Friday, November 2, 2018

Complimentary V. Alternative Medicine: Yes, It's Different ...

First some definitions and then, a few thoughts.

Combining in such a way as to enhance or emphasize the qualities of each other or another.

Combining two or more things to form an effective unit or system.

Based on or in accordance with what is generally done and believed.

Relating to activities that depart from or challenge traditional norms.

Quite simplistically, Words Matter.

Quite personally speaking, we know what has been shown to be effective and we continue to seek better medications to treat the multitude of diseases that fall under the cancer umbrella. There is only one departure from conventional therapy that I believe in and that is participation in an approved clinical trial. Period. End of story. I am in the school of "Snake Oil Not Welcomed Here." That's my disclosure on my personal beliefs.

Last week, I was invited to attend the annual meeting for the Society of Integrative Oncology. The MD's and PhD's from world renowned cancer centers that presented their findings did so using the same scientific methods and with the same caveats that I've seen in presentations at meetings like AACR or the San Antonio Breast Cancer Symposium. The presentations from the podium in the sessions I attended were all randomized trials with control groups. Limitations of each study were clearly outlined. Many of the studies were designed using small groups of people. In almost, or possibly in every case, it was stated that the studies were exploratory in nature and that further studies using larger groups of people would be needed to confirm the findings or replicate the results. That's the way we learn in the world of science. Confirmation and replication are key components and each is essential to guide changes in practices.

Cancer treatment is grueling. Chemotherapy is poison. Radiation burns through tissue. Surgery cuts into our bodies. As we move toward precision medicine, plenty of therapies are more targeted for different patient populations but the promise of precision medicine for every cancer patient is still beyond our grasp. Specialized treatments like immunotherapy which are highly effective in certain sub-types of specific cancers like melanoma and lung cancer, have been shown to be highly effective in many, but in some, there may be serious complications with the treatment. Just listen to the television commercials, there's no shortage of those.

While in active treatment, many people suffer with debilitating side effects. Well beyond active treatment, many of us live with long term or late effects of the treatments we received with the hope of achieving the status of no evidence of disease. It is worthy to note that few treatments are truly curative and the word cure applies to even fewer cancer types. When a researcher states that the patients were treated with curative intent, that is simply a means of differentiating the stage of the cancer in the group of patients on the study.

Most of us have already gotten the memo on the importance of maintaining a healthy diet, the need for exercise, and the importance of sleep to help restore our bodies. Not enough of us, myself included, are able to stick to every aspect of each of these cornerstones but, speaking personally, I try. Not one presentation at this meeting even hinted at the notion that diet, exercise or sleep could prevent primary disease or stop progression of active disease, or prevent local or distant recurrences. No one I spoke with suggested, in any way, shape or form, that we use complementary therapies instead of conventional treatment.

The focus of the use of complementary therapies was as a means of assisting with quality of life issues experienced by so many of us. They were presented as a possible option to make our conventional treatments easier to tolerate allowing us to continue treatment for as long as recommended, or as a way of dealing with long term and late effects. Yes, acupuncture was presented in several of the sessions. Mind-body connections using yoga or other meditative methods was explored and presented. Any and every time, nutritional supplements were mentioned, caveats were included to clearly state that some could negatively impact the efficacy of conventional therapy and that every one brought up by a patient receiving any sort of active treatment should be thoroughly investigated by the treatment team to properly guide the patient.

It is particularly noteworthy to mention that in the studies I saw presented, the researchers showed not only patient reported outcomes using validated measures, but they also showed physiological changes in the things in our bodies that are believed to be driving some of what ails us. Without getting all science-y, the slides showed the same patients that reported symptom reduction in whatever was being looked at, a corresponding slide was presented to show, for example, a reduction in systemic inflammation within the body. Inflmmation is known to cause all sorts of problems.

Other physiological changes were reported and genetic markers were identified in different studies but rather than speak too far above my pay grade, it's best to leave that right there. Yes, that is a gross oversimplification but I am not an MD or a PhD. The point is this: they were able to measure and show a biological change in the body that correlated with what patients were reporting. As a patient interested in the preservation of quality of life in every cancer patient, along the entire disease trajectory, I was impressed by the comparison of what was being reported, the "real-world evidence" alongside biologically measurable observations.

Yet, I'm left with many questions. Why is there such a push-back from so many? Is it a lack of understanding, or the unwillingness to be open-minded about what this group of researchers is trying to accomplish. To disrupt the status quo with "unproven" and non-pharmacological approaches is, by many, referred to a quackery. I saw nothing that resembled quackery. I saw researchers sharing observations and I also saw some of the studies raised further questions worth exploring.

In one yoga study of particular interest to me given my issues with chemobrain, the findings seemed to indicate restorative yoga was a better option than yoga that included more movement. Again, during the presentation, the researcher very clearly outlined that the patients in this study were mostly sedintary breast cancer patients so the findings only applied to this particular subset of patients. AND, they observed that the quality of sleep in the group assigned to restorative yoga was significantly better leading to the statement that the slightly improved cognitive assessments in this group could be resulting from better sleep, not necessarily from the yoga practice, ending with, "more research must be done to answer the question."

In fact, the only thing that was suggested as a possible alternative to existing treatment was a session on pain management and reducing the use of opiods. Given the crisis with opiods, any alternative treatment that might prove effective, in my way of thinking, is a winning combination for a large number of people and addresses what has become a health crisis.

As I was writing this, I saw that ASCO released the results of their second annual National Cancer Opinion Survey and it's very disheartening. According to the press release, nearly 4 in ten Americans believe cancer can be "cured" solely using alternative therapies like enzymes and oxygen therapy, or with diet, exercise, vitamins and minerals. I haven't had the chance to read the entire report but I will. I'm not a fan of press releases. I'd rather read the methods and conclusions as written by those analyzing the findings. The publication is available for anyone to access.

The cure is not in a closet. There are plenty of nefarious characters out there, preying on people at what is likely the most vulnerable time in their lives, promising a cure using some outlandish treatment. Just. Don't. As for the so-called success stories touted by that cast of characters? The biology of cancer is complex and miracle cures, in my mind, could easily be explained as disease that was not aggressive or likely would never have killed the person to begin with. That's my position and that will remain my position, unless and until I am pointed to rigorous trials showing these "miraculous" outcomes in large cohorts of patients.

Bottom line: complementary care is not the same as alternative medicine. The acronym CAM (Complimentary and Alternative Medicine) is best replaced with CIM. Complementary Integrative Medicine seeks to help make conventional treatments more tolerable, enabling patients to finish full courses of therapy with the goal of helping us achieve the best possible outcomes using currently available, already proven to be effective conventional treatments. Alternative Medicine, for this patient and research advocate means unproven, and steer clear.

I just wish that those who so openly and unabashedly attack this entire area of medicine might begin to think a bit outside of the box and realize, patients matter. Management of side-effects matters. In this era patient-centered care, incorporating patient concerns and identifying as many ways as possible to address the concerns of patients is essential to achieve true and meaningful patient-centricity. It's not a buzzword. It's a call to action for both patients and providers, and it seems to me there is a large group of researchers answering that rallying cry. To those, I say thank you. To the detractors, I just make one respectful request. Don't lump everything into one bucket. Those who are researching complimentary care to help with quality of life fully and totally stand behind conventional treatments.

It's time for all of us to get on the same page.

If the words are troubling, attack the words ... not the methods or the outcomes or the questions being posed.

Note: I am closing the comments on this post because this seems to be a highly charged area and I'm not up for moderating the comments or getting into a debate. These are simply my observations. With utmost respect to all, please ... just take what resonates and leave the rest.

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