Alternative Treatments and Self-Medication: A Page Reprinted from the ANNIEAPPLESEED PROJECT

This talk and other presentations given at the Evidence-Based CAM Conference can be ordered from: http://www.cstapes.com or by calling (845)679-6885. SMART AND INFORMED SELF MEDICATION: OMG, AFTER ALL ITS MY BODY ABSTRACT In my work with cancer clients I have become more and more aware that many of them are resorting to self-medication for various reasons. Some cancer patients are self-medicating due to finances, others due to not getting what they need from the experts, or due to an unwillingness to travel far and wide to doctors and clinics. Self-medication is more possible now with the vast amount of information and resources available on the Internet. The Internet provides access to peer-sharing information on Listserves, to organizations that provide in-depth resources for the cancer patient's particular cancer, to stories/blogs from many survivors sharing their experiences and more. My talk focuses on bringing awareness to the rapidly increasing phenomenon of self-medication and touches on how cancer patients can empower themselves to be "smart" and "informed" in their treatment decision process, taking into account their particular style of risk-taking. SMART AND INFORMED SELF MEDICATION: OMG, AFTER ALL ITS MY BODY My name is Madeleen Herreshoff and I am the Director of CANHELP Inc, a cancer treatment information and referral service founded in 1983. I am really going to enjoy introducing this acronym OMG. If you are an active person on the Internet and if you are younger than I am, you will probably already know OMG. I learned OMG and other funny words like LOL three years ago when I started to look into BHRT (Bioidentical Hormone Replacement Therapy) on the Internet where I entered the amazing world of list serves and blogs. OMG, oh my God, this was an eye opener. There is more information and experience being shared on these listserves and blogs than you can absorb. Some are excellent, and of course some are foolish. I have been a cancer advocate for the last twelve years and during these 12 years I have talked nearly daily with cancer clients of all walks of life, of all ages, with every cancer and at every stage of disease. I myself have walked the cancer road twice and am a walking-one breasted woman. Tomorrow at Lynne Farrow’s talk “The Perfect Storm Theory of Breast Cancer“, you can see my one and only breast on screen showing how iodine helped “disappear” a cyst after just 6 months of self-medication. As an aside, shortly after my mastectomy in 1994, a Dutch niece of mine, who is a photographer and lives in Amsterdam, asked if she could photograph my one breast with a tulip over the fresh scar side. I was exhibited in such fashion in a well-known gallery in Amsterdam. My one breast is famous! LOL (laughingoutloud). Recently, I have taken a hiatus from working with cancer clients in order to re-evaluate my priorities. One of my new projects is writing a book based on my working with cancer clients for the past twelve years. My talk today focuses on pulling the ghost out of the closet on a Self-Medication movement. This movement has been going on more or less silently in fear of having the medical world respond with DANGER, DANGER, DANGER, BIG C or worse in fear that they will try to stop us from self-medicating. I just read that the big pharmaceutical company Wyeth has been lobbying the FDA to put a stop to the compounding of bio-identical hormones for women. So this fear is certainly not unfounded. We all know what it feels like to be disempowered and for the cancer client it can be devastating. At the time I was contemplating writing a book on self medication, I saw a beautiful movie called “Gypsy Caravan” with the subtitle “You cannot go Straight, when the Road Bends”, a Romani proverb. Wonderfully simple and direct. But we all know when you have cancer nothing appears simple and direct. Your world turns upside down and all of a sudden you have to learn everything about your particular disease and treatments in as short a period as possible. Typically, we get overwhelmed with information, even when hiring companies like mine, CANHELP or Cancer Decisions run by Ralph Moss and others. In an effort to address this big problem (we all know cancer patients need to be less overwhelmed not more), I started offering private consultations to my clients a year ago to alleviate this sense of being overwhelmed. Up until then, most of my information was supplied in individualized reports with limited telephone support. As I spoke with cancer clients more intimately over time, they confided that they were often self-medicating and finding it very difficult to share with their doctor what they exactly were doing. I discovered that my clients were calling me to get empowered for what they are doing or wanting to do. They want to learn to listen to their bodies rather than get care primarily based on the experts‘ opinions or statistical numbers. Thus, one day, it hit me that these clients were part of a fairly new and clandestine self medication movement. OMG There are various reasons for this phenomenon. One may be financial reasons, another dissatisfaction with their doctors treatment/protocol. As cancer patients are getting better educated about what treatments, supplements etc. are out there, they learn to manage their health journey more closely. They have figured out how to order a lot of the supplements or nutraceuticals recommended by their doctor on the Internet and often find ways to get them cheaper. They can even order supplements that may be impossible to obtain here in the U.S. from overseas or travel across the border for them. Cancer patients are getting VERY savvy about these possibilities and readily share this information with their fellow cancer patients, who are interested in looking outside the box. This new breed of cancer patients feel it is their birthright to self medicate. I read an article in the New York Times some years ago about the increasing phenomenon of yuppies getting their pharmaceuticals from overseas, but in the case of cancer or for that matter in the world of hormones, the age group looking to self medicate spans across the board, from twenty year olds to eighty years old. Allow me to backtrack here to my own cancer journey. In 1991 I was diagnosed with a poorly differentiated aggressive invasive breast cancer I had surgery, radiation, but refused chemotherapy, even though the doctors told me I would be dead in 5 yrs if I refused. My friends set me down and with the best of intentions told me about so and so who did chemo and survived, “did I not want to do this for my young son“, “chemo is not so bad” and “didn’t I want to live“? My husband was the only one who said: “You think about what you want to do and I will support you, no matter what.“ If I had not had him, I am not sure I could have gone against the fear mongers. This was 1991 and going against the advice of the doctor was not any way as prevalent as it is today. I realized that if I wanted to see my young son go to college some day, I had to do what I thought was best for me, not what the doctors thought was best. But I knew I had to put something else in place to prove the University multi-task team wrong. I learned about alternative therapies, good food, avoiding estrogens, plastics, endocrine disrupters, etc. In May of 2008 it will be 17 yrs since my first occurrence of breast cancer. I did have a local recurrence and a mastectomy three years later. At that point, I intensified my alternative treatments and learned in the process how to self-medicate. So how did I know how to Self Medicate? By educating myself, by seeing a variety of doctors, conventional and alternative, joining an Internet breast cancer list serve Amazon and yes by trial and error. AND over time I learned to pay attention to how I felt or what my body was telling me. Accordingly, I changed, added to or subtracted from my protocol . Yes, I made mistakes. I “wasted” a lot of time and money going into dead-end roads, not realizing that “You cannot go Straight, when the Road Bends.” But, these dead-ends taught me a lot. They taught me that my choices were often based on the FEAR factor, which rarely resulted into a good outcome. FEAR is our biggest obstacle, esp FEAR OF CANCER or as they call it in our case the BIG C! Not only can FEAR lead us into making wrong choices but it can also stymie us. I can’t tell you how many times my cancer clients who have all the information they need to act, get completely stuck and unable to make a step forward, because of thoughts or beliefs such as “my doctor told me not to do anything else than his/her protocol” or “what IF“ and “how do I know it’s the right thing to do?” OMG, is right. Ultimately, nobody knows for sure what the right thing to do is, no matter which direction you take; conventional or alternative treatments both come with RISKS. My friends and clients have survived and died in both camps. The best the cancer client can do is “to do the next thing” after having done the research and checked in with their body. After all its YOUR body! When I ask my cancer clients what they really WANT to do, the answer is often different than what the logical mind is telling him/her. So the big question here is how do you bridge what cancer treatments you SHOULD do and which treatments you WANT to do. First, lets take a quick look at how the medical establishment is curing cancer. Lets face it we are losing the war on cancer. Nixon declared a war on breast cancer and other cancers in 1971. And here we are mind you 37 yrs later, in 2008 and we are still hard at it to provide a cure for most cancers. As long as I see my friends and family members struggle and die from this disease, I am not impressed with our war on cancer. As a matter of fact, “war on cancer” is a very ill-conceived notion. We need to be focusing on how to heal from cancer. Over 1.4 million new cancer rates and 560,000 deaths of cancer were projected to occur in 2007, showing a continuing increase in the incidence rate by 0.3% per year in women. OMG! Doesn’t sound to me that those numbers may save our children, especially not my granddaughter or for that matter African Americans who still carry the highest burden of cancer. Those of us who have seen our mothers and fathers or dear friends struggle with cancer, do not want to suffer from multiple courses of chemotherapy and/or radiation. With increased access to information, cancer patients are getting smarter and are actively seeking other routes towards healing and they are learning how to self-medicate. Many of those who self medicate feel it has saved their life, esp those who have gone from doctor to doctor, clinic to clinic for help without desired results. So what exactly does self medication look like? The picture is going to be very different for each individual. I have clients who medicate themselves primarily without doctors other than follow-up diagnostics. This type of client, so to speak, never steps outside of his/her house for therapies, orders supplements up from the Internet, brews special fruit drinks, eats special diets, tries innovative alternative therapies, detoxes, injects, and manages to survive. I know an 84 yr old man, who was diagnosed at the age of eighty with a pancreatic cancer mass wrapping around his spleen and into his stomach. At first he refused to do anything about his large inoperable mass. The prestigious University surgeon gave him 6 weeks to 3 months to live. But his son talked him into getting a report from CANHELP, did his own research as well and put together a protocol they could do at home including high dose German enzymes called Wobenzyms, mushrooms, the Budwig diet, Poly-erga, making their own turmeric pills as well as other supplements. After 9 months on this protocol he felt so much better that he decided to have a CT scan. The scan showed that the mass had shrunk significantly with some residual left. 12 months later another scan showed he was clean. In May he will be 85 and, being an architect, he is busy designing a small, energy efficient house. To this day he is still doing some modified anti-cancer protocol. He is believer of the Wobenzyms or Wo-begones as he calls them. Other cancer clients consult with many unconventional doctors and follow the protocol carefully until it looks like it is not working or too costly. Then they gleen from their protocols what’s best for them. I am sure you are aware that it can be very costly to go to unconventional doctors because insurance may not cover their care or they will prescribe nutraceuticals, intravenous therapies and other lotions and potions which easily can cost the cancer patient $200- 300/week. One of the therapies I often recommend for lung cancer clients is the Sun Soup, which costs $650 for a month supply. When you add that to other nutraceuticals, therapies etc. the cancer client is easily out $1,000/month on supplements alone. Not everyone can do that or not for long. So lets take a case of one of my cancer clients who wants to take the Sun Soup, which is based on mushrooms, soybeans and other ingredients, and after 3 months he or she can no longer afford it. We all know that most of the time any cancer treatment needs to be taken longer than 3 months in the hope to shrink a tumor or avoid a recurrence. So some of my clients look for a substitute cheaper herbal soup with similar ingredients from companies such as Avena Botanicals, although not peer-reviewed like the Sun Soup. But not all self-medicators are poor or have limited funds. There is another cancer person who does have money, but who had become profoundly dissatisfied with the medical establishment‘s care for cancer, not making improvements or getting inadequate support for what the person wants to explore, even if this is within the medical world. Many of my clients are so good at gathering information from list serves, cancer advocates, cancer treatments centers, cancer doctors, friends, support groups that it has become a way of life for them. One of CANHELP’s clients, Julie, was diagnosed in her late thirties with advanced breast cancer, and consulted with me four years ago. She did not want to do any conventional treatments, no surgery, chemo or radiation for her 6 cm breast tumor with possible lymph node involvement. I am not a doctor and do not tell my clients what to do and I generally do not to try to talk them out of their decisions, esp if they feel very strongly. I will explain possible risks, but NEVER EVER will I threaten them with the big C. This woman has been one of my most diligent clients, following up with each referral I passed on to her.. She self-injected BCG vaccines, Coley’s toxins, causing fevers and sweats, detoxed daily with coffee enemas, drank lotions and potions, traveled to see, among others, Dr. Block in Illinois, Dr. Brodie in Nevada, Dr. Chan in Vancouver, Dr. Munoz in Mexico, Dr. McClelland in San Diego, and Dr. Wilcox in Alabama. She took away information from each one and incorporated it into her own protocol. She had signed up for the Amazon list serve which has a huge following among alternative breast cancer patients. Julie worked really, really hard, to reduce her 6cm tumor burden in her breast, but the mass kept on growing and earlier in 2007 it approached 10 cm, and looked ready to burst out of her breast. She was coughing off and on from pleural effusion and had some bone involvement. I and others encouraged her to look into a course of low-dose chemotherapy with Dr. Ben Chue of the Seattle Cancer Treatment and Wellness Center. Julie turned herself inside and out to come to terms with the proposed poisonous therapy. She felt she had failed. However, she wanted to live and if her past experience taught her anything, she knew she had to be open-minded. She knew deep inside that you cannot go Straight when the Road Bends. She went through three courses of low-dose chemotherapy lasting 9 months! And it was not an easy road for her, her legs had edema, her feet turned purple from neuropathy, her energy and mood dropped upsettingly low. But no matter what, she continued everything she had been doing alternatively at the same time as her chemo protocol. She detoxed with coffee enemas, colonics, did high dose intravenous vitamin C once or twice a week, Meyers cocktails, hyperbaric oxygen therapy, sodium bicarbonate and more. One part of her, stayed true to what she believed in and it paid off. And Julie is now very much alive, her 10 inch tumor is gone and her cancer markers keep going down down and is now well within the normal range. She looks great, she has her courage again and she is my miracle woman! I love you Julie. Stand up Julie and lets give her a big applause! So the title of my talk is “Smart and Informed Self Medication”. How then can we be smart and informed about self medication? First of all you need to know you are not alone. There are quite of few of us who are doing it. There is support for you out there. Here are some guidelines to consider: Get educated and informed. Enlist services like CANHELP, CANCERDECISIONS, Annie Apple Seed Project, BreastCancerChoices, CancerMontly etc. Be aware that you may get overloaded. Don’t be afraid to ask for help from friends to research information. My cancer clients’ consumption of information varies widely. Don’t spend hours on the computer. Take your time to absorb the information and do not believe everything you read or hear. Take time to evaluate a new or proposed therapy. I try to approach each new therapy, conventional or unconventional, with an open mind. A new fad can hit the Internet and everyone is exited and wants to know where and how they can do it. There are always high-risk taking cancer people out there and they will be the first to jump in. I watch and listen and see what the overall results are. Often the fad is gone as fast as it has arrived. Find cancer advocates and coaches who do not work from the FEAR model, who can support you when you are unsure and confused. Don’t be afraid to switch when it looks like a therapy is failing. I tend to use 3 months as my critical marker, if the cancer is growing, switch. Remember there is always another bend in the road, when the present road peters out. Function in “Your Style of Risk” as Michael Lerner from Commonweal in Bolinas, Ca (where they have a wonderful cancer retreat program that I highly recommend) recently said at a conference I went to. There is no way to take risk out of the equation of cancer care. Some of us are high risk takers, some of us are low risk takers and others consider themselves “no risk” takers by playing it safe and follow the doctors‘ advice. However I seriously doubt there is such a thing as “no risk” with cancer treatments. If there was no risk we would not be dying of cancer, what was it, 550,000 people this year? Bottomline, don’t take anything for granted, not your life, not cancer treatments. Check in with your body regularly, find out of how your choice of treatment resonates with your heart. Don’t rely merely on pills, lotions and potions. Know that we have an internal capacity to heal and learn to trust your intuition. You know more than you think. Remember you have been programmed by our medical system to be powerless when it comes to cancer treatment choices. Monitor your progress no matter what you are doing. Get a doctor to order tests or discover how you can get diagnostic tests without a doctor such as CanaryClub, LEF, Zava labs etc. You can order up your own cancer blood markers! Find new ways to work towards equilibrium and wholeness. Do your best not to let your treatments run your life. Play music, draw, garden, walk, breathe deeply, and rest. I am sponsoring a teleconference at the end of this month on Spiritual PhytoEssencing with Dr. Bruce Berkowsky, who creates special blends that can facilitate this movement toward wholeness. I myself have known for years about Dr. berkowsky’s work from the time he worked with the late Dr. Aldrick Chu Fong, aqn oncologist from New York, but it wasn’t until recently that I learned the power of his blends and flower elixxirs. Go to my website http://www.canhelp.com and find out more about Dr. Berkowsky! To summarize, cancer is a process we learn to live with so hopefully we can one day live without it. Seeing it as a process of healing gives us tools as to how best cope with it. As in any process there is no right or wrong path laid out for us. Scientists do this all the time, they start with a hypothesis based on their best guesses and them move forward from that, if their hypothesis is proven wrong, they tinker with their initial hypothesis or abandon it for a new one, perhaps surprisingly different from the first path. Be aware that "we cannot go straight, when the road bends." Self medication may well an integral part of this journey towards healing. Thank you, Madeleen Herreshoff Call (800) 565-1732 email:[email protected] Over the past 20 years, CANHELP has reached out to thousands of people, helping them find the best alternative cancer therapies as well as innovative cancer therapies worldwide. ANNIEAPPLESEEDPROJECT LINK Can Help, Inc.LINK to site for Madeleen Herreshoff Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.

Comments

[alternative healing remedies]

It is refreshing to find that many people wish to become responsible for their own health and wellness. Finding out as much as we can about our bodies and particularly learning as much as we can about the difference between beneficial and harmful lifestyle choices we make will go a long way toward laying a firm foundation for health and wellness. Life is about choices and well informed women make the best choices for themselves.

[Cleo Pascal]

That's the best thing that I've learned today: self-education. If there's anyone who should know the most about our bodies, it has got to be ourselves. It was very brave of you to have come to several doctors in order to solicit information about alternative medicine. I guess it's not bad to try doing a holistic approach and not letting ourselves be limited with just one type of therapy.