David and I began looking into cancer therapies four years ago after David's mother was diagnosed with lymphoma. We pursued it further when my mother was diagnosed with Hodgkins Disease two years later. When Hans Burkhardt, Eleanor Lewallen and Judi Bari were diagnosed with cancer this last summer and fall, the intermittent flow of articles, books, newsletters and anecdotes on the treatment of cancer and other degenerative diseases into our community of family and friends became a flood.
During last November and December, David, Donna D'Terra and I agreed to be the recipients of some of this material, to review it and to at least keep it all in one place. Hans Burkhardt has also been exploring cancer therapies with his usual thoroughness and brilliance. Others have come forward to offer their experience in cancer therapy research. The WEC (Willits Environmental Center) and the MEC are planning to build a library of these materials so that we won't always have to start from zero when confronted with a cancer diagnosis or other serious illness. We hope to build on the experience of others who have explored non-toxic therapies.
The following is what David and I have learned. We offer this information as an opening into the vast, complex, ever-changing and slippery world of emerging cancer therapies. We do not claim expertise! We simply want to share our experience.
We began our search based on a chance radio news snippet. We learned that in San Francisco there is a medical library open to the public called Planetree Health Library. You can go there and conduct your own research or, for $100, the staff will prepare a personalized packet of current medical and health literature and computer printouts specific to your diagnosis. You need to give them an exact description of the disease; for example, stage IV non-Hodgkins lymphoma, small cell, with the primary tumor site in the lung. The packet is presented in layman's language, includes full journal articles, alternative therapies and any other specific information you request. For $35, Planetree will send abstracts on the latest research in allopathic therapies. This information comes from Med-line and the National Library of Medicine data base. (You can also get this information free by calling 1-800-4Cancer and asking for the Physicians Desk Query Fact Sheets.) The value of this information is that it puts you on a par with what your allopath knows about current treatments. You are then in a better position to evaluate claims of effectiveness of conventional chemotherapy and radiation treatments. In the case of David's mother, the articles received from Planetree which discussed chemotherapy treatment for relapsed lymphoma clearly showed a dismal rate of remission. Had David's parents been properly informed by the oncologist, they might well have chosen an alternative route instead of a second, and what turned out to be, lethal course of chemotherapy.
When reviewing journal abstracts and/or scientific articles you may need the assistance of someone with a medical or scientific background to help put some of the technical jargon into layman's language. For example, a "positive response" means that the chemical killed cancer cells, but it may also mean the patient succombed as well; something the researchers may have failed to notice.
Planetree Health Library is at 2040 Webster Street (at Sacramento St.), San Francisco. The phone # is (415) 923-3680, or 923-3681. Their hours are Tuesday through Saturday, 11 am to 5 pm, and Wednesday 11 am to 7 pm.
In Mendocino County we have our own mini planetree in the person of Sara O'Donnel. Sara has a service called Mendocino Cancer Resource Center, (707) 937-3833. She stays abreast of the latest cancer therapies, both conventional and non-conventional. She helps cancer patients and their families and friends investigate promising therapies, and if appropriate, will be your guide and advocate in pursuing a therapy.
Tui McCarthy, of Willits (459-4213), is also knowledgable about various cancer therapies and has for several years guided and supported cancer patients through treatments of their choice. And also in Mendocino County, Gini Reynolds, of Redwood Valley (485-0902), offers a support group for cancer patients.
David and I subscribe to Dr. Julian Whitaker's Health and Healing newsletter. Though it sometimes seems too quick to jump on the latest "miracle cure" bandwagon, we feel that it offers many valuable non-toxic therapies. In the Supplement to the February '95 issue, several cancer therapy research services were listed. The followng two we have used and found useful: Canhelp Inc., at 3111 Paradise Bay Rd., Port Ludlow, WA 98365, (360) 437-2291, Fax (360) 437-2272, is run by Patrick MacGrady, a respected medical writer (and former Newsweek bureau chief in Moscow) and author of The Pritikin Program for Diet and Exercise. He now spends his time researching therapies and visiting clinics to assess the effectiveness of their treatments. You can send Canhelp a copy of your medical records and for about $400 you will receive a description of therapies MacGrady feels are most promising for your condition. MacGrady is available to answer your questions as well.
Healing Choices, at 144 John's Place, Brooklyn, NY, 11217, (718) 636-4433, fax (718) 636-0186, is a similar referral service run by Ralph Moss, PhD, a well known science writer, author of The Cancer Industry, Cancer Therapy, and The Cancer Chronicles Newsletter. In this case, you call to request a questionaire which you then fill out and return with about $250 and Moss will send you a detailed report on treatment options and respond to any follow-up questions.
The Health and Healing supplement also lists Alternative Therapy Program, People Against Cancer ("Who's for cancer", my mother wondered?) at P.O. Box 10, Otho, Iowa, 50569, (515) 972-4444, fax (515) 972-4415. Though they claimed to offer a similar personalized service, I found their respone to be too general to be of much use. However, they may be worth another try. The cost is about $250. Also included in the supplement is the Foundation for the Advancement in Cancer Treatment, Box 1242, Old Chelsea Station, NY, NY, 10113, (212) 741-2790, and The Center for Advancement in Cancer Education, Wynnewood, PA, 19096 (610) 642-4810. Both these organizations offer cancer treatment counseling free of charge. I didn't contact either of these organizations so have no personal experience with them. All of the above information is from 1995, so some of the particulars may have changed since then, notably the cost.
There are many books out on alternative and conventional cancer therapies. Three that I am familiar with are Options, by Richard Walters, Cancer Therapy, by Ralph Moss, and Choices in Healing, by Michael Lerner. Like the personalized referral services, these books inform you of a wide array of treatments, the theories behind them, the practitioners involved, some case histories, and addresses and phone numbers for further inquiry. Most book stores will have some or all of these and doubtless many more.
The above inquiries, though, are only the first step. For example, the Canhelp packet my mother received described 10 therapies that Patrick MacGrady felt were worth investigating further. (When seeking advice from several sources, some therapies will emerge as promising simply because they are recommended by several people and organizations.) You need to investigate individual therapies on your own. The following are questions you should ask once you have the doctor, the practitioner, or the clinic on the phone:
1. Have you treated people with (your diagnosis)? What have been your results? Would you give me the name and phone numbers of some of your patients who would be willing to talk to me about their experieces?
2. Would you send me some literature describing this therapy?
3. What are the side effects of this therapy?
4. What is your educational background and your professional experience?
5. Have you published the results of your work, and could you send me, or refer me to your published materials?
6. What does the treatment cost? What is your payment schedule? Will most medical insurance cover this treatment?
The responses should be candid and courteous. If they are not, it could mean the treatment is a hoax. It might also mean the practitioner is operating alone, on a shoestring, and in an atmosphere of ridicule from his or her peers and profession and is sick and tired of defending his or her work. So be relaxed and open yourself.
Deciding whether or not you have found a therapy "solid" enough on which to spend precious time, money, and physical strength is the biggest hurdle. My mother chose the traditional six months of chemotherapy without much serious thought to alternatives; but because of severe arteriosclerosis in her leg, surgery was not an option and conventional medicine offered no treatment. She began chelation treatments simultaneously, along with the chemotherapy. After three months of chemotherapy she had lost 30 pounds, was wasting away, and shook like a leaf with the slightest exertion. Her chelation therapist began giving her alternate doses of I.V. vitamin B and C supplements. She temporarily stopped the chemotherapy, regained her strength and several months later resumed the final two courses of chemotherapy. A year and a half later, she is leading an active and healthy life. My mother attributes her surviving the chemotherapy to the I.V. nutritional supplements.
David's mother also chose to treat her cancer with chemotherapy, snd tolerated it very well initially. Her lymphoma was put into remission for a full year. When the cancer returned she again chose chemotherapy, but this time the results were not positive. At that point she went to the Livingston clinic in San Diego, where she was treated with vaccine therapy, I.V., Vitamin C, and a diet and nutritional supplement regimen. All the time she continued to take chemotherapy orally. David's mother died within a year from a raging cancer that had become immune to the chemotherapy drugs. David and I feel that this second course of chemotherapy bordered on mal-practice, as the doctors must have known, (though they were never candid with David's parents) about the dissmal statistics on reversing relapsed lymphoma with chemotherapy. The Livingston protocol seemed to boost Marcia's energy levels but clearly the effectiveness of this treatment could not be continued as long as she continued the chemotherapy.
It is very difficult to turn one's back on what most people are doing (even if it's crazy!) and strike out on one's own into a realm of medicine that is indeed ancient in some respects, but also just emerging. Like conventional medicine, "alternative" medicine is a world rife with unscrupulous practitioners preying on people's desparation. It's hard enough to be a sleuth, to kindle a sense of adventure and to make life-altering decisions when one is well, much less when one is sick and frightened! That's of course why we need to help each other. But the reward for taking this risky step is in finding a compassionate advisor, a brilliant reseacher, a practitioner who believes in the body's ability to heal itself and has a thorough knowledge of treatments and the skill to apply them.
I recently received a call from a man claiming fabulous results from a cutting-edge vaccine therapy administered by a group of doctors in Tiajuana, Mex. This man seemed well schooled in the theory of the treatment, and knowledgeable about the credentials of the doctors administering it. He urged me to call Suzanna Hennig, a volunteer promoter of this therapy, who is helping to organize and incorporate this group of physicians so that they would be in a position to begin FDA trials of several of their anti-cancer vaccines in the U.S.A. I called Suzanna. She was knowledgeable, very generous with her time and seemed realistic about the difficulty of arresting stage IV breast cancer metastized to the liver. She understood the need to act quickly and was willing to arrange accomodations and transportation in Tiajuana. She referred to the doctors and researchers by name and noted their credentials. She also mentioned that she had recently talked to Patrick MacGrady of the Canhelp cancer research service about this vaccine therapy. I decided to ask Patrick MacGrady what he thought. After all, sorting truth from fiction was his life's work.
He responded to my question about Suzanna Hennig's claims in a single word..."Incredible!"... I waited for more. Silence, then again, "Incredible!" I began to form another question when he interrupted, "Incredible. No printed material. No journal articles on their research. Too good to be true." I protested, "But, she told me some of their anti-aids vaccines are in the final stages of trials in England and they expect excellent results when the reports are made public in early '97." MacGrady responded, "I'll wait 'til then to judge their claims."
I hung up rather discouraged. The treatment sounded so promising...another bubble burst? Another snake oil hukster, or just an honest effort leading nowhere? Perhaps; but the notion that cancer is caused by an organism treatable with a vaccine is neither new, nor outlandish. I'll keep Suzanna Hennig's phone number (I wonder if MacGrady is keeping it?) That path may not be a dead end. I saw Tui McCarthy today. She mentioned seeing a new book by John Robbins whiich contained some impressive statistics on putting liver cancer into remission with vaccine therapy.
We invite anyone with experience negotiating this maze of cancer therapies to contribute the next chapter to the MEC newsletter.
Copyright Mendocino Environmental Center 1997
Permission granted to excerpt or use this article if source is cited