Date: June 25, 2003
by Chaya Venkat
One recurrent theme in the considerable volume of mail we get at CLL Topics is the persistent interest expressed by patients in "alternative" medicine. There are, of course, some legitimate candidates are being examined in university and pharmacology labs and it is entirely possible that a few of them emerge from the scientific examination as agents that have value in cancer treatment or chemoprevention. But in the meantime, there is a steady stream of people quite willing to set up as cancer gurus, pushing miracle cures at a very vulnerable patient community. To make my assessment of this situation clear, I thought I would publish the following comments taken from an email I sent to a friend, since it spells out exactly what I think of quacks like Hulda Clark, Johanna Budwig and their "magic cures".
... sorry to tell you I do not think highly of Johanna Budwig. Her emphasis on Flax seed oil and cottage cheese would be fine with me, if she said they were good nutritional supplements, which they are. Flax seed oil is very rich in omega fatty oils, as is fish oil from cold water fish, and good for controlling unwanted weight loss problems in cancer patients. (Please see my recent article on "cachexia" or unwanted weight loss in cancer patients). Cottage cheese is high protein food, as is well known to most of us. But to claim that these food nutritional supplements somehow change the course of cancer, actually cure the disease, is extremely irresponsible. If you want to read more about these absurd claims, here is the link: Budwig. Any number of desperate people buy these completely unfounded claims and waste their money and precious time chasing after these snake oil claims, to the detriment of pursuing more realistic options. As for being nominated for the Nobel Peace Prize, I suppose anyone can be nominated, all it takes is one fan to do it. I doubt Budwig will ever get the Nobel Prize, no matter how often she is nominated.
I am a fan of the show "Law & Order". I watched a recent re-run episode, which involved the death of several breast cancer patients. A quack doctor prescribed them a potion concocted from various health food items, including ground up apricot pits (link: Laetrile), with the promise of a cure that does not need patients to make the hard choices of surgery, radiation or chemotherapy. A lot of the women die, a lot sooner and many more of them, than would have if they had availed themselves of more conventional therapies. The quack "doctor" gets tried for murder, successfully.
This is obviously fiction, but in my mind, not far from the truth. When I hear about Hulda Clark (http://www.drhuldaclark.org/) and her magic cures, Rife machines (Rife) and now, Johanna Budwig, I wonder how these people sleep at night, how they face themselves in the mirror in the morning, knowing the incredible harm they are doing, the large number of people they con into following their incredible claims.
As for homeopathy, my grandfather (mother's father) was a homeopathy doctor in India, way back in my childhood. Because of this connection, and because I grew up in India for the first 21 years of my life, I am quite familiar with the concepts and theories involved. I do not know of any serious homeopathy practitioner that claims it can cure cancers, caused by deep seated and very real genetic and chromosomal mutations. Like it or not, people, there is a physical reality to the basis of cancer, and it needs to be addressed in the real world, with real choices made based on solid clinical information. Are there drugs out there that we have not discovered yet, drugs based on herbs and the like used by ethnic practitioners of medicine? Very probably. Several of them, such as Genistein (from soy beans) and Curcumin (turmeric extract) and flavonols / catechins from green tea extracts are undergoing testing. Some of these may someday become incorporated as adjuvants to conventional drugs, or stand alone chemo-prevention drugs. Many of these are available in health food stores across the country. Some are relatively benign, some can be dangerous as hell. If you are inclined to experiment, here is a website that can help guide you a little, spell out the possible risks and rewards: Supplementwatch. Please be aware that many of these supplements have unexpected and dangerous interactions with other drugs you may be taking. You really should be checking with your doctor, bring to her/his attention all of the over-the-counter medications and supplements you are taking.
You may get a chuckle from some of the therapies that people have tried over the years to cure cancer. At least, I hope so!! Here is the website URL of the 'quackwatch' group: Quackwatch - Cancer.
It would be funny if it were not so heart-breaking. There should be a special hell for unscrupulous con-men that take advantage of desperate and frightened patients, looking for some way out, no matter how unlikely.
When I started this whole journey a little over a year ago, I was not a fan of the FDA, like many Americans I thought they were too slow in approving valuable new drugs. I must admit I have had quite a change of perspective since then. Yes, they are a slow and bureaucratic organization, but they perform a very necessary watchdog function.
I read a lot of technical articles that leave me seething with anger. You know that phrase, "lies, damn lies and then there is statistics"? You can make any drug look like the greatest new wonder, if you are less than honest in how you choose to report the data. All these researchers should take an oath to tell the truth, the whole truth and nothing but the truth, every time they publish something. I am sure the vast majority of researchers are honorable people who are not actively trying to mislead anyone, perhaps the worst they can be accused of is over enthusiasm for their pet theory that perhaps biases their perspective just a little. But there may also be the rare bad apple that has his/her eye on the billions of dollars to be made in health care business.
Obviously, it would be wonderful to have a lean, efficient FDA that can do its job without all the delays and bottlenecks. But sometimes it is good to have someone slow down the runaway train and ask questions, especially when it is headed in the wrong direction.
A friend has brought to my attention articles in the popular press on photodynamic therapy.
Photodynamic therapy is a pretty simple concept: a compound sensitive to light of a specific frequency (usually non-thermal red laser light) is injected into the body. In a perfect world, only the tumor cells absorb the compound, and when the laser light is shone on these cancer cells, in the presence of oxygen, a very reactive form of oxygen is created, which then destroys the cancer cell.
There are several limitations: first, the selectivity of the light sensitive compound is not very good, both tumor cells and normal cells absorb it. It is hoped that within a period of time the compound has cleared out (mostly) from the normal cells, but not the cancer cells, and that is the time to hit it with the laser light. This is not a perfect science, it is not easy to avoid killing non-cancerous cells completely.
This approach is used mostly with several varieties of skin cancer, as well as cancer of the throat and lungs, where the laser light can still be focused by means of special light conducting optical fibers. Light of the frequency we are talking about penetrates to a depth of little less than an inch and a half. Deep seated tumors, bone marrow, large lymph nodes etc will not be accessible to this approach as it is presently practiced, hence it is of little or no relevance to CLL patients.
The lack of satisfactory selectivity means there is a great deal of light sensitivity and patients have to be extremely careful to avoid sunlight for a while. The process is not without pain, and this also limits the surface area of the skin that can be treated at one time. The URL below gives the official description of the process and the two PubMed citations below talk about the pain involved in the process, as well as the inefficacy of photodynamic therapy for CLL.
I. Pain caused by photodynamic therapy of skin cancer.
Grapengiesser S, Ericson M.
Department of Experimental Physics, School of Physics and Engineering Physics, Chalmers University of Technology, Goteborg University, Sweden, Department of Dermatology, Sahlgrenska University Hospital, Goteborg University, Sweden.
Pain resulting from photodynamic therapy (PDT) of skin cancer was investigated. The study included 69 lesions (60 patients) with different types of skin tumours or precursors. Protoporphyrin IX, which is produced by the topical application of delta-aminolevulinic acid, was used as a photosensitizing agent. Twenty-three of the lesions (19 patients) were examined with a fluorescence imaging system which demarcates the tumour area from the healthy skin and visualizes the contrast between the fluorescence from healthy skin and that from the tumour. EMLA(R) is used on all patients as part of our routine PDT protocol but despite this the major side-effect of PDT is pain during treatment. There is a large variation in pain intensity experienced by the patients, as measured by a visual analogue scale (VAS). Patients with actinic keratoses experienced more pain than those with Bowen's disease or basal cell carcinoma. The mean VAS score was higher when treating lesions located on the head than when treating lesions on the torso or the extremities. Also, treatment of large skin areas resulted in more pain than treatment of small areas, and men experienced more pain than women. The pain experienced by the patients did not correlate with treatment dose, Fitzpatrick skin type, age or fluorescence intensity.
II. Inefficacy of extracorporeal photochemotherapy in the treatment of B-cell chronic lymphocytic leukemia: preliminary results.
Wieselthier JS, Rothstein TL, Yu TL, Anderson T, Japowicz MC, Koh HK.
Department of Dermatology, Boston University School of Medicine, MA
Because extracorporeal photopheresis has been shown to be clinically effective in Sezary syndrome, a disease characterized by a circulating malignant clone, we initiated a pilot study of its use in B-cell chronic lymphocytic leukemia (B-CLL) to see if it could be similarly effective. We treated three patients with Rai stage III and IV B-CLL with photopheresis (3 consecutive days a week every 3 weeks) and followed serial clinical and immunologic parameters. While we noted no major toxicity, there was neither clinical response to treatment nor marked improvement in white counts or mitogen assays. We conclude that photopheresis was not effective in inducing remission in this pilot study of advanced stage B-CLL patients.
Here is topic that raised interest and discussion and hopefully no takers: Mistletoe and Ozone therapy.
Before you go off to get Mistletoe therapy or Ozone therapy, I would like to bring a couple of respected sites to your attention. The first is the website of the National Center for Complementary and Alternative Medicine: NCCAM. This authoritative and comprehensive website is an important resource which tries to provide reliable information without a commercial product-peddling approach. The section titled Herbs at a Glance provides a good place for you to start your research in this area.
If you visit the Memorial Sloan-Kettering cancer information website, you can learn about unsafe herbs. In News and Alerts there are warnings and insights about some of the popular nutritional therapies out there. They have good things to say about green tea catechins, for example, and also about resveratrol from red wine, so they are not totally biased against nutraceuticals. Mistletoe is pretty toxic. I hope you will take this into your calculations before you embark on unproven therapies such as this.
As for the Ozone therapy, there is a lot about this particular fad on Quackwatch: Quackwatch on Ozone
I thought I would reproduce the full text of Dr. Barrett's article on "Miraculous Recoveries", just to remind us that there is a lot of hype and snake oil out there, it really pays to be a skeptic, ask questions first, before you put your body or your hard earned cash on the line. Incidentally, Quackwatch now has Coral Calcium as a hot item on its home page, check this out if you have been intrigued by the recent spate of posts on the ACOR list.
And folks, that is the end of discussion on mistletoe or ozone therapies. Period.
Stephen Barrett, M.D.
If you hear that an "alternative" method has produced "miraculous" recoveries from cancer, you should be skeptical. There are at least five reasons why such a report may be erroneous:
The patient never had cancer.
The cancer was cured or put into remission by proven therapy, but questionable therapy was also used and erroneously credited for the beneficial result.
The cancer is progressing but is erroneously represented as slowed or cured.
The patient represented as cured may have died as a result of the cancer or been lost to follow-up.
The patient had a spontaneous remission (very rare) or slow-growing cancer that was publicized as a cure.
Here are five examples of favorable reports that did not hold up when they were investigated.
During the 1980s, Anthony Sattilaro, M.D., wrote books and appeared on talk shows promoting macrobiotics as a cancer cure. In Recalled from Life (1982), he described how he had undergone conventional therapy for prostate cancer but credited macrobiotics for his improvement. In Living Well Naturally ( 1984), he said that his doctors had pronounced him in a state of permanent remission. However, he died of prostate cancer in 1989.
Lawrence Burton, Ph.D., who died in 1992, offered "immuno-augmentative therapy (IAT)" at his clinic in the Bahamas. Burton claimed that IAT would cure cancer patients by manipulating an immune defense system that he postulated. In 1979, CBS-TV's "60 Minutes" gave Burton a tremendous publicity boost when a prominent physician stated that one of his patients appeared to have recovered miraculously with Burton's treatment. Although the patient died twelve days after the program was shown, "60 Minutes" refused to inform viewers of this fact. In 1990, oncologist Wallace Sampson, M.D., analyzed a booklet of 35 case histories used to promote Burton's clinic. Sampson concluded that 30 had undergone standard or near-standard treatment and had a significant probability of living as long as was recorded in the booklet. The other vignettes lacked sufficient detail to make any judgment.
Stanislaw R. Burzynski, M.D., who operates a clinic in Houston, Texas, claims his "antineoplastons" can "normalize" cancer cells and have helped many people with cancer get well. In 1988, talk-show hostess Sally Jesse Raphael featured four "miracles" -- patients of Burzynski, who she said were cancer-free. All four stated stated that Burzynski had cured them when conventional methods had failed. Four years later "Inside Edition" investigated and reported that two of the four patients had died and a third was having a recurrence of her cancer. (The fourth patient had bladder cancer, which has a good prognosis.) The widow of one of Raphael's guests stated that her husband and five others from the same city had sought treatment after learning about Burzynski from a television broadcast-and that all had died of their disease.
Lucas Boeve, proprietor of a clinic in the Dominican Republic, claimed that ozone gas administered at his facility had cured cancer, AIDS, Alzheimer's disease, Parkinson's disease, arthritis and many other diseases, and that he provided an ozone machine that had cured "Magic" Johnson of AIDS. In 1994, the staff of NBC's "Dateline" took a responsible look at Boeve's activities by investigating all the cancer and AIDS patients on a list of success stories provided by Boeve. Of thirteen cancer patients: two had died; three could not be found; two refused to be interviewed; three were alive but still had cancer; and three said they had been helped, but their doctors said they were probably cancer-free before ozone therapy. Of two AIDS patients, one said he felt well but still was HIV positive, and the other had not been retested for HIV. "In all," a commentator concluded, "not one documented cure on Boeve's own list." In addition, Johnson's representatives said that he had had nothing to do with Boeve (or ozone therapy) and was still infected with the virus.
Beginning in 1995, Kathy Keeton, wife of Penthouse magazine publisher Bob Guccione, achieved widespread publicity with claims that hydrazine sulfate had cured her of stage IV metastatic cancer after doctors gave her only six weeks to live. However, she died of her disease in 1997. The five-year survival rate with stage IV breast cancer is 12-20%. A two-year survival is certainly not unusual.
I frequently get emails from members of CLL Topics, asking my opinion of specific herbs and the like. My response below was sent to one such request, regarding a mix of herbal components (Chinese) that had been used to self-medicate a CLL patient. I thought the comments might be of general interest, since many patients have expressed interest in the subject of Chinese herbal remedies in the past.
There are many medicinal herbs that could become valuable cancer drugs in the future. Traditional healing practices of Chinese (and Indian) peoples have employed some of these over many centuries. But until they have been rigorously tested in modern medical practice, it is hard to evaluate their usefulness, and equally importantly, understand their potential risks. You might get lucky by using such a risky strategy, but the odds are very high that you will cause serious damage instead.
Proving a substance has high apoptosis potential ex-vivo is not sufficient. Let me give you a relatively trivial example: ordinary mouthwash is sufficient to create high level of apoptosis in CLL cells in a test tube. Yet this is hardly considered sufficient to label mouthwash as an effective CLL therapy. The problem is that CLL cells in the human body thrive and survive as a result of the micro-environment within their immediate surroundings. They depend on a complex system of inter-cellular communication and cytokine based control and feedback loops, and the protective efforts of "nurse-like cells". Take away this nurturing environment and put them in a test tube or Petri-dish by themselves, and they die quite quickly, even without any help from medicinal herbs.
The second point is that enhancing apoptosis is not sufficient to reduce tumor burden. For example, many chemotherapy regimens fail because in the process of killing a small percentage of the cancer cells, the remainder of the cells are driven into an extremely effective defensive mode where they reject further attempts to kill them. This is the cause of "resistance" that is seen in many patients after initial exposure to some chemotherapy drugs. In some cases the resistance learned in one situation can quickly become cross-resistance to a broad spectrum of drugs. The other feature of development of resistance is that very often the cancer cells are stimulated to go into a higher rate of proliferation. I have discussed in several articles one of these pathways (NF-kB pathway) that is used by cancer cells to become resistant to cell-kill, as well as increase their proliferation rate. As you can see, even a drug that is successful in killing a percentage of the cancer cells initially can get you into real trouble if in the process of achieving that limited goal you also expose yourself to the risk of more resistant disease that is now harder to handle, and perhaps one that is now proliferating more rapidly.
Some of the medicinal herbs are quite powerful in their cytotoxic effects. What is less clearly understood is how they bring about cell-kill, and any assurance that the cell-kill is reasonably selective, killing only the cancer cells and not other normal cells. For example, there has been quite a bit of interest in a Chinese drug called Artemisinin. It is used presently as a drug to treat malaria. Its mode of action is to attack and kill cells with high levels of ferrous iron. It is generally accepted that cancer cells have higher levels of iron than normal cells of the same type, and that makes this herbal compound of interest in oncology. However, what is not usually understood by lay-persons is that red blood cells can also have high iron content, in the form of hemoglobin. Artemisinin has been reported to result in dangerously low red blood cell levels, needing emergency transfusions to prevent fatality. Without extensive toxicology studies, it is impossible to judge safe levels, or to account of individual differences in how patients respond to the same dose. Artemisinin is under scientific investigation. Someday, what researchers learn about this herb may make it possible to create new analogues of this compound that are both effective and safe. For now, it is quite risky to attempt self-medication with potent drugs such as this, especially without medical supervision and without knowing the exact nature of the herbal concoction.
There is also a chance that pre-treatment with herbal remedies may make subsequent "conventional" therapy less effective. Take a case in which CD20 expression is low. Was it always low, or was there a subtle change in the phenotype brought about as a result of the herbal therapy? You might never know in a specific case. What is known, however, is that many drugs and herbs have the ability to bring about changes in cancer phenotypes. Some are good changes, but some can be very dangerous. Again, trying an unknown herbal remedy with your eyes closed is taking a big risk.
It would be well to remember that CLL is a very complex and dangerous disease and it is very difficult to make a sensible evaluation of risks and rewards based on unknown and untested herbal remedies. You need expert medical help to deal with it and should not rely on self-medication strategies with unknown and untested herbal products.
As with everything else in life, pay attention to the source of your information and don't kid yourself about the motivations of anyone who wants to sell you something. Cancer is big business, with plenty of money to be made by the entrepreneur who has something to sell. It is entirely up to you to decide if that something has value to you.
We too, have something to sell (and not for money) — an objective, science-based evaluation of the options open to people burdened by this disease. We can only promote that if we have an educated customer - so we do our best to tell you about the science and the credible peer-reviewed research literature as it gets published. We hope our charter and motivations are clear. There is plenty of information on various parts of this website about who we are, what our goals are and how we pursue them. However, if you still have questions, we will be happy to answer them to the best of our abilities.
In our early days a member wrote to ask about my academic background and whether I am a CLL patient.
This is an absolutely legitimate question. I am glad he asked me, because hopefully that means you will ask others the same question before you buy their "cures".
I hold a doctorate degree in Chemistry and Education from the University of Michigan, Ann Arbor, and a masters in Chemical Engineering from Princeton University. I also hold 20 United States and worldwide patents, most of them relating to petrochemical manufacturing processes (I used to work for Mobil Oil Corporation as intellectual property manager before retiring in 2000). For details, see Chaya Venkat's Research Credentials. As I have written several times before, I have absolutely no background in the medical sciences. I consider myself just a healthy skeptic when it comes to things that sound too good to be true. The engineering and general science background helps me a lot in weeding out the really out-and-out junk, and it has also helped me come up the learning curve to some degree on the available therapies for CLL. It is a very complex field and I do not consider myself any kind of an expert, just someone struggling to find rational and trustworthy information. My bias is definitely towards the scientific and rational, I am not very good with mystical or non-definable aspects of cures. This article on quacks and snake oil cures refers to well documented con jobs making outrageous claims, not legitimate medical practices by any stretch of the imagination.
I am not a cancer patient myself. My husband of 32 years was diagnosed with CLL July of last year. That makes CLL my fight as well.
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Topic: Therapy Choices