Q&A with BCCT

LP: I suggest starting by taking a look at our Diagnostic Approaches summary, specifically at the part on chemosensitivity testing where we list sources of such testing. I think your best bet is to get in touch with one of the companies we list and they can tell you what's involved. I reached out to a BCCT colleague in Canada and she provided some additional information specific to Canada:

The short answer is that there are no labs in Canada doing chemosensitivity testing so specimens (tissue and/or blood) need to be sent to other labs. The key is to find a doctor or naturopath that embraces and understands the different tests available, and can arrange for either tumour sample or blood to be provided for analysis.

The Centre for Advanced Medicine in Whitby, Ontario, has healthcare professionals that can provide a consult and arrange for chemosensitivity/genetic testing. For testing of conventional and natural therapeutics, the RGCC lab (also referred to as the Greek test because the lab is in Greece) is the most used/trusted that I am aware of.

Another avenue that might be worth pursuing is an on-going clinical trial by the British Columbia Cancer Agency. This trial is focused on personalized onco-genomics (POG), effectively sequencing the full genome of the patient's tumour to identify potential targets. Although the description says it is limited to patients being treated in British Columbia, I have heard that they are/will be opening it up to national and potentially international patients, so worth talking to the oncologist about eligibility.

ML: Welcome to one of the core ethical and legal dilemmas of integrative cancer care. First, none of us working on BCCT will ever recommend that you do anything illegal. Second, the dilemma you face is an ancient one. Does your friend have the ethical right to do what he chooses to do with his own body? Does the state have an absolute interest in interfering with that right? Do you have an ethical obligation to help your friend? Do you choose to commit an act of civil disobedience in support of your friend’s putative ethical right?

Here is the great English philosopher John Stuart Mill’s view of this subject:

On Liberty is one of the most important, and widely-read, articulations of liberal philosophy in the history of political thought. The single object of the essay, writes Mill, is to assert the principle that “The only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant…. Over himself, over his own body and mind, the individual is sovereign.” Mill thus disqualifies other reasons that are often used to justify interference with individual liberty. The harm principle excludes paternalism, or constraining an individual’s freedom for the sake of what one believes to be that individual’s own benefit. Instead, Mill argues that each individual should be able to decide what constitutes his or her own good and how he or she will pursue it. Similarly, actions cannot properly be constrained on the grounds that they will cause offense, rather than harm, to other people. My own interests and possible offense to others may provide me with reasons to persuade someone else to select one course of action over another, but they cannot justify coercion..¹

You are considering obtaining a plant medicine that has been found beneficial from time immemorial. That plant medicine is again legal in a growing number of US states, but illegal in your state. Your ethical purpose is helping your friend exercise his fundamental right—according to John Stuart Mill—to decide what to do with his own body if in so doing he does no harm to others. Note that this right is not absolute. In the case of childhood vaccinations, the calculus of harm to others from failure to vaccinate children is, for example, infinitely more complex. This same calculus of diverse claims of interest in personal intention, ethics, and the law is widely applicable to other integrative cancer therapies. We won’t seek to resolve these questions, but to clarify their claims on you and your friend.

ML: You’ve asked the big question—and upped the ante on the question from our previous guest about obtaining cannabis-based CBD for his friend. While cannabis for therapeutic and recreational use is rapidly becoming legal in the US, psychedelics are far behind and the penalties are more severe. Yet tens of thousands of people use MDMA—or ecstasy—as a party drug every year, and use of psilocybin and ayuhuasca are widespread as well. What are your choices?

One question is how seriously enforced these stringent laws are—clearly, not very stringently in most jurisdictions. A second question, given their illegality, is how people obtain pure and not adulterated substances. And a third question, if you decide to proceed, is how seriously you take the strong evidence that “set and setting” matter immensely to the experience. Some people believe that a very experienced guide is needed. Others believe that a sane and grounded friend can safely act as a “sitter” for such an experience.

We should recognize that ayuhuasca is a far more challenging experience than MDMA and psilocybin for most people. In that case, an experienced guide seems even more necessary. In our experience, people differ remarkably not only in their appraisal of the ethical and legal questions you are asking, but also in their interest in undertaking such a journey. You may want to see a related patient story: Ayahuasca and Cancer: One Man's Experience.

So a primary question is whether your wife is as drawn to this as you appear to be. If she shares your sense that this experience would be valuable, and if you can satisfy yourself regarding accessing pure substances and having a sufficiently experienced guide, then your dilemma is the same one that John Stuart Mill addressed and that I quoted for the previous guest. If this journey (for it is a journey) is unlikely to harm others, and unlikely to harm either of you, then you must balance your respect for the law with your sense of whether choosing what to do with your own body is a profound ethical principle. It would involve an act of civil disobedience. No one else can make that decision for you.

Participating in a clinical trial or research study may be an option:

• Clinicaltrials.gov from the US National Library of Medicine: studies of psychedelics and cancer
• Johns Hopkins Center for Psychedelic and Consciousness Research
• California Institute of Integral Studies Center for Psychedelic Therapies and Research

Ram Dass has a great quote about psychedelics. He says that cannabis use should require a driver’s license but psychedelics should require a pilot’s license. I agree. These are very powerful medicines. Their highest and best use is for sacred and life-changing experiences.

NH: Our therapy search box does not allow users to search therapies at that level of detail, but we offer these suggestions for getting more information.

First, you can try using the search box in the upper right of each page to find which pages include information on your specific condition, in this case "chronic lymphocytic leukemia" (including the quotation marks will search for that exact phrase and not just any of the words in the phrase).

We suggest that you look at the protocols and plans mentioned on the Leukemia page to see if any are specific to CLL. Several of the protocols and plans we highlight are published in books that may be available at your local library and as e-books.

We have a link on our Leukemia page (in the Cancer & Side Effects section) with more information about CLL. We'll be building out and adding to the Leukemia page in the coming months, but unfortunately we don't have much for you right now.

If you find information that you find useful, we invite you to post it on the Leukemia page so that others may benefit from your research. Over time, information from our community will become an additional resource for all.

LP: I have worked with many people with cancer who have thought that "more is better" when deciding on complementary therapies, including natural products/supplements.

Though it makes sense to integrate a variety of therapies and lifestyle practices, the key is to choose therapies that will complement each other, will target your particular terrain and tumor microenvironment, will not interfere with nor increase toxicity of conventional treatments, and fit your goals. When thinking about natural products and supplements, these points are important:

1. Although these products may be "natural" and tend to have fewer body-wide effects than drugs, supplements and other natural products can have side effects and be toxic in some doses or when taken for long periods of time.
2. Some people may be allergic to ingredients in some products.
3. Some natural products can affect absorption of other herbs and drugs.
4. Some may affect enzymes in the liver that are used to detoxify and clear drugs and other substances from the body. As a result the amount of active drug in the system can be increased, raising the risk of drug side effects and toxicity. The effects of other herbs and drugs could also be blocked or diminished. Paying attention to interactions is important.
5. In the US, the quality of natural products and supplements is not well regulated. Some products have been found to be tainted with drugs or with toxic metals and other chemicals. Some supplements are poor quality and may not contain any of the natural product claimed. Some filler materials may not be listed on labels, so anticipating how these will interact with other products is nearly impossible. See the BCCT summary on Quality and Sources of Herbs, Supplements and Other Natural Products.
6. The more substances taken into your body, whether drugs, natural products or a combination, the bigger the chemical load on your body's detoxification system.

For these reasons and more, we strongly urge you to seek guidance from a licensed provider who can help you choose the natural products and supplements that are right for you and will most likely safely complement your conventional therapy.

NH: Please see our Turkey Tail Mushroom summary. We cannot tell you if this therapy will help you, but read the information carefully, see if you think it appliess to your situation, and then share the information with your healthcare team for their opinion. The research behind turkey tail mushroom is among the strongest we've seen for natural products. We wish you well.

LP: Thank-you for inquiring about Turkey Tail Mushroom. Please see the BCCT summary on Turkey Tail Mushroom. BCCT does not recommend specific brands or dosages of natural products. However, if you go to the Commentary section of the turkey tail summary, you will see information from Dr. Lise Alschuler, naturopathic oncologist, on what to look for in terms of quality and quantity of turkey tail mushroom. She explains that "The key is to use a hot water extract of the fruiting bodies or a full-spectrum extract (includes mycelium) that clearly identifies on its label the quantity of mushroom extract. She goes on to list some blends of mushroom extracts that she often recommends. I hope this is helpful.

LP: Please see the answer above.

NH: We hear your concern and request for a decision. However, we cannot provide medical advice. We encourage you to share the Turkey Tail Mushroom summary with your medical team and explore your questions with them. They know your full medical situation and will be able to assess whether turkey tail can provide therapeutic benefits for you. If you do not have an integrative medical team, please consult our Centers, Clinics and Clinicians page for guidance on assembling a team. Best wishes to you.

NH: We are not able to give specific medical advice. We recommend you ask your oncologist about using LDN or to refer you and your son to someone who has expertise in using LDN with conditions comparable to your son's. If you're not able to get information that way, try looking at sources listed on our Centers, Clinics and Clinicians page, You may want to print relevant parts of our LDN summary or refer to the books in the Integrative Programs, Protocols and Medical Systems section on this page for guidance to share with your oncology team.

We wish you and your son peace and healing as you continue your investigations.

LP: In addition to Nancy's suggestion, I would also point out a section of one of the LDN resources that tells you how you might obtain LDN.: www.lowdosenaltrexone.org. On the home page, scroll down to the section called "How can I obtain LDN and what will it cost?" When you talk with your son's doctor about LDN, you can give him/her the information in this section. Wishing you clarity in exploring the best care for your son.

NH: BCCT is not able to recommend specific doses, but you and your physician may be able to get information about doses in the studies described on our Low-dose Naltrexone page. The LDN Book that we reference in the summary gives specific dosing guidelines in Appendix B: Frequently asked questions about LDN. We recommend sharing the LDN summary with the physician who has prescribed LDN for you. Together, you and she or he may want to adjust your dose.

Best wishes, and please let us know of your results.

LP: Thank you for asking this question. I see that there was a news story in 2019 of a man who used this anti-helminthic (anti-worm) veterinary drug for lung cancer. He was able to order the drug online.

In searching the scientific literature about this drug, I found only preclinical studies—with cancer cells or animals—using fenbendazole or its formulation for human use, menbendazole. Study results suggest these drugs have anticancer effects and may enhance the effects of conventional cancer treatment. However, I found no completed, published studies in humans. Menbendazole is being tested in very early stage clinical trials, mostly trying to determine the maximum safe dose and investigating anticancer effects. These clinical trials involve patients with colorectal cancer or adult and pediatric brain cancer.

Before using a drug off-label (outside FDA approved use), most physicians will want to see evidence of safety and effectiveness in treating cancer in humans, particularly in randomized, controlled clinical trials. We're not to that point with menbendazole.

Further information:

• Mebendazole as a candidate for drug repurposing in oncology: an extensive review of current literature. Cancers (Basel). 2019 Sep; 11(9): 1284. 
• ClinicalTrials.gov: Mebendazole in newly diagnosed high-grade glioma patients receiving temozolomide (mebendazole)

I hope this is helpful.

NH: We are grateful for your input. Intermittent fasting is included in our "Other planned diets and metabolic therapies" list as a high priority. Please look for that in the coming weeks.

ML: This is a tremendous concern. Many of these therapies are expensive. But some of the most powerful ones are accessible to anyone who has the time and energy to explore them. Our 7 Healing Practices are eating well, moving more, managing stress, sleeping well, creating a healing environment, sharing love and support, and exploring what matters now. They aren’t free in terms of time. Some of them bring ancillary expenses with them, such as opting for nutrient-dense vegetables and fruits instead of cheaper processed foods. But many involve no financial cost.

Yoga, meditation, qigong, tai chi and other practices can be learned inexpensively—free online videos are available for many practices. Having a trained in-person leader is especially beneficial for novices, but if finances limit even that access, the online options can help.

We are as concerned with inequity in access to life-saving conventional therapies as we are about inequities in integrative therapies. Integrative therapies are generally far less costly than conventional therapies. A caring society would provide access to both. A more equitable society would lower health risks for everyone across the income spectrum.

BCCT staff: Also see these resources for information about medication recycling

• Remedichain: Donated Medication for Those Who Would Not Otherwise Afford It
• National Conference of State Legislatures: State Prescription Drug Return, Reuse and Recycling Laws
• Good Shepherd Pharmacy in Memphis. Tennessee

NH: Have you looked at our Multiple Myeloma page? We don't have a lot of information yet about integrative approaches, but we do post links to information from the National Cancer Institute and CancerNet about conventional treatments, plus clinical practice guidelines from the National Comprehensive Cancer Network and the American Society of Clinical Oncology. You'll also find links to two integrative protocols from sources we have vetted. We hope these resources will give you a good foundation to discuss with your oncologist.

Please let us know how your research progresses.

NH: Please visit our Breast Cancer page.

ML: Fair question. It is one thing to address integrative cancer therapies for informed adults. It is quite another to assess them for children. It is not that integrative cancer therapies are not relevant for children. The issue is the heavy burden of responsibility that treatment of childhood cancers represents for both practitioners of conventional and integrative therapies. We’re just not ready to go there— yet. Its hard enough to get integrative therapies right for informed and consenting adults. We wish your son well—and his son—and your whole family.

LP: A database called KNOW Oncology is a dynamic clinical and educational tool that provides summaries of up-to-date research in integrative oncology. KNOW is adding summaries of integrative therapies with research evidence in pediatric cancers. You must be a member of OncANP (Oncology Association of Naturopathic Physicians) to access the summaries. An allied member category allows any licensed health care providers or biomedical researchers (and not just licensed naturopaths) to pay the membership fee and get access to this tool.

NH: First, take a few deep breaths. Clear your mind and calm your nerves. Trying to find and understand new information while you're panicked doesn't work well.

Then, take a look at these places, but take them one at a time. Don't feel like you have to get through this all at once. Take a "bite" of a manageable amount of information. Read what you find thoughtfully. Consider it carefully. Read it 2 or 3 times until you feel you understand what's there. You might want to look into the studies located in the footnotes, or you might leave that for a later time. When you feel ready for a new piece, come back and read some more.

Start with our Cervical Cancer page. We don't have much there yet, but you will find information about conventional treatments, a good review article about integrative approaches, and some published protocols to investigate.

Another time, look through our therapy summaries, You can search for therapies found effective in cervical cancer by selecting it from the Cancer Types: Benefit list in the search box on the left. See if any of those therapies interest you. Again, take this in small doses.

Take information that you find helpful to your medical team to see what your best options might be. If you need to find a medical professional with an integrative approach to add to your team, you might review our Centers, Clinics and Clinicians page. If you're outside the United States, look especially at the Other Guidance section toward the bottom of that page.

Best wishes in finding guidance on addressing your needs and moving forward with your health and wellness.

ML: Broadly speaking, I wouldn’t try to change your mother’s mind. I often get these questions. It is your mother’s cancer and your mother’s life. If you really want to help her in meaningful ways, ask her—or intuit—how you could truly be most useful. Love is the greatest healing force.

Spending meaningful time with your mother may matter far more to her than trying to convince her to eat an organic plant-based diet. Moreover, the evidence for life extension with intensive health promotion practices is not strong enough at this point to warrant an exceptional effort. Also, the effort it takes—to engage in an effective program of diet, stress reduction, exercise and finding a good support group—is very significant. Your mother isn’t drawn to it. That said, there may be specific interventions that don’t require great lifestyle changes and might interest your mother. The evidence on CBD products (cannabis) for anxiety and pain is one example. My core belief is that it is best to support your mother in what she chooses to do as long as it is not actively harmful.

NH: We list a few training providers on our For Healthcare Professionals page. I suggest you review these for opportunities and options. We'd appreciate your feedback on these or other opportunities if you'd like to share.

NH: The Commonweal Cancer Help Program is open to the public, although there are costs to attend. Other retreat centers with similar programs are listed in the gray Partners box on the Commonweal Cancer-related Programs page.

LP: Thank you for contacting BCCT about getting treatment in Mexico.

BCCT does not recommend any treatment centers or providers. We share some basic information about centers that we know to have good reputations, but we encourage all patients to carefully research any treatment options.

We currently do not have any information to share about specific treatment centers in Mexico. However, we looked for reputable resources to help guide your search and found these candidates. We offer this information to help you start your own research.

Alternative cancer treatment clinics from Cancer Research UK: look especially at the last section, A word of caution. 

BCCT thinks that one of the most objective guides on the Mexican Clinics are in Ralph Moss' Moss Reports. The reports are pricey, but provide a lot more information than just about clinics. Moss updates his reports regularly, so there's a better chance that what he says is more current than what will be in many of the books on this topic. 

A book, Hoping for a Cure: Alternative Cancer Treatment in Mexico (Note: Ralph Moss wrote a favorable review of this book; this book is 2018, so fairly current)

Please refer to these BCCT pages for more general guidance, not specific to Mexico:

• Which Options Best Suit You?
• Integrative Approaches to Treatment: Introduction
• The Spectrum of Integrative Cancer Therapies
• Questions for Your Care Providers (and Yourself)

I hope this is a helpful start. We wish you the best in finding the right clinic and clinician.

NH: You may find local or online support programs for people with brain cancer through the sites listed in the section on Advocacy and Support Groups on our Brain, Spine and Nervous System Cancers page.

Also see The Healing Circles Learning Community.

NH: BCCT does not charge for our services, as we want this information to be available to all our readers. We would accept a donation in gratitude, but access to information is not currently contingent on any payment.

NH: Thank you for reaching out to us. We don't offer integrative cancer programs—only information about them. Please see these pages on our website for information about programs for you to investigate:

• Centers, Clinics and Clinicians (we'll be adding many more centers to this page in the coming weeks)
• Integrative Programs and Protocols
• This page offers guidance on how to select and build an integrative cancer care team: Questions for Your Care Providers (and Yourself)

Best wishes to you.