Tuesday, October 28, 2014

Random Thoughts from the Patient Perspective

Listening to presentations by Integrative practitioners at the 11th meeting of the Society for Integrative Oncology I am struck with the vast differences between patients and providers (of any type).

Conferences are places to learn new techniques, discuss existing modalities, present data, visit with friends and network with new folks. All terrific activities. But even the language of scientific presentations create a barrier between presenters and their human research subjects. Stats, charts and special words abound.

But as a rude button I once owned stated: “This is your job, but it is MY LIFE”.

The urgency that a person with cancer feels from diagnosis until the rest of their life (some can let it go), is not reflected most of the time. In fact one slide showed that staff meetings are ‘celebrations, remembrances, and consults/presentations’. Oncology is such a difficult field precisely because we celebrate very little gains while sorrowing over the way too many losses.

Another slide shows a long list of dietary supplements that someone with cancer is taking. The room breaks out into laughter – it is absurd for a healthy person to imagine the desperation that fear brings. The dissatisfaction with available therapies, the constant pain in so many locations of the body, the fatigue that drags down spirits and is almost never-ending despite the many complementary therapies. By their very definition complementary therapies are meant to work with chemotherapy, radiation and the other available conventional treatments.

A person who chooses to take dietary supplements reads an article, feels like it might help. And indeed the contents of many of the capsules have been shown in cell culture, animal and small human studies to kill cancer cells. Should they speak to their conventional practitioner, s/he will not know enough to advise if it might be useful and will generally say “NO, don’t take that”, (partly because they don’t know (enough) about it and partially because not much is really known about any individual. Mainstream doctors, taught in the pharmaceutical mode, where absolutely every drug causes harms even as it may help mask symptoms, kill the cancer cells while killing too many normal cells, changing DNA, limiting joy in life – expect Level I studies of natural substances, even food. We heard that on day one from the mainstreamers who spoke- when asked by 2 different advocates where nutrition fit in, they had no meaningful response. And now we know our Integrative practitioners are getting a laugh out of our need to save ourselves from this dire fate.

As an almost twenty-two year breast cancer survivor who used 3 lumpectomies, a left mastectomy, a right mastectomy a year later, and then had chest wall recurrence on the left (only side with cancer), yet never took chemo, radiation or hormonal treatment, I didn’t WAIT for Level I studies. I charged forward using the stumble, bumble, fumble method most do. I got amazing results with much of what I did, yet no support from doctors along the way. That room filled with laughter made me feel too little has changed.

We are all an N of one. There is absolutely no guarantee that any treatment or combination of them will affect us in the way we most wish – to stop all cancer and to be ‘cured’. Do many of us ever feel ‘cured’. It’s the new C word.

Since the randomized multi-center clinical trials taught by Pharma, encouraged and discouraged by NCI and FDA at one and the same time, will probably NEVER be done, we need a NEW paradigm that can truly figure out what I, the unique individual with cancer, needs. It seems to me some modalities are closer to this truth than others. The existing system is corrupt and money-driven, we can all see that, yet are stuck in it. Insurance companies backed by BIG PHARMA, GE, Dupont and others, are really deciding what to bring forward to market. The patients and caring practitioners are not in that loop even if they ask us to serve on panels.

We’ve got to stop using language that harms – twice on day one I held up a sign: For Whom Treatment Failed (as two of the presenters talked about people FAILING their treatment). We all know that language matters – or we should.

We all know BIG PHARMA would be on natural substances in a New York minute if they could patent them – actually mentioned by an audience member. But whatever they would create would make a mockery of nature as they twist and turn the chemistry and the essence of it, it would end up toxic like all their other creations. Even food – the building blocks of our bodies – is kept out of the loop all too often. What’s the evidence for the ‘bland’ diet fed to those recovering from bone marrow transplantation?

The isolation of each individual field, understandable and not, is an additional problem. Many with cancer choose a variety of modalities, they need to. Isn’t that our basis for Integrative Oncology which must be clearly accepting, not laughing.

I urge you all not to laugh, but to dream bigger.

PS: Do you recall their used to be a list called Unconventional Therapies list? I often think of Dr. Emanuel Revici who practiced in New York City. He published a textbook of his work in April, 1961 and by June 1961 had been placed on this list? What Was the Evidence for Saying NO?

(Actually I had a chat with Helene Brown in 1995, a National board member of the American Cancer Society which had been involved with this list for decades). She told me a vague tale of ‘standards’ including not being part of a major institution, no one else doing the work, and it not sounding right. I am completely serious about this. Bottom line, there were no standards for judgment, certainly NOT scientific standards.

Was it proven that IV vitamin C drips didn’t work when an oral version was used? Was it proven that Hydrazine Sulfate didn’t work when participants were not told it was an MAO inhibitor that caused grave harms with many other classes of drugs?

Ann E. Fonfa, President, Annie Appleseed Project Delray Beach, FL – an all-volunteer nonprofit
www.annieappleseedproject.org (561) 749 0084 annieappleseedpr@aol.com
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