Karl: I was wondering if you could share with the group any alternative treatments or clinics that you've tried, if any worked or didn't work, and what your observations were?
There are many reasons why I was not prepared to objectively evaluate medical claims when my spouse was first diagnosed with follicular lymphoma. The first, being I had no formal medical or scientific training.
I didn't get off to a good start either. I bought into the conspiracy theory described in a book called "Options." Coincidently, a neighbor gave us this book when Joanne was first diagnosed in 1996. It planted mistrust in the medical system - in the so-called "chemotherapy concession." I began to look at alternative medicines in earnest.
Instead of watchful waiting, "we" decided to try Burzynski's antineoplastons, mainly because we talked to patients who said it helped them. Some said they were cured. Burzynski also said he could cure Joanne. A non-toxic therapy that can cure! How could we not try that? Which illustrates my second deficit: I did not understand that testimonials are not evidence.
A second reason we chose Burzynski, it was one of the alternative protocols listed as potentially useful by Dr. Ralph Moss, PhD, in a personalized Moss report we purchased. It's worth noting that Dr. Moss's background and degree was not in medicine.
A third skill is knowing what you do not know. I lacked this too. Burzynski peptide theory seemed plausible to me, and I had an arrogance that I was able to recognize good and bad theories about treatments for cancer. After all, I spent many *months* reading up on it! And since the Options book made it very clear that the medical establishment could not be trusted, I had better take this on myself.
The event that began to slowly awaken me was Joanne's medical crisis. The necessity to treat with CHOP to deal with fast progression in 1997. Joanne's brain was in a fog from 10 months on the 24-hour pump infusion of Buryzinski's peptides (which smelled like urine). Although she had a 30% response* at one point (or was it?), the lymphoma began to progress rapidly and was now bulky. New nodes were appearing almost daily. When "we" finally went off study, the gallium scan lit up like a Christmas tree. I recall that the liver involvement scared me the most.
* We can anticipate that the temporary response to antineoplastons is being cited by others as "evidence" that this therapy works, ignoring what happened later ( the transient nature of the response), and that indolent lymphomas will wax and wane spontaneously.
Thankfully, CHOP therapy put the lymphoma into remission, even at this advanced stage. Clearly, without effective standard medicine she would have died... and so, with our crisis, my firm belief in the conspiracy theory began to erode.
Unfortunately, the remission from CHOP was short lived, perhaps a cost of delaying treatment. Thankfully the biopsy indicated the lymphoma was still indolent.
But I was not yet a convert to evidence-based medicine. Slow learner. Believing myself capable of doing my own research (I still did not know what I did not know), I spent perhaps thousands of hours reviewing the literature for promising natural compounds. My research led to trying many alternative practices during my spouse's short remission, and for a short time after her relapse.
Still she progressed. Again, she started her next standard treatment, Rituximab, with bulky disease - that is to say, at a disadvantage.
For indolent lymphomas the *variable* natural history of the disease could easily account for the outcomes reported in testimonials. This is the context that we *must use* to more objectively review study reports and testimonials. It's documented that some people with fNHL have never needed treatment. Others need it quickly. Recently, evidence from gene profiling research (LLMP) has shown that fNHL is not one disease, but at least four diseases affecting the same cell type. ...
It's estimated from clinical records that ~70% of people with indolent lymphomas have a truly indolent course, and that 30% will regress spontaneously. The jargon for the underlying variability of a disease is heterogeneity. Follicular lymphoma is a heterogeneous disease.
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So I think it follows that if 100 people with follicular lymphoma tried alternative strategies, 70 could easily *feel* that it's helping, and 30 would be absolutely convinced. Testimonials would soon follow. But the same results would be expected from use of a placebo, or if you followed any group of 100 patients with the same diagnosis.
Eventually, I gave up hunting for leads on natural approaches, but it was not because of our negative personal experience, or because the light went on about what it takes to know if an intervention is really helping ...
.. the bright light came on when I learned that in vitro (cell culture) experiments are unreliable as sources of evidence. The literature is littered with articles on the anti-cancer activity of natural compounds in test tube experiments. The problem is that cancer cells are no more like themselves when removed from the body than a fish is itself in soda water. ...
And this serious limitation of in vitro "evidence" is compounded by the second hurdle, which is bioavailability: it is many times not feasible to take the oral dose needed to reach levels in the blood that showed activity in cell culture experiments. Often the body changes, or merely excretes, the active compounds.
The promise of natural medicine gets even thinner when you examine the track record. The odds of success is roughly 1 in 5,000 that any compound showing activity in assays will win marketing approval (PHRMA report).
So for all of these reasons I think we are better served by first discussing with our doctors the efficacy of standard therapies, which can be curative and/or highly effective for many types of lymphoma.
If standard therapies are not optimal or effective, we can seek expert advice on participating in trials testing new agents that have reached at least phase I *clinical-phase* testing. That is, human testing. The compounds don't get this far without having shown activity and some evidence of activity in assays and animal models. Here the odds of reaching the market (being clinically useful - the benefits outweigh risks) improve to about 1 in 10.
(However, even when a study reaches clinical phase testing, the investigators have an obligation to report their findings in a timely manner (and to our knowledge Burzynski has never published outcome data on lymphoma) - this to allow for peer review and planning for continuation or discontinuation of the protocol for the indication. )
We all want to believe that a non-toxic, "natural" way to treat lymphomas is out there somewhere. It's a myth that natural compounds are ignored by researchers and the pharmaceutical industry. Vincristine to name just one. There is an NCI department of Natural Products, which is dedicated to this work.
The conspiracy theory raises the level and urgency of our personal pursuit to find natural medicines; it leads to reliance on untrained persons to find the way. The people who take the lead are sometimes sincere and intelligent, but this does not make them correct. A signal of their inner doubt, I think, is a reluctance to publish or share their ideas with professional scientists for review, and the tendency to form CLOSED like-minded groups that will rarely discuss other perspectives.
The conspiracy theory does not hold up to scrutiny. It can't address the 80% cure rate of childhood cancers with standard chemotherapy; or the fact that everyone gets cancer, including researchers, doctors, regulators ... and their children. Or that a conspiracy would require the complicity of the parents of children with cancer.
It's a myth that natural medicines are kept from us to protect the profits of the industry. The profits are a necessary driver of the research. Patent law was designed to make the risky path of drug development worth trying. Most often they fail, and lose incredible sums of money. Only a few new compounds make it through the independent FDA review process.
Yes, the drug industry has a bias - a clear profit motive. Yes, the industry is prone to overstating the benefits of a drug and will be happy if it's products are used for new indications, even if not fully tested. This is why the role of FDA is vital, and why we need patients to participate in the development and review of best practice guidelines.
I know that belief in the "evidence" supporting natural medicine can provide comfort. However, *strong belief* in unproven therapies can do harm if a person delays, or avoids, proven treatments because of it. Further, to maintain such belief can require that we abstain from using our critical judgment ... on how to evaluate medical claims and recognize information that is weakly supported. What is evidence? Why does it matter?
The appeal of alternative medicine is understandable, particularly for cancers that have no effective treatments, but it's a red herring. There are many more promising directions in clinical research to review and consider - plausible ideas that account for levels of the compound in the blood - that are monitored for activity and side effects by trained scientists and investigators.
We might better exercise our energy and apply our intelligence to advocate for standardized bio-banks and advanced testing to identify new targets and biomarkers that may predict response to therapy. We might routinely consider participation in clinical trials ... We might inform the industry about obstacles to trial participation, or help to increase investments in cancer research.