Complementary Alternative Medicine: Lessons From One Woman's Story Patient Power Health Issues June 25, 2010 Guests: Ann Fonfa Hosts: Andrew Schorr; Peter Frishauf Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. Introduction Hello and welcome to Patient Power Health Issues. I'm Andrew Schorr in Seattle. And this is Peter Frishauf in New York City. Peter, we meet a lot of interesting people along the way as we do our programs and people write us and people call us. I got an e-mail from a woman from Delray Beach, Florida, Ann Fonfa, and as I got to know her on the phone I heard she had quite a story, first of all in her journey with breast cancer beginning in 1993 and the treatment she began to investigate and where she pursued it, and also her very strong life continuing from that as a patient advocate. Some of that involves complementary and alternative medicine, or what we're now calling certainly in cancer care and, me, I think about it a lot as a cancer survivor, integrative medicine. And then also issues of how different drugs affect different people. So lots to talk about on our program. What's your take, Peter, on complementary and alternative medicine? Do you have a bias? Do I have a bias, well, I think just like conventional medicine there are good actors and bad actors wherever you look, and it's a very, very difficult. We have frauds in conventional medicine, we have frauds in alternative medicine, and it's all about buyer beware, and the patient has to be very, very careful who they listen to and how they take advice. And trying to get, as we talked about, evidence-based medicine or at least some way of assessing whether something that may be seen as an alternative will work together in an integrative way, whether it really has validity. We have talked about that on other shows. Let's bring in our guest, and that is joining us from Florida, Ann Fonfa. Ann, thank you for being with us. What started in 1993 that got you going down this road? 1
Ann Fonfa s Story Thank you for inviting me. I was diagnosed with breast cancer, but I was suffering really from multiple chemical sensitivities, and they are taking over my life and I was very, very ill. I knew that I had a stage I diagnosis, and when I spoke with an oncologist after surgery was done he was very casual about offering me chemotherapy. And I said, well, you know, I have these problems. Everything I smell makes me ill. I can pass out sometimes from smelling new carpeting or paint or fragrances. And he says, oh, it doesn't matter. And I just felt that it mattered. So I decided not to do chemotherapy, and I joined a support group. Now, how did things work out for you? So here we are years later. I assume that your breast cancer was treated successfully. I'm 18-year survivor. I had five years of local recurrences. In 1997 I was told that I was stage IV. I was pursuing all that time either complementary or alternative therapies, things that I thought might help me to stop having recurrences of breast cancer. It never became metastatic even though they told me I was stage IV, and I believe I did three or four things that helped me quite a lot, made me feel much healthier, and three things that specifically and distinctly stopped tumor growth. But the first, the only thing that stopped the onset of more tumors after being able to stop them was Chinese medicine, and I used herbs from an herbalist in New York City. All right. So herbs, but list some of those other things though. I'm dying to know. No dying. So the first thing that I tried was called metabolic enzyme therapy, and it was using, well, actually I was very focused on nutrition because I had already become a vegetarian some years before, but I wasn't really a healthy vegetarian. I was not eating meat, but I wasn't really eating healthy stuff like real fruits and vegetables and lots of it and beans and seeds and nuts. So I switched onto that kind of program, and that started to make me feel better. And then I focused on the idea of doing some exercise so that I was adding physical activity. And then I started a relaxation program, wasn't very good at meditation, so I moved on to stuff like yoga and other kinds of ways to be happy, sitting in the garden, gardening, that kind of thing. And I decided to go to Mexico after I had a couple of sets of recurrences. I've actually survived 25 tumors in the left breast, so quite unusual. And I did a Gerson program in Mexico. I don't know if you the Gerson therapy. I've heard of it. 2
Lots of juices, lots of fruits and vegetables, no protein for six weeks, and a variety of other things. And I went to the clinic. I was the healthiest person there, and my mother accompanied me as my companion, and we took a walk every day and saw really, really ill people. And some people benefit quite a lot. I don't feel that I did specifically, but the interesting thing was I'd had systemic candida when I got there related to the chemical sensitivity, and that cleared up within about two weeks. So could you just help us with the time line a little because you had a diagnosis of breast cancer and then you had surgery. Right. I had a recurrence, yeah. I had surgery, originally a lumpectomy, and then within less than two years I had another recurrence in the exact same spot, but because I had invasive lobular and the original surgeon didn't do a biopsy, so I probably should have had a mastectomy up front. I had what they call multifocal disease. It was really throughout the breast, but I didn't know that. And the second tumor that I felt, I had felt the first one, the second tumor that I found was dismissed as being granular therefore probably not breast cancer, and a few months later I had a mammogram which again didn't show anything because I had lobular and it tends not to show up on a mammogram. But I did have the biopsy, and that found that tumor and another one right underneath it that hadn't shown up. So then I was thinking, well, this is not good. It's less than two years and I had a recurrence, so that's when I decided to go to Mexico. And when I came back I had more recurrence, so I had to do some other stuff. And I tried a bunch of different alternative things like 714X, which is a solution from Canada, and eventually I had a mastectomy. And shortly after the mastectomy I developed chest wall recurrence tumors and was told that I was stage IV. That was about 1997, so I had recurred for quite a while. In 1998 or so I began to use high-dose vitamin A. I'd consulted with doctors and researchers in all different areas of the country. As both of you know researchers really like to respond when a patient or a patient advocate contacts them, so they were very interested in talking to me about protocols, and I decided to use high-dose vitamin A. And I was keeping a diary so I knew exactly what was going on, and three weeks to the day the tumors that I was looking at began to reduce in size and got much softer. Okay. So I was pretty excited. 3
Well, thank you very much. We're just going to take a break right now, Ann, and when we come back I'd like to ask you a little bit about the support group that you went to in New York and how you made various decisions to pursue your course of treatment after that. Welcome back to Patient Power Health Issues. I'm Andrew Schorr. Peter Frishauf is in New York. Peter. So, Ann, you were just talking about your initial diagnosis with stage I breast cancer. You either had a lumpectomy but before or after that you went to a support group in New York City. Tell us a little bit about that. Well, I was lucky enough to go to SHARE, which is a self-health group for women with breast, well, now we say people with breast or ovarian cancer, and in joining the support group all the other women were in conventional treatment but me, and so most of them had no hair and they were nauseous a lot and they were fatigued, and people said to me with real horror, oh, but you have to do something. What are you going to do? And in that group I said, well, I don't know, I'm sure there's an alternative. And it kind of was like a little bell rang and I said, oh, alternative medicine, I've heard of that. And I actually went to a used bookstore to find books because I thought alternative medicine meant old medicine. I didn't really know anything. And I began to explore it and found other people who were interested in exploring it with me. We called it the whole health study group and we invited speakers starting with an acupuncturist because we had all kind of semi heard of that, and from there we began to gather information. Within two years I had so much information that Cancer Care asked me to talk to their social workers from the patient perspective about complementary, see, back then it was called alternative medicine. There was no complementary. That came in later. So I went and talked to them. And in making the outline, wow, I thought, I had a lot of information. And I began to carry around a 63-page booklet. I worked for a company that actually did business presentations and they paid to make 500 copies, and I cared it to a conference of the National Breast Cancer Coalition about 1997. And I sat with my mother and my sister. My sister is a poet, my mother was a brilliant clever, witty woman, and I said we need a name, and we tossed names around. I went to sleep and in the morning I said I've got it. We're sowing seeds of information, and my name is Ann, so Annie, and we took Appleseed because apples are so healthy and an apple a day keeps the doctor away kind of thing. So that's your nonprofit that's continued, and you've been really a supercharged advocate since then, or you already were. So here's my question to you though, and, you know, you've heard it 10,000 times. Somebody says, well, this you believe worked for you, but 4
where's the evidence? Where can I see a clinical study that says if I do vitamin A or any of these things that you mention that that's a reliable treatment that maybe I can stake my life on? Where s the Evidence? Well, it's an interesting question, and I brought that same question to ASCO, the American Society For Clinical Oncology, and I said starting in about 1998, when are we going to have clinical trials that look at antioxidants with chemotherapy. And I was told, oh, we don't have those studies. And I went back in 1999 and I said, gee, it would be nice if we had studies, and I was told we don't have studies. And for years they kept telling me that until finally I got really upset as a patient advocate, and I said, you know, why don't we start them. And the answer became we can't patent that. And I didn't find that acceptable as a patient advocate that it comes down to a company saying, well, we can't patent it so there's no studies. And so I began looking at what other kinds of evidence there were. I'd look into, I read many, many journals. I sit in my office and I read just about all the things that are available in the area and there is many, many, as you know, there's levels of evidence. So there's a preponderance of evidence at the lower level, not randomized clinical trials because who is going to pay for it. And I don't feel like that should block patients' access to information, so we have a website, annieappleseedproject.org, that offers information at the level that's available. And as a patient advocate I really have to say from the lay position these things are basically nontoxic, and if they worked for someone they can work for someone else, and that was my original, unscientific idea, and I still believe it's true. Peter, how does that wash for you? Well, it's often very, very difficult to get evidence, and Ann's point that trials are not done, or rigorous trials often on complementary medicine so we don't really know is often true. Sometimes there are, and the profit motive is not behind everything, especially outside the US where you have, you know, where socialized medicine really is the norm. So in Denmark where there's access to patient records of every single citizen of the country going back for decades and decades you can look at that data and often get a lot out of it by looking backwards, which is a lot less expensive than looking forward. So there are, it's definitely, it's a huge problem that there is not good information on things, which are, not drugs in development and how do we pay for that. NIH is beginning to, but we've got a long, long way to go. In the meantime we're kind of in the dark forest with very, very few flashlights and I think it's grasping for where we see light that often leads patients into making decisions, and it's not a very good, certainly not a scientific way to assess treatment. But I'm not saying that conventional medicine has the scientific answers either. I think that Cochrane 5
Collaboration, which is a group of over 27,000 volunteers in more than 90 countries who are trying to get at some of these answers maybe offers the best hope. Yes. They have consumer advocates involved, and I've been involved for the last five years or so. Good for you. Now, I have a woman, a friend who unfortunately passed away from advanced breast cancer just a few weeks ago. I know her husband better than I knew her, but she made an educated decision to go to Germany for treatment. So she went away for many months at a time and then would come back and then with go again and with the hope that treatment that was available there that was not available in the US would extend or save her life. Didn't work out that way. Now, I didn't know all the details of either what was offered there or what wasn't offered here or even her clinical situation, but I personally had a little bit of a problem with that. I felt, well, gee, she's traveling afar with this hope but yet she's a way from her family when maybe she doesn't have a lot of time. I guess it's just an individual decision. I can't judge her, but I know people sometimes do that or at great expense. You went outside the country, and how do you have real hope as opposed to false hope. Okay. Well, I see three or four things out of that. One is when you read obituaries and someone dies of cancer it's usually said if they had conventional treatment they fought a long and valiant battle. If they go out of the country for treatment we think, oh-oh, alternative medicine killed them. But cancer, people die from cancer every single day who did every possible conventional thing. When you're faced with a life-and-death moment it makes you think, whoa, I'm going to try anything and everything. In terms of what's hopeful, many things are hopeful to us as people with cancer because they've worked for other people. Is it great to go out of the country? No. But that's the situation we have because in the United States we have not been able to bring ourselves to study things that may be useful that are not pharmaceutically based, and that is unfair to the patient population. And I speak as a patient advocate who has stood up and said this since 1995 at every possible venue that I can. I'm very, very angry about it actually even though I'm polite, but it's terrible. Of course you don't want to leave your family when you're very ill, but that's what the situation is. And the fact that insurance doesn't cover anything in the so-called alternative world or even covering our vitamins, it's crazy. They don't cover wellness. Is that correct? No. That's the position. We're stuck with it, but it's a live-or-die with people with cancer, and all too often people with advanced disease are the ones who chose to go and do alternative cancer treatments, and they're probably, they may have too advanced a cancer to survive. And yet there are some survivors from everything. We all know that. We all wonder why, but study that. 6
Wow. We have a lot more to talk about as we continue our decision with Ann Fonfa from the Annie Appleseed Project that she established, and you could hear that she sounds off, and she sounded off to government. When we come back in I want to know whether you're thinking that their ears are opening at all. Are you making any progress? Much more to talk about as Peter and I continue with Ann Fonfa on Patient Power Health Issues right after this. Welcome back to Patient Power and with us is Ann Fonfa. Ann, you mentioned that you are very vocal when you talk to government institutions about the need for more research in certain areas. Tell us a little bit more about that and are they listening. Government Institutions and Research Well, the first thing I want to point to is when I was diagnosed in 1993 the doctors I was speaking to said to me, yoga, are you crazy? You're going to kill yourself. And just last week ASCO, American Society for Clinical Oncology, produced paper in advance of their conference talking about how healthful yoga was. Of course the final thing was we need more evidence. They always say that. In terms of the government doing something, I am not seeing very much. We do have the Center For Complementary and Alternative Medicine, and the National Cancer Institute has the Office of Cancer Complementary and Alternative Medicine, which is definitely advanced, but their budgets are very small and the need is very large. They're slowly, slowly, slowly, slowly going. Plus for example I mentioned that I had done traditional Chinese medicine using herbs, but unfortunately science has been set up to study one herb at a time and sometimes the active element of one herb at a time, and yet the prescription I took that benefitted me was maybe 20 or 25 herbs. So studying the active ingredient or one herb slowly, slowly, slowly is going to take a lot longer than I possibly have to spend on this earth. So I'm concerned and perturbed about that. I'm also perturbed about studies that do things like sham acupuncture versus correct acupuncture. We have no evidence that sham acupuncture is okay for humans. We have no evidence that it doesn't have an effect, and yet that's been chosen. Sometimes I feel like you don't need evidence to say no to something, but that's a very scary factor in itself. Right. So when you had this, when you had this therapy with 25 herbs, tell us a little bit about how you got it, how you knew whether or not you were getting pure herbs and that there was active ingredient in each one of them and how the practitioner who prepared this for you, why you believed that this person actually knew what they were doing would be helpful for you. What gave you the confidence to go ahead with a treatment like that? 7
Good question. We met at the San Antonio Breast Cancer Symposium, and he came up to me. He was there to learn the scientific stuff that was going on in breast cancer that year. It was 1998 in December. And he had an Ph.D. in biostatistics but also was a fourth generation Chinese herbalist, and a friend introduced us. And he said, oh, I've heard about your work. I'd love to help you. I know you have ongoing cancer issues. And I said, well, thank you very much. And that was in December. And then in April I contacted him and said, you know, this is really getting crazy. I just had my like 24th tumor or 25th tumor, and I was nervous. So he gave me an herbal prescription, and we went to Chinatown together and I filled it. He sent me to a shop that he felt had good quality herbs. I didn't know their names because it was written in Chinese, and I didn't ask their names because they wouldn't really mean anything to me. I was sort of taking a leap of faith, which is one of the things we joke about on our site. You know, we have evidence and we have leaps of faith. And I took the herbs, made it into a tea and the next day my entire body became a hive. I mean every inch of me, and I was completely freaked out about it. But three days later what I discovered was my chemical sensitivity reactions had reduced by about 65 percent, and I was astounded. And not only that the symptoms completely changed from getting this terrible pain in my head to feel like I was going to fall down, I got this like throat clearing, and it was very mild and I didn't feel like I was choking, and that was what my reaction became. Three days. So I thought, wow, this is amazing, something really happened. But I was afraid, and I waited until June. So all of May went by while I thought it over, and then in June I started doing the herbs again, and I did them, I had an MRI to see what cancer I had, and it showed about three and a half centimeters of involvement on the left chest wall. And I took the herbs every day, and then after about, I don't know, maybe nine to ten months, he said, oh, you can stop now. And I said, no, no, I can't stop now. I was afraid to. And I kept on going, and then eventually I had another MRI which showed all clear of cancer, and from that day to now I've have had no more cancer. That was, strangely enough, I lived in New York City. It was September 12th, 2011 that was I was told that I would live. The day after we found out so many people had died I had the opposite. Wow. So, Ann, people listen and they say, maybe a woman diagnosed with breast cancer, and said, okay, I want that to be me. But I go to my provider, as you did the first time around, and you get a blank stare or you get a scolding look. You know, where are we now with a true partnership with providers now where all this can be part of the discussion? So there are some integrated oncologists. We have the Society for Integrative Oncology, which I am a proud member. There are some oncologist members. For example the president is Donald Abrams of UCSF in San Francisco, and he is the head of oncology. He is an integrative oncologist and the president of that organization. There are naturopaths 8
who are trained in oncology now, and many cancer centers now have nutritionists on staff, but unfortunately the oncologist has to recommend that the patient see the nutritionist, and that doesn't always happen. But it's getting better very slowly, but it's totally patient driven. We've been out, not just us of course, but patients in general are saying, well, what should I eat, Doc, and doctor says, oh, it doesn't matter. That's what they always said, but that does matter, and we're getting that message out to the public at large as well. It seems pretty critical nowadays. We understand, genes have shown us, we can now look at our gene profile, we know what we eat affects our genes. It makes perfect sense. We were put on this planet. The food is on the planet, fruits and vegetables are the food that grow on our planet. They affect our genes in a good way. But the American diet, as you know, called the standard American diet or SAD, and terribly sad it is, is ruining us. And it also affects us for heart disease and diabetes and high blood pressure, osteoporosis, arthritis. So living healthy the way we suggest on our website is certainly a direction that everyone can take in, and it does help everyone reduce risk. Okay. Ann, we're about to take a break. When we come back let's talk a little bit more about the Chinese herbalist you met at the San Antonio Breast Cancer Symposium. That is a conference of leading oncologists from all over the world, and the gentleman who you met was a part of that. More after the break. As we continue Patient Power Health Issues, Andrew Schorr here with Peter Frishauf and Ann Fonfa, who founded the Annie Appleseed Project and used what we might call complementary and alternative and integrative medicine now to help her in her battle with breast cancer, recurrent breast cancer. So, Ann, you were saying a little bit ago about going to the San Antonio Breast Cancer Symposium, which is kind of like the World Series of breast cancer research and specialists getting together, I've gone myself, and you met someone there who is involved in Chinese medicine, and that took you back to New York City where you are from to get a combination of Chinese herbs that helped. Quite an odyssey. So is that maybe a sign of hope, is that medicine from really going back like 5,000 years and then research with the newest medicines, that maybe that can come together somehow and help us all? That would be my dream, that we have truly integrative medicine. There is possibilities on so many sides and people need help. I mean, you know, you said you were a survivor. Then you know how difficult the treatment is. Conventional treatment is really a problem. It's excellent in killing cancer, but it's killing other cells too, and there's harms all over the place, and I'm concerned about that. I think we are way too casual. In terms of the Chinese medicine I did have strong reactions to it, and it did cure my cancer. I mean, it's an N of one. It's just me right now in this particular world, but he's treated over 800 women, many of whom have really benefitted. And he's focused on 9
breast cancer. He had a lab for a few years at the Strang Cancer Prevention Center, but they recently closed and the lab closed as well, but the focus is to really make a difference for people with cancer. I've got to ask you this, though, Ann. As you know, there may be very good, well-meaning people like this gentleman who helped you, and in any area where there's money there are people just out to take your dough and saying, well, here's a testimonial about a lady who did this or that. For instance, I saw it in what do you call it, like an electromagnetic medicine or something where they put these wires on you and it would cure whatever, you know. So how do you advise people on whether something really has a chance and it's not somebody trying to commit fraud, if you will? How Can Patients Decide What s Useful and What s Not? Sure. We tell people to focus on the stuff that has the most evidence base. That seems clear to us. If something is brand new then I need, and people contact me with stuff all the time because our website has such a large reach these days, and I ask them what's your basis. And if they can't come up with any studies of any kind then obviously they don't have a real basis. But almost everything that has been helpful to me has a research base and I've looked through it and I think it's a substantial base. Certainly nutrition, certainly exercise now has caught up. Certainly we just now had as I mentioned a study about yoga, which in a way seems kind of funny that our less than 200 year old tradition looks at a 5,000 year old tradition and says, oh, yeah, maybe grandpa had something going. But in any case, there are a lot of things with evidence, and we suggest to people that they take a look at that. We do not give advice because we're a volunteer organization who are patient advocates, people with cancer or their caregivers and family. What we do is direct people to things on our site that might be helpful to them, and we show them where to find information. And we have as much evidence as we can around the things we think are meaningful. But, yeah, of course. Yeah, there are studies that show oncologists are giving people chemo the day before they die or the week before they die, and that's not very ethical in my mind either, so, you know, there are schlubs in every area. There are schlubs in every area, there are also an awful lot of good and caring oncologists. Absolutely. Absolutely. I totally agree, and I want those good and caring people to open their minds just a little bit more. They've started to accept nutrition, and that's great. They understand yoga. They're looking at physical exercise and activity. They've got to open up more because their patients need them to. 10
And you certainly met one open, caring person at San Antonio who you said, these were your words, it was kind of a leap of faith, but you do believe he saved your life. Could you tell us who that was, and I'm sure we're going to be getting this question from our listeners. The phone is going to ring. Right. Right. Well, his name is George Wong. He is not an M.D. He has a Ph.D. in biostatistics, so he understands clinical trials and so on and evidence base, and he practices in New York City. He is a fourth generation herbalist and was trained by his grandfather in Chinese herbs from early childhood, and I think he's brilliant guy. His career used to be in helping women become able to get pregnant. You know, acupuncture and Chinese herbs have been known to be helpful for infertility, and he changed in to breast cancer over the years because breast cancer had become such a big problem. And I was very lucky to have met him when I did. I literally had five years of continuous tumors that didn't respond to anything except, as I said, one tumor responded to high-dose vitamin A and one tumor responded to a maitake mushroom extract. And then his herbs came along and truly made a difference. Well, we hope it works for a long time. You could put people in touch with him. And your website again? Annieappleseedproject.org. One last question for you, Ann Fonfa, and that is, and I know you like I go to the ASCO medical convention, 30-, 40,000 people discussing cancer issues, and you've been involved in many conferences and reading, as you say, everything you can. Are you hopeful that we're moving in the right direction for the benefit of people diagnosed with cancer? Absolutely. And what gives you that hope? The yoga study or what, what gives you that hope? 11
Yeah. I see many more, many studies that really 18 years ago were laughable now are being understood to matter, and that's making a difference. What bothers me is the slowness of it all, and, science, it's so slow. I want to call it technology so we can change every single week. Well, good for you. Peter, we're going to revisit this topic I'm sure, and if we do it a year from now or two years from now hopefully it won't be so slow that we can report some progress. I couldn't agree more. All right. Ann Fonfa, thank you so much for being with us on Patient Power Health Issues. Continued good health to you, Ann. Thank you so much. Strange for the work you do because I know people come from around the world, want to go to the Annie Appleseed Project, want to have these discussions. And hopefully you are right that there are more and more what have been traditional providers that you can have an honest discussion with, the ears are open on both sides and everybody can work together to beat cancer. All the best to you. Thank you so much. In Seattle for Patient Power Health Issues, I'm Andrew Schorr. And this is Peter Frishauf in New York City. Thanks for joining us. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. 12