Reaction to ‘When Alternative Cancer Care Kills’

The response to my recent post, “When Alternative Cancer Care Kills” was fast and passionate.

People either loved it or hated it, depending on where they stand on cancer care. Those firmly entrenched within the alternative (in lieu of conventional cancer care) camp were taken aback, while adherers of an evidence-informed integrative oncology approach gave the essay high marks.

Interestingly, to date, four people have unsubscribed from my list after receiving the post. That’s a good sign that the thousands of people in this community seem to appreciate a civil, open dialogue on such an important subject.

While it would be difficult to write individual thoughtful responses for each piece of mail or social media reaction received during the past several days, I will endeavor to respond to a couple reader comments that fit in the ‘disillusioned’ category. And I issue a blanket thank you to all responders, from the generous kudos to the profound consternation. Information and exchange of thoughts are key to comprehending the complexities of cancer care.

But first…

I like discussing ‘prevention’ a whole lot more than ‘treatment’.

Much cancer, north of fifty percent, can and should be prevented altogether.

Prevention is the only so-called magic bullet ‘cure’ against many types of malignancy. (Click to Tweet)

Prevention is less costly—in treasure and lives—and more effective than cancer treatment.  The real travesty? Though cancer deaths are falling precipitously, the inconvenient truth is that we are, more than ever, creating malignancy that requires treatment. (Alas, I find myself writing about treatment.)

What we desperately need is a cancer ‘prevention’ moonshot—a brand of prevention that goes way beyond the government’s current definition of the intervention.  Any initiative that does not go significantly beyond early detection, vaccines, and smoking cessation programs, is halfhearted at best and will not dramatically bend the cancer trajectory.

In the meantime, cancer is all around us and many of those affected will need to be treated. ‘Treatment’ must extend beyond the active conventional treatment period.  After-cancer care management must address recovery, and long-term survival: durable remissions and sustained periods free of disease progression.

It is not an overstatement to say that my family has been significantly and disproportionately affected by the insidious grip of cancer.

Of the five people comprising my nuclear family, every single one of us has had cancer.

Eight different cancer types between us. Staggering: eight.

Everyone except me has undergone standard care. A couple of us have incorporated a comprehensive integrative health approach. Gratefully, everyone is still alive as of this writing.

I have witnessed my share of friends, colleagues, and clients I’ve coached valiantly navigate a cancer diagnosis and the deleterious side effects that conventional cancer therapy often brings. Many have died from the disease.

I’ve heard from numerous people, including cancer patients, caretakers, health advocates, academic and private medical oncologists, integrative oncologists, and scientists, who have been incredibly supportive of both the tone and balanced approach of my essay.

I do want to address a couple commenters, who have passionately questioned my motives and their perception of my ‘flip-flops’.

Rick from San Diego, CA wrote:

This article serves no one but Big Pharma.

The devastation I’ve seen over the past 40 years of people being poisoned, burnt alive, and cut to pieces will be looked back on in future generations as the dark ages of medical care—using leeches and blood-letting makes far more sense than the average oncologist’s approach.

Stop drinking their Kool-Aid and continue to inform people about clear alternative choices.

This was really disappointing.

Dear Rick,

I do not disagree: future generations will look at our current conventional cancer care, with few exceptions, as an invasive, often indiscriminate, buckshot-like approach, especially where chemotherapy is involved.

No Kool-Aid drinking over here, just my usual green tea and filtered water. The thing is, I am excited about the potential of precision medicine.

Some incredibly innovative scientists within ‘Big Pharma’ and the top cancer institutions are moving at light speed to develop a new generation of predictive testing, targeted therapies and immunotherapies that will, over the coming decade or two, render useless much of the chemotherapy products (and other chemical therapies) that have been used for a half-century.

Enjoying this article? Subscribe so you don’t miss the next one. We’ll also send an excerpt from Glenn’s book, n of 1.

Fourteen years after decoding the human genome, we are just now seeing the fruits of this undertaking, with advanced genetic and genomic testing and various assays used to inform more precise cancer treatment. Several of these products and interventions are available today. Many impressive agents are in the pipeline. More and more patients will have access to these discoveries over time. But it is still quite early.

One example of profound innovation is the recent FDA-approved CAR-T gene therapy—the first gene therapy approved in the U.S., for difficult  acute lymphoblastic leukemia (ALL) cases, the most common form of leukemia that affects so many children. It will soon be tested on a number of additional cancer types.

Rick, none of this existed just a few years ago. ‘Conventional’ cancer care is undergoing a rapid transformation—an evolution that portends greater advancement in the coming five to ten years than has been achieved over the last half century.

But all this does not mean lifestyle and viable integrative approaches are not more important than ever for all cancer patients to understand, have access to, and implement into their treatment and survivorship care plan.

The study of natural products and ‘alternative’ approaches continues, but lags behind. Financial support remains extremely low because of the limitations in commercializing such products.

Because of the financial disincentives of studying natural product and alternative approaches, it is critical to capture exceptional responder patient stories—also known as radical remissions—with quality case reports that are peer-reviewed, published, and indexed in PubMed. My essay included links to specific resources so that folks can get involved.

Finally, I am a huge proponent and well-documented user of natural products. I am also quite intrigued by a number of natural products and interventions to augment conventional cancer care. These include mistletoe therapy (standard care in parts of Europe); whole body hyperthermia (again, used commonly in Europe); high-dose vitamin C; low-dose naltrexone; low-dose aspirin (derived from willow bark); mushrooms; metformin (derived from French lilac); intermittent fasting; and ketogenic diet.

Several of these agents and interventions are showing incredible promise to treat, control, or prevent cancer. Will any of these augment standard care as an adjuvant, or possibly become the new standard care themselves? We don’t know because, of course, these things all need additional study.

I am not suggesting that some of these things cannot now be carefully integrated into standard care. If they are known to be safe, well-tolerated, do not pose contraindications with standard care, show some level of efficacy an individual is comfortable with, and  can afford… then go for it. Just make sure to communicate with an experienced integrative cancer practitioner—ideally the entire oncology team—to manage this process. And vitally, be certain to record the outcomes.

It is incredibly important for cases such as mine to be properly recorded clinically, written up as case reports, peer-reviewed, published and indexed in the medical literature. This is how we move the needle for all cancer patients and survivors to, one day, benefit from these findings.

Cathy from Lansing, MI commented:

What is this email today?

Are you suddenly thinking everyone else should do conventional therapies?!

Taking poison when you are sick is just simply illogical. I watched my friend Sharon undergo radiation and chemotherapy which neither healed her cancer nor extended her life—it just made her horribly sick.

On her deathbed she said she wished she never had done chemotherapy and had instead used her remaining time to spend it with her boys instead of vomiting constantly.

I was diagnosed with chronic lymphocytic leukemia (CLL) this past February. I will have to be literally at death’s door before I consider chemo. The two oncologists I have had so far have been worthless. I have two goals: survival and quality of life. Those things are not on the radar of conventional oncologists—their only task is to monitor the blood until you reach “chemo time”.

I am on my own and I am doing everything in my power to improve my health, and be proactive. And unless you were not truthful in your book, your situation was not one that did not require immediate therapy. Your flip-flop is disturbing.

Dear Kathy,

I am very sorry to hear about your friend’s experience, and to also learn that you are dealing with a CLL diagnosis.

The treatment of cancer requires a profoundly personal decision-making process. I absolutely agree that preserving quality of life and achieving long-term survival should always be the two cornerstone factors to consider.

Unfortunately, with few exceptions, we do not have enough predictive tests to know who, with some types of early stage disease, will benefit most from treatments such as chemotherapy. The NCCN clinical guidelines that most oncologists follow offer standard of care guidance based on large studies.

In the case of your friend, I don’t know the details of her disease, prognosis, or lifestyle or support system prior to and during her treatment; nor do I know whether or not she was able to get a second opinion at a major academic center before submitting to therapy.

There are lots of variables to consider—some of which may have improved the management and symptom control of her treatment, increased her quality of life and/or resulted in a better clinical outcome.

Would your friend have had a better quality of life and perhaps even lived longer without any treatment whatsoever? This is also possible, but impossible to know with certainty.

What I do know is that earlier stage disease—that has been shown repeatedly, in large studies, to respond very well to standard care delivered with curative intent—is the bet I would place for myself.

To respond to your own situation, so as to offer clarity and up-to-date information, my disease, like yours—CLL—did not have a curative (or truly sustainable) option when I was diagnosed (1991). When I became sick in 2003, not much had changed since my original diagnosis, in terms of treatment options.

So, I refused chemotherapy in 2003 for the reasons elucidated here, and continued forward with the lifestyle measures and additional interventions—my informal N-of-1 experiment—as outlined in the clinical case report and shared in my book. I am grateful to have experienced remarkable outcomes without conventional drug therapy.

If you are not happy with your hematologist, locate another with whom you feel more comfortable, and then let your current one go. Hopefully you can identify someone with expertise in your particular disease. And if you cannot locate an integrative oncologist, then hold onto your new, skilled, and empathetic (hopefully) ‘conventional’ hematologist, and augment this care with sensible lifestyle changes to improve your overall health.

In any case, it is important not to have unrealistic expectations for your ‘conventional’ hematologist/oncologist, as I share here.

I am unaware of what you have been told in terms of treatment options should you need to be treated for CLL. There are several subtypes of CLL that indicate the likely course the disease will take. There are prognostication tests that should be done with all CLL patients.

Newly approved first-line therapeutic regimens for several types of CLL do not include chemotherapy at all. Tyrosine-kinase inhibitors are targeted therapies that typically have low side effects and remarkable responses with CLL patients.  There are a number of treatments in the pipeline that are light years ahead of the choices I had back in 1991, 2003, and 2009 when I was facing tough decisions with my own disease.

In my opinion, The CLL Society website is the best resource on the web for those with CLL. The organization’s founder, Brian Koffman, MD, is a CLL survivor. From the latest research to evolving treatment approaches, drug pipeline, glossary of terms and definitions, you will find good value on this site.

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The core takeaways on “When Alternative Cancer Care Kills” may have been difficult for some to digest. Here they are, summarized:

  • Regardless of the chosen ‘alternatives’, if they are used to supplant conventional care for an otherwise highly curable disease, the unnecessary risk could result in premature death.
  • If the choice is made: alternative care over standard care for highly curable disease, then work with an oncologist to monitor and measure the outcomes of this approach using appropriate tests specific to the disease. This can allow for a quicker change of treatment plan, if necessary.
  • If remarkable outcomes are experienced with alternative cancer treatment, or through an integrative approach combining alternative and standard care, work with a practitioner and the academic community, to properly collect all data (retrospectively) and publish that case.
  • Always work closely with a well-qualified, seasoned integrative cancer physician to guide the treatment plan or maintenance program. Also inform the conventional oncologist of all that is being done, so that there is proper documentation (even if not necessarily supported or endorsed).