My Journey Starts Here

Patience is not just a virtue but a necessity when dealing with cancer, your role must pivot from ‘victim’ to ‘advocate’…easier said than done.

From Diagnosis -> Chemotherapy -> Surgery -> Helminthic Therapy -> Integrative Medicine

The vast majority of traditional oncologists automatically label Stage IV Cancer as “terminal,” because of the lack of consistent medical proof that current standards of care would cure such an individual of cancer. What those oncologists fail to mention is that they only follow a protocol of prescribing chemotherapy (or immunotherapy if you qualify). In most instances, the patient’s prognosis is based on how well they are responding to a set number of rounds they receive of “treatment”. Those rounds are usually based on an industry-standard where traditional oncologists box patients based on their age and stage of cancer; with very little encouragement to customize treatments between patients.

As an individual who has been diagnosed with Stage IV Colorectal Cancer for over three years, there have been many instances where I’ve questioned the methodology of my first oncology team. Their standards were based on a “one size fits all” method where regiments and dosages were used in succession. Any outside perspective that did not include or compliment chemo/immunotherapies were deemed as hocus pocus and immediately dismissed with prejudice. Unfortunately, many people have this as their first experience, mainly because of a lack of compassionate care near them, rural areas lacking access in particular as compared to their closest larger urban centers.

Jonny Puglia at one of his first [of 110] rounds of chemotherapy at New York Oncology Hematology in Albany. (September 2018)

While I can’t read minds, in my personal opinion the “standard of care” approach is largely due to the way we teach our doctors, from med school through residency and fellowship programs. We place western medicine on a pedestal as the only “real” solution to any illness. They highlight the fact, through published work, that these medical interventions that involve synthetic treatments provide the patient with the best possible outcome; mainly using the phrase “deferment of disease”. Simply stating that we are buying you a little time. These papers have been heavily weighted to promote solutions that tend to ignore the power of mindset and the possibility of repurposing everyday prescribed medicine. The vast majority of trained doctors then buy into a culture reinforced by the previous generation’s procedures with no motivation to rediscover or seek highly customized care, whether they would complement or even supersede the “standard” drug cocktail.

The origins, unfortunately, do not start there. The United States’ healthcare system was flawed from the very beginning; melded with the primary goals of profit and expansion. Now compare that with the other “developed nations”, where healthcare is seen as a right with a morality code that supersedes most capitalistic tendencies.

Big Pharma (large for-profit pharmaceutical companies) has by far the most leverage in the medical sector. Not only do they have access to grants and subsidized funding (thanks in large part to the taxpayers), they have influence over our medical professionals, with a direct line to offices, hospitals, and clinics, offering free samples and alluring incentives to create exclusive partnerships for drugs to supply their patients. Not only that, but they have the right to post their patented drugs as advertisements on TV, Radio, Print Media, and in Doctor’s Offices – asking patients to tell their doctor about “this” drug. Not only is this dangerous, but I believe it has contributed to the overall drug epidemic that we often see each day on the local news. More importantly, they have control over your data that your favorite social media platform gives away for a price. Just think about how many targeted ads you receive because of your search history. I know mine is plagued with cancer, healthcare, vegan diets, and yes even funeral discounts.

A comedic take on American Healthcare – reactionary medicine in place of preventative.

These massive companies are encouraged to lead with profits by means of patents on specific recipes based on their discoveries/inventions, by way of government subsidies.  Taxpayer-funded subsidies generate the fuel for large projects hoping to find another synthetic drug breakthrough that improves upon a previous patent from a rival company. Now at first glance, this sounds pretty good. We remembered from economics class the fundamentals; the price of goods falls as competition increases. However, once a drug is patented, it cannot be reproduced in any generic form for up to two decades with a possible five years of additional protection under some United States and the European Union rules. This provides the company a monopoly; allowing them to design their own supply and demand curve; which allows them to take advantage of pricing – bottom line profit. This often discourages anyone from investing in other drugs that may improve the drug; whether that means reducing severe side effects or more bioavailability to improve the result. Once that patented protected time is up other companies can then create generic versions of that same drug, which shares the same ingredients as the previously patented one.

A classic example of this can be seen down the aisle of your local CVS. Seasonal allergies are punishing for a majority of people, caused by an overreaction of your immune system which attacks simple compounds like dust, pollen, etc. As the antibodies derived by your immune system go after those compounds the results you feel are sneezing, runny nose, or that tickle in the back of your throat that you can’t seem to itch. As you walk down the aisle to find the allergy section, you see dozens of choices with prices all over the place. One thing that is very common is that the “store” brand tends to be the cheapest. Why is that? Because that is one of many generic versions of a previously patented drug that long expired. Take a look at the back and compare the ingredients with the popular brand name – you’ll find that they are exactly the same. So that generic drug is often bought over the pricier options.

The typical over-the-counter pharmacy aisle (Photo by: Jeffrey Greenberg/Universal Images Group via Getty Images)

Drug companies, whose duties are prioritized to their shareholders, are focused on profits or margins that only help grow their profits – allowing them to hand out dividends. Now standard capitalism dictates this is good since it provides more investment from shareholders back into the company. Allowing that pharmaceutical giant to put money back into researching and development, providing more breakthroughs and medicine. Stepping back and rereading those last three sentences…who does this best serve; the patient or the drug company themselves?

Companies focus their primary attention on creating standalone medicine that allows them complete control over their new treatment. This is where they make the MOST profit. Once that drug’s patent expires, other companies then rush in to create cheaper versions to compete. However, while this seems to help your local allergy-prone friend, the same cannot be said for other complex treatments that are limited in supply and a few companies who often collaborate together (I know, “fighting words”).

I started the standard protocol for chemotherapy, based on my cancer, advanced stage, and tumorigenic. First up was FOLFOX, after 12 rounds; progressing into the next chemotherapy regiment FOLFIRI. Again, I was caught off-guard by how well my cancer was resisting these toxic therapies. My last “standard of care” chemotherapy was this emerging PD-1 inhibitor called Certuxinab. In order for this immunotherapy infusion to work, I would have to pair it off with another “standard” chemo-infused drug; either 5-fluorouracil or irinotecan. Both were extremely familiar to me. According to my FoundationOne genetic testing, the 5-fluorouracil/cetuximab pairing had the most scientific backing data to best assist me. However, my insurance company (CDPHP) denied the 5-fluorouracil, stating that in their opinion that Irenotecan made more sense. My doctor simply switched me to Irinotecan without any challenge or concern, something that still irks me to this day. I was too stubborn then to question her actions! I mean how can an insurance company dictate my treatment plan?! Eventually, after looking through my records months later I discovered that a contracted nurse with my insurance company made the decision. If I only knew that then, what I had learned months later, you would bet my ass that I would have been at their offices looking for that unqualified nurse. ALWAYS APPEAL! Fortunately, my new regiment was working brilliantly, allowing me to qualify for surgery – Total Colectomy, Liver Resection/Ablations.

FDA approved Colorectal Cancer chemo/immunotherapies. Noticed that my regiments were not as concrete as this list. This can vary in part to the presence of known mutations that your biopsy will show. (Colorectal Cancer Alliance – ccalliance.org)

There has been emerging research into the metabolic protocol, thanks in part to a growing audience who desire a pathway beyond extremely harsh treatments. In most cases, this approach is often matched up with standard therapies like chemotherapy and immunotherapy. During my own research and experimentation with this protocol, I noticed many people with who I connected were too afraid to mention this to their oncology team, due to overwhelming fears of rejection. I have to admit that I followed this approach too when my cancer remission lapsed in early January 2021. While many of you are probably rolling your eyes at this decision, let me explain my connection with my local oncology team. From the start, my oncologist and I did not have a strong connection. I thrive on challenges and my doctors basically focused on delaying death – my goal was to strive past prognosis dates. Additionally, my oncologist refused to consider other treatment options besides chemotherapy, since my previous tests disqualified me for immunotherapy regimens. This disdain I developed stemmed from my previous disclosure to them about embracing reiki, meditation, low-dose aspirin, and acupuncture.

Jonny Puglia enjoying water yoga on Lonely Lake, New York, six months after his total colectomy and liver surgery. (August 2020)

“There is nowhere near enough evidence to even attempt this” “You’ll end up getting worse” “Chemo will have the best effect on its own”. As I rolled through the previous conversations with them in my head I kept letting go of any regret. “I ended up here for a reason”, I keep telling myself. “Most people with my condition do not last three or more years with the pain and activity level you have had”.

This wouldn’t be my first time holding back with my oncology team in Albany, New York City, and in Bethesda, MD. The first “experimental” treatment I added on after starting chemo was Helminthic Therapy, often referred to as Hookworm Therapy. At first glance, like myself, my reaction was priceless. “Who the hell would do this?!”. After being highly recommended to a local naturopath I dumped ALL the questions in the world about this bizarre take on natural medicine. Needless to say, I continued on with it up through my first surgery, which occurred after my tumors responded very effectively to my last line of chemotherapy – surpassing all other known traditional regiments. The most fascinating thing about this experience was that I started my Hookworm Therapy at the same time as that chemotherapy regimen I mentioned (Cetuximab/Irinotecan). More details on a separate blog post to come!

Jonny prepping for his fourth inoculation of Helminthic Therapy, with the species Necator Americans under the supervision of his naturopath. (2019)

Again, researching is KEY to any potential discovery. It does not exclusively include Google Scholar or web searches, in fact, I did most of mine by subscribing to a few medical journals; using my old college access, or emailing directly the authors of a specific paper that I could only find the abstract for. In most cases, authors of peer-reviewed papers can actually send you the full paper for free!

The metabolic protocol is quite diverse and has no defined standard for each individual, it rather focuses on the uniqueness of your disease by blocking known pathways that cancer uses to feed and survive. There are many facets to this and research is ongoing to help solidify this approach. Data points are gathered daily from everyday individuals who chose to experiment with the help of an approving physician or naturopath. To understand this protocol to the fullest would mean to know the various pathways that cancer can take – based on cancer type, stage, mutations, among some of the factors. It is very overwhelming at first, to the point that I thought I would need actual medical experience to get started. Many stigmas exist from traditional oncologists who view this as raw snake oil. I truly believed that they refused to learn it because of their training and pressure from their administrations; they refused to modernize and ignored any potential education to even consider their own research into it.

I was fortunate to have been connected with leading medical research. Combined with social media, I was able to meet others who were either on the fence, currently using, or have done so with success. There is one important fact that you need to know about testimonials; only consider their influence as a small piece to your own research puzzle. Everyone reacts differently to any protocol or supplement, even if you share the same exact cancer diagnosis! One great resource that I have found helpful with investigating this method is Jane Mclelland‘s book “How To Starve Cancer without Starving Yourself”. I do not have any connections or associations with her, just the invested time into reading her detailed book which is the accumulation of her own research spawned from her initial stage IV diagnosis, remission, recovery, AND diagnosis with a new cancer years later (which she again achieved remission from). She highlights the importance of reusing known prescribed or over-the-counter drugs and supplements to mitigate cancer’s pathways; along with adding diet and exercise to this routine.

The treatment protocol for CareOncology, via their website, specifically for Colorectal Cancer treatment (2021)

At one time or another, you will find out that cancer is not linear. Meaning that you will not necessarily know whether it is stable, decreasing, or progressing at any given time. A combination of PET/CT/MRI scans is needed, along with routine blood work to give your oncology team the complete picture.
Patience is not just a virtue but a necessity when dealing with cancer, your role must pivot from “victim” to “advocate”… easier said than done. Only by asking questions, thinking outside the box, and seeking multiple opinions is where you can start your journey towards advocacy. Remember that your “voice” is the ultimate weapon behind your cancer diagnosis – it can open or hinder you depending on how you seek help.

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