught in the pharmaceutical mode, where absolutely every drug causes harms even as it may help mask symptoms, kill the cancer cells while killing too many normal cells, changing DNA, limiting joy in life – expect Level I studies of natural substances, even food. We heard that on day one from the mainstreamers who spoke- when asked by 2 different advocates where nutrition fit in, they had no meaningful response. And now we know our Integrative practitioners are getting a laugh out of our need to save ourselves from this dire fate.

As an almost twenty-two year breast cancer survivor who used 3 lumpectomies, a left mastectomy, a right mastectomy a year later, and then had chest wall recurrence on the left (only side with cancer), yet never took chemo, radiation or hormonal treatment, I didn’t WAIT for Level I studies. I charged forward using the stumble, bumble, fumble method most do. I got amazing results with much of what I did, yet no support from doctors along the way. That room filled with laughter made me feel too little has changed.

We are all an N of one. There is absolutely no guarantee that any treatment or combination of them will affect us in the way we most wish – to stop all cancer and to be ‘cured’. Do many of us ever feel ‘cured’. It’s the new C word.

Since the randomized multi-center clinical trials taught by Pharma, encouraged and discouraged by NCI and FDA at one and the same time, will probably NEVER be done, we need a NEW paradigm that can truly figure out what I, the unique individual with cancer, needs. It seems to me some modalities are closer to this truth than others. The existing system is corrupt and money-driven, we can all see that, yet are stuck in it. Insurance companies backed by BIG PHARMA, GE, Dupont and others, are really deciding what to bring forward to market. The patients and caring practitioners are not in that loop even if they ask us to serve on panels.

We’ve got to stop using language that harms – twice on day one I held up a sign: For Whom Treatment Failed (as two of the presenters talked about people FAILING their treatment). We all know that language matters – or we should.

We all know BIG PHARMA would be on natural substances in a New York minute if they could patent them – actually mentioned by an audience member. But whatever they would create would make a mockery of nature as they twist and turn the chemistry and the essence of it, it would end up toxic like all their other creations. Even food – the building blocks of our bodies – is kept out of the loop all too often. What’s the evidence for the ‘bland’ diet fed to those recovering from bone marrow transplantation?

The isolation of each individual field, understandable and not, is an additional problem. Many with cancer choose a variety of modalities, they need to. Isn’t that our basis for Integrative Oncology which must be clearly accepting, not laughing.

I urge you all not to laugh, but to dream bigger.

PS: Do you recall their used to be a list called Unconventional Therapies list? I often think of Dr. Emanuel Revici who practiced in New York City. He published a textbook of his work in April, 1961 and by June 1961 had been placed on this list? What Was the Evidence for Saying NO?

(Actually I had a chat with Helene Brown in 1995, a National board member of the American Cancer Society which had been involved with this list for decades). She told me a vague tale of ‘standards’ including not being part of a major institution, no one else doing the work, and it not sounding right. I am completely serious about this. Bottom line, there were no standards for judgment, certainly NOT scientific standards.

Was it proven that IV vitamin C drips didn’t work when an oral version was used? Was it proven that Hydrazine Sulfate didn’t work when participants were not told it was an MAO inhibitor that caused grave harms with many other classes of drugs?

Ann E. Fonfa, President, Annie Appleseed Project Delray Beach, FL – an all-volunteer nonprofit (561) 749 0084
Find us on Facebook, Twitter @annieappleseed

Tuesday, August 5, 2014

Discussing the decision NOT to recommend vit D screening nationwide.

(prompting some thoughts on FREE LUNCH)

"The benefits of vitamin D, at least to bone, are clear. Beyond debating the numeric definition of vitamin D deficiency and seeking additional potential benefits of vitamin D sufficiency, future research should address how to promote moderate exposure to the sun and healthful eating habits and increase compliance with vitamin D supplementation. Before considering ordering a 25-hydroxyvitamin D test, clinicians should ask themselves why a patient may have vitamin D deficiency in the first place and take the opportunity to promote a healthful lifestyle. Clinicians also should assess whether the patient will be compliant with vitamin D supplementation and how to increase that compliance. Without changes in lifestyle or compliance with long-term supplementation, a short duration of vitamin D "sufficiency" maintained by high doses of vitamin D does not warrant screening for vitamin D deficiency in most patients."
   (MY emphasis above)

Many doctors lack time to read studies  -  probably getting their news from titles of studies or headlines, which we know don't often correspond to content.  With less knowledge they generally follow the 'instructions' of the companies they have known - remember most of the doctors in practice today went to medical school at the time (stopped only recently).  Here are some articles on that CONFLICT of INTEREST.

Additionally current screening is about disease DISCOVERY even though it is often referred to as 'Prevention'.  Taking vit D3 on a national scale , would be TRUE prevention and that is not in step with the goals of our consumerism-oriented society.  To be fair, any new concept takes an extremely long time to enter our medical system so this one will be kicked around for perhaps another TWENTY years before it is well understood.  Still many studies have shown those diagnosed with cancer have low levels of vit D3.  It is not yet clear if this is a cause.  Buy many of us who follow an Integrative health program - using (mostly) Organic food, being physically active, reducing stress (learning to deal with it better), detoxing, and taking dietary supplements, generally will add vit D3 if needed.  I certainly did.

To protect yourself, get tested by your primary care doc for vit D3 levels.  Build yourself back up and STAY with it.  Keep it at an excellent level for your health.  Do get a bit of sun everyday - 15 minutes for those in the North and 5 minutes for Southerners.