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
Find us on Facebook, Twitter @annieappleseed

Tuesday, August 5, 2014

Discussing the decision NOT to recommend vit D screening nationwide.

(prompting some thoughts on FREE LUNCH)

"The benefits of vitamin D, at least to bone, are clear. Beyond debating the numeric definition of vitamin D deficiency and seeking additional potential benefits of vitamin D sufficiency, future research should address how to promote moderate exposure to the sun and healthful eating habits and increase compliance with vitamin D supplementation. Before considering ordering a 25-hydroxyvitamin D test, clinicians should ask themselves why a patient may have vitamin D deficiency in the first place and take the opportunity to promote a healthful lifestyle. Clinicians also should assess whether the patient will be compliant with vitamin D supplementation and how to increase that compliance. Without changes in lifestyle or compliance with long-term supplementation, a short duration of vitamin D "sufficiency" maintained by high doses of vitamin D does not warrant screening for vitamin D deficiency in most patients."
   (MY emphasis above)

Many doctors lack time to read studies  -  probably getting their news from titles of studies or headlines, which we know don't often correspond to content.  With less knowledge they generally follow the 'instructions' of the companies they have known - remember most of the doctors in practice today went to medical school at the time (stopped only recently).  Here are some articles on that CONFLICT of INTEREST.

Additionally current screening is about disease DISCOVERY even though it is often referred to as 'Prevention'.  Taking vit D3 on a national scale , would be TRUE prevention and that is not in step with the goals of our consumerism-oriented society.  To be fair, any new concept takes an extremely long time to enter our medical system so this one will be kicked around for perhaps another TWENTY years before it is well understood.  Still many studies have shown those diagnosed with cancer have low levels of vit D3.  It is not yet clear if this is a cause.  Buy many of us who follow an Integrative health program - using (mostly) Organic food, being physically active, reducing stress (learning to deal with it better), detoxing, and taking dietary supplements, generally will add vit D3 if needed.  I certainly did.

To protect yourself, get tested by your primary care doc for vit D3 levels.  Build yourself back up and STAY with it.  Keep it at an excellent level for your health.  Do get a bit of sun everyday - 15 minutes for those in the North and 5 minutes for Southerners.

Thursday, July 31, 2014

First do no harms – Integrating complementary therapies into cancer care

For years advocates and patients have been concerned over the short and long-term adverse effects caused by conventional treatment. Even in this era of consecutive chemotherapies designed to reduce toxicities, we are still experiencing them. Using a muga scan to examine the heart before certain treatments works to discover who already has heart weakness ,but speaks not at all to those who will develop it. Similarly with neuropathy, once developed, it is extremely damaging and not under control. We suggest the use of certain natural supplements which in a variety of studies seem to enhance chemo treatments and may reduce the risks of many of the adverse effects suffered by the human being behind the cancer. This is of grave concern to our advocacy organization. Examples abound of substances that are GRAS. A study on fish oil (Omega-3) in mice indicated it was synergistic with doxorubicin and slowed tumor growth without increasing toxicity. A variety of studies point to its value in cachexia, and some believe it shows promise as an anti angiogenic agent. Curcumin has been shown to affect 9 pathways in the body – it is able to induce glutathione S-transferase activity. When combined with piperine (black pepper) its value is mightily enhanced. It may work equally well in ER+ or ER- breast cancer cells. It has demonstrated an ability to inhibit the enzyme ornithine decarboxylase (ODC), and curcumin preferentially arrests cancer cells in the G2/S phase of the cell cycle. A study in mice demonstrated that turmeric/curcumin may protect cancer patients from the burns and blisters suffered as adverse effects of radiation therapy. This same paper, presented in 2002 suggested that the benefit of RTx is enhanced as well. Topically applied tea may reduce radiation burns per a study from UCLA reported in 2006. L-theanine, an amino acid, has been shown to enhance doxirubicin's cancer killing effects, while protecting normal cells. Many studies indicate bnefit from the addition of vit D – this is being studied in several labs now. One study indicated enhancement of paclitaxel through the addition of vit D analogues. The vitamin D3 analog, ILX-23-7553, enhances the response to Adriamycin and irradiation in MCF-7 breast tumor cells. Also in vitro, both tumorigenicity and metastatic ability decreased after addition of N-acetylcysteine or selenium (from a 2001 study). Quercetin, a flavinoid molecule, has in vitro and some preliminary animal and human data indicate it inhibits tumor growth, as well as having little toxicity (2000). Quercetin has been used to enhance hyperthermia as well. B12 among other B vitamins has been shown to inhibit tumor cell growth in MC7 cells. A 2002 study showed (in rats) that supplementation of a niacin-adequate, high quality diet with pharmacologic levels of nicotinic acid or nicotinamide increases NAD+ and poly(ADP-ribose) levels in bone marrow and may be protective against DNA damage. CoQ10 is finally being studied as cardio-protective in a human trial right now. Alpha lipoic acid and glutathione have been indicated as helpful for prevention/reduction of neuropathy. These and many other natural substances, mostly GRAS, call out for more study and inclusion in our treatment protocols. They are likely not toxic and in a system where drugs of great toxicity are routinely given, it just makes sense.

Fish oil http://s406515300.onlinehome.us/30fisoilconi.html
Curcumin http://s406515300.onlinehome.us/cursupefonhu.html

Integrative Oncology from the Patient Advocate Perspective

As a 20+ year survivor I sought to find, then offer, information on natural cancer strategies.  At first I needed them for my own cancer protocol, then to help others.

Integrative Oncology refers to the simple, natural and non-toxic approaches that can reduce toxicity, possibly enhance the efficacy of conventional treatment, and create feelings of well-being and control in people dealing with cancer.
Many studies, some from long ago, have pointed to the strong patient interest in Integrative Oncology (formerly known as CAM).  Yet the professional oncology community’s knowledge has failed to keep up.

Trained to seek Level 1 studies, they have failed to note the preponderance of all the other evidence available supporting natural approaches. Due to cost, most natural products/substances are not reviewed at Level 1 and probably will never be.

We’ve created a simple program we call 3 Steps 4 Health which offers anyone in cancer treatment a guide to improved health.  We will present the research that backs up these simple ideas that can be incorporated into anyone’s protocol.

We also have a Handout to Reduce Toxicities (also a Pediatric version) that is evidence-based to help with those adverse effects that plague modern cancer patients.  So many suffer from neuropathy – there are quite a few methods to protect or treat this with complementary therapies that can be integrated into conventional treatment.  ASCO has pointed to the value of Yoga, of Ginger and more natural approaches but oncology professionals have been slow to adopt or recommend.

Ann E. Fonfa, Annie Appleseed Project, Delray Beach, FL USA

Obstacles to CAM for minority communities to healthy foods and supplements

Obstacles and solutions for minority communities to healthy foods and supplements, gyms and healthy care products. Princetta Scott and Ann Fonfa, The Annie Appleseed Project, Delray Beach, FL

There are a variety of obstacles that make it difficult for people living in minority communities to adopt healthier lifestyles despite their desire to do so.  These include few health food stores or shops that carry fresh produce or supplements.  Very little access to gyms, few ‘safe’ places to run in the streets or parks to play outdoors in.
Some minority neighborhoods have been shown to have more fast food restaurants and bars than any other type of food establishment.  Prices for fresh produce may be higher in these communities.

Some solutions include joining a walking or running group (be the organizer if this does not exist in your area yet). Joining or creating a food coop, reaching out to local/organic farmers to suggest a market day.  Visit with local nonprofits to suggest they fund or run these projects.

Ask local stores to host a food market or coop.

(photo shows the authors in Lisbon, Portugal with a poster)