Is it true that “any press is good press”?? Gosh, I hope so. Read on to see why…

 

Supplements During Cancer: Help or Hype? BY LAURA BEIL

In the latest edition of CURE Magazine, Laura Beil examines the question of whether or not the use of supplements and nutraceuticals during cancer treatment are helpful or all hype.  I sat down with her a few months ago to discuss their role in my own journey—which included back-to-back bone marrow transplants—and in my healing and miracle comeback.

I was initially elated about the opportunity to shine a light on one of the key elements behind my unexpected triumph over a less than one percent chance of survival, and why I feel I was able to begin running again just two months after my second transplant when the doctors said I would feel I’d have to “rest” after just getting out of the shower—among other things.  I was excited and grateful for the opportunity to share this cutting-edge resource with the very people who have or will find themselves on a common path and would benefit from this information.  I know how thirsty I was in the beginning of my own cancer journey for information and resources that would help to pave a way through my very uncertain circumstances and how hard I had to work to find them when I looked and found none.

As the article mentioned, with my background in both medicine and nutrition, it is something I’ve always been passionate about.  The power of what we put into our bodies—that I witnessed first-hand in my own journey—has become a personal mission to share with others as it’s a virtually untapped resource that can make a ENORMOUS difference in the final outcome.  So I was disappointed when I read the article and learned a hard, but important, lesson in the power of editorial bias and how an author’s predetermined filter can skew information.   What had been presented to me as an balanced, journalist-type examination into the pros and cons of the use of nutraceuticals as a new complementary field in cancer care, I was to realize later that the final opinion had already been determined—long before I entered the picture.

I was saddened by what clearly seems a missed opportunity to present the facts and latest research so that patients can weigh for themselves what is best, begin a conversation with their doctors about their options and seek out a professional in the area of nutraceuticals and cancer care.  The article unfortunately spoke more to the fear of the unknown than educating patients as to their options.  This is, in fact, a perfect example of how deeply ingrained the old patterns of thinking are that I myself had to contend with and overcome.   Let me just say this:  The days of “Doctor heal me” are over.  In order to prevail in today’s world of cancer treatments we, the patients, must be actively engaged in our care and be our own advocates in setting up a team in order to triumph.  But as with any shifting of a paradigm, any challenge to the status quo, there is resistance initially with a lot of talk of all the reasons why it should stay the same, in the “safety” of the known.   Just as Columbus was told he was headed for certain death as he headed boldly toward the edge of the known world,  the fear of the unknown can keep us from moving forward unless we are brave enough to dare to explore “outside the box”.

What wasn’t mentioned in the CURE article was the key fact that I worked very closely with a PhD nutritionist who is a thought leader in using food and nutraceuticals to mitigate the toxic side effects of chemo and radiation that she calls the “Oncometabolic Advantage” which helps create and maintain an anti-cancer environment within your body.  All of the advice I followed was based on published scientific research (with the references included for my review—along with a full and meticulously reviewed list of potentially harmful drug-nutrient and drug-herb interactions to avoid) and tailored to my specific treatment, individual needs and changing biochemistry.  I was also closely monitored with regular blood work (ordered by my physicians, no less!) for analysis and then my doses adjusted accordingly.  This is why I felt so comfortable doing what I did and why, as Laura Beil said, I “snuck” my vitamins into the Bone Marrow Unit during my stem cell transplants.

While I fully agree that eating your nutrients is the superior choice, what this article didn’t take into account was that with you are not dealing with the “average Joe”, you’re talking about cancer patients who are undergoing aggressive treatments that all have a common side effect of nausea.  Some days I couldn’t even eat I was so nauseous, but I could swallow a few pills to get some nutrients into my body that desperately needed fuel and power to withstand, utilize and heal from the aggressive assault of my high-dose chemo treatments.

This also brings up another important point.   Cancer patients in general are in an extremely unusual state of needing certain vitamins and nutrients that are depleted very rapidly, over and over, as they go through their various treatments.  In most cases, even if you are hungry, you couldn’t possible eat enough of the specific nutrient(s) that you need—if you even knew what they were—to make up for the excessive and continued loss.  This isn’t about filling in the gaps of a normal deficient diet.  It’s about trying to support and strengthen your body as you go through your life-saving, yet highly toxic treatments.   Although my case and treatments were on the extreme side of aggressiveness, what also wasn’t taken into account in this article was that, even though diet was a huge part of my healing journey,  for the duration of my high-dose chemos and bone marrow transplants (due to the risk of infection from bacteria, mold or viruses)  I wasn’t allowed to eat most of the healthiest things—salad, fresh fruit, juicing, etc.  I was required by my doctors to eat only well-cooked items for almost a year.  And I’m not alone in this.  Most cancer patients are advised to avoid certain “healthy” items due to the decrease in immunity from the treatments they are receiving.  So this isn’t about a simple multivitamin filling in the nutritional gaps of a normal diet with a pill, this is about a HUGE taxation on your body that needs help replenishing what is wiped out by the treatments.  And just so you know, most multivitamins (that the article sites as “safe”) usually contain copper and copper is horrible for cancer patients and is linked to relapses.

Another important distinction to make is that I didn’t t just go to GNC and fill up a shopping cart, nor was any of it haphazard or following the latest and greatest internet hype or email chain promising to cure cancer along with bringing world peace.  All of the supplements I took (and continue to take) are pharmaceutical grade and come from a company that sells only to state-licensed practitioners and strictly self-regulates the products they sell by laboratory testing and working with companies that have proven track records.  And as Laura Beil pointed out, it’s true that droves of well-meaning loved ones and strangers alike all seem to have a suggestion of what they’ve heard about that will make the critical difference, the holy grail of survival, and I was grateful to have someone to consult with on each of these options and a clinically-based, up-to-date filter to put them through.

Sadly, the CURE article seemed more interested that I “hid” things from my doctors (which was only for a total of eight days between both high-dose chemo treatments—that were the big “unknown” for them safety-wise) than the fact that I was never readmitted to the hospital for things like extremely painful mouth ulcers because I was taking supplements to specifically avoid that side effect, sparing me additional pain and allowing me extra nights at home (in addition to saving thousand of dollars in medical expenses since each night in the Bone Marrow Unit was charged as a night in the ICU).  Plus, my doctors advice was, basically, that they just didn’t know so they couldn’t tell me that it was OK to take my supplements, versus my PhD nutritionist who was looking at the clinical data that said it was not only safe, but it could help.  Which would you choose when your life hangs in the balance?  Ummmm, probably what I did…anything to help swing things in your favor and make an already hellacious ride a little bit smoother—sounded good to me!

I think my extreme medical situation points even more strongly to the effectiveness of nutraceuticals as a complementary and, in my opinion, key component in treating the whole patient by balancing the tearing down with helping to rebuild, to enhance and increase the overall outcome.  I believe I am living proof of that and thank God everyday that I was led to someone who could deftly guide me through this cutting-edge arena within the spectrum cancer treatment and care.

The fact is that most doctors don’t know which supplements do work and which one’s don’t and, quite frankly, they don’t have the time to figure it out.  Their job is to save your life with the medical resources they have within their speciality and my doctors did a fine, fine job of that for me.  As a medical practitioner, I knew it was my job to figure out the rest and seek out the best ways to support my body as I went through all of the treatments that kill up to 20% of people who receive them.  There is no doubt in my mind that the supplements I took were a “difference maker” in:

  • Being able to tolerate the full strength of both high-dose chemos when half of  patients don’t;
  • Why I didn’t get the mouth and throat ulcers that cause most patients to be readmitted to the hospital for pain control;
  • Why the doctors marveled as I power-walked for an hour every day on a treadmill in the Bone Marrow Unit and
  • Why I was able to run sprints at the track with my husband less than four months after my last transplant when my doctors had prepared me for the possibility of  lifetime chronic fatigue.

With all that said, the fact that I am happier and healthier than ever before, run sub-7 minute miles in road races and was the first female to finish a 5K less than two years after my treatments, I’d like to think I’m an example of how the supplements not only didn’t hurt me, but helped me to overcome seemly insurmountable odds and even thrive in the face of them.

I think it’s important for people to know that I followed what my doctors said to the letter in almost every aspect of my journey and I did very well because of it.  But when something didn’t feel right that they were suggesting (as in stopping my supplement schedule for instance during my transplants), I went with what felt was right for me.  We all have the right to make that choice in the end and our doctors can only tell us what’s right for “most” patients or that they simply do not know.  Not knowing isn’t the same a being bad for you.  I researched all sides of the equation, gathered my information and did what felt right for ME, on a gut level.  Also, when I saw that SPAM was on the “approved foods” list, I knew I had to take matters into my own hands!   And, yes, it’s empowering to follow your own instincts, because it’s the only true guide when the final decision must be made.  I’m hopeful, if nothing else, that this article will help patients see that they do have a choice, to ask questions and to become an active participant in their own healing.  My doctors were very supportive of that and I am forever grateful but I didn’t want to implicate them, liability-wise, in my personal choice to do both—to do the aggressive treatments they recommended and support myself nutritionally.  And, of course, patients should not haphazardly try the “latest and greatest” or large doses of anything without proper guidance.  My hope is that by reading this people will see the importance of working with a trusted expert whose sole job is to keep up with the most current, up-to-date research and will monitor you closely.  I am exceedingly grateful to have had someone like that to help guide my way and empower me with the information I needed to succeed.

And, yes, no one can prove that my supplements made a difference or not in the final outcome.  However, I can prove via blood work/lab results that my protein levels, vitamin D status and B12 levels (among others) were all positively affected by the supplements I took and the dosage changes that were made.  But, either way, there is a deep knowing within me that what I chose to do made all the difference and that’s all I really need to know. Plus, I think the McDonald’s hamburgers and fries I saw other patients eating at lunch time were way more toxic than my Astragalus Root capsules, but I digress…

At the end of the day I’m grateful to CURE Magazine and Laura Beil for bring the subject of nutraceuticals’ role in cancer care to the public and for bringing to light the fact that we still have a lot of ground to cover as we shift an old paradigm where “medicine-only” still reins supreme.  At a time when the interest in an integrative approach to cancer care (by utilizing both traditional and complementary modalities to gain synergy and better patient outcomes) is on the rise and the importance of treating the whole patient is resonating with an increasing number of people, it is paramount that we pass along the proper information and complete picture to help empower others with the data and resources that have illuminated the way for others, as it did for me.  People are instinctually recognizing the “holes” in the old way of thinking just as medical science begins to pull back the curtain of what has been missing and as the research in the complementary care field gets stronger and more robust.  This is how change has begun since the beginning of time and it’s the sole reason why I’m doing what I’m doing by sharing my journey and what I learned.  I want to be part of the change that is helping to improve, if not save, lives—just like mine—and that will ultimately augment the way we all view healing.

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2 Comments

  1. Posted November 19, 2011 at 3:11 am | Permalink

    Nicely done Alyssa!

    I visited a friend in the cardiac unit of the hospital this week. I was there when the nurse read the lunch choices. So many options were FULL of gluten and dairy and sugar. I don’t know much about heart surgery but I know that those inflammatory food options won’t help patients heal quickly.

    • Posted November 21, 2011 at 6:03 pm | Permalink

      Thanks Kendra! And, yes, many times it’s surprising what is considered “healthy” by healing institutions. I actually brought in my own food and water to the hospital because I knew how important it was! Hey, you do what ya gotta do, right?! :) Xoxo

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  1. […] clarify the issue, Phillips wrote a blog post describing that in reality her use of supplements was a very scientific process.   She is clear […]

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