Dispatch from the Lab: The Moonshot

I’ll just get right to it…three weeks ago I was human patient #7 receiving Klotho Gene Therapy at a hospital in Monterrey, Mexico. I’ll try to summarize what that all means and give this treatment some context…hang on, this could be a long one.

?By Sept I was mostly resigned to an inevitable trajectory…exponential disease progression paired with a limited and dull toolkit to do anything about it. I considered the various treatments and therapies available to be uninspiring, inadequate, and/or harmful. My reservoir of hope on empty, and a grim six month prognosis, I needed a miracle. A pathway was revealed to me via the husband of a recently deceased cancer friend…we’d been comrades navigating the Stage IV CRC gauntlet and I was in awe of her pushing leads with ferocious courage. He connected me with a doctor she had wanted to work with who was practicing “transitional medicine”…this is the space where promising therapies jump from the laboratory and animal studies, into humans. These are exciting, risky, and murky waters.

?In the US, this will typically take the form of a Phase 1 Clinical Trial. To even get it to that point, billions of dollars have probably been spent in R&D to assess its safety, potential efficacy, and profitability. A Phase 1 Clinical Trial will incrementally dose up the therapy with tightly controlled and monitored oversight to determine tolerance…how much can a person handle and what are the side effects…then it moves to a Phase 2 Trial to assess efficacy…then it moves to a Phase 3 Trial that nets a wider cohort of patients to push it across the gold standard threshold of FDA approval. This takes years, billions of dollars, and the legal, ethical, political, and bureaucratic guardrails, theoretically designed to keep people safe, are colossal.

?So for someone like me who may want to gamble on a therapy right now that isn’t in this pipeline, you have to look outside the US sandbox. And here we meet Dr. Klotho. I’ll protect his real name for now, and I’ll preface this by saying that he’s got a distinguished CV, a 40 year international career, and what he does is legal…in Mexico. So he introduces me to Klotho Gene Therapy. I’d never heard of it. Turns out, none of my US allopathic or integrative doctors had heard of it either. Turns out, there’s hardly any information that exists in the world about it. But Google “Klotho” and “Cancer” and some eyebrow raising research comes up. He had my attention.

?Klotho is a naturally produced protein in the body…it was “discovered” in 1997 by some Japanese researchers who observed its correlation with longevity. They named it after a Greek Goddess who spun the thread of human life….nbd. Then it was observed in vitro (laboratory) and in vivo (animals) to be positively associated with kidney function, intelligence, and as a possible therapeutic agent for neurodegenerative diseases like Alzheimers…and, for cancer. So, if you want a shitload of klotho to have an impact on something as entrenched as advanced metastatic cancer, how can that happen? There are a few ways to boost natural production (specific exercise) or introduce it exogenously, but the Klotho protein has a short half life, and you just don’t get enough of it. To turboboost production, you need more factories. Enter Gene Therapy. This is where it gets melt-my-brain science fiction. Klotho is produced by the Klotho gene, so it’s this genetic hardware you want installed in your cells which will then begin to ramp up production and continue to churn out Klotho for as long as the life of that cell. In my hepatocytes (liver cells) that happens to be 9-12 months. To get that genetic hardware delivered inside the cellular DNA matrix, you need….a virus. The adeno-associated virus has become the flagship delivery service for many gene therapies…in this case, some scientist at a US based biotech company synthesizes millions (billions?) of AAV with the Klotho gene which is then ready to be infused into my hepatic artery…the virus invades cells under the radar of my immune system (hopefully) and carries with it the factory to crank out a tsunami of anti-cancer protein.

?Yeah, fucking crazy.

?Dr. Klotho had performed this therapy on six other patients described as having advanced metastatic cancer (CRC, breast, and prostate) with no remaining options in the US. It was a one time outpatient treatment with no side effects, no contraindications, and no conflict with any other therapy or treatment I might want to also try. I was made aware of some rare but catastrophic risks. According to him, all six patients are still alive, and experiencing ongoing disease regression. I’m unable to verify this. There’s no available documentation about the procedure. Nor was there even a single expert to get a second opinion from…trust me, I asked around. I know what you’re thinking…this sounds sketchy AF. Yup. At one point I sent him a pointed message… “whew, no patient testimonials, no written documentation, no one in the US seems to know anything about it, no legal oversight, no refunds…I’m sure you can appreciate how this plays into the narrative of the desperate cancer patient taking absurd risks to advance the bank accounts, egos, and rogue science of entities that prey upon people like me. I mean, even if you and Klotho gene therapy are legit, you must be able to see that perspective.”

?His response: “I can John. You don’t have to do it.”

?I know you all want to know…what’s the price tag? Cost is relative to what someone’s capacity to pay is. If you have $100 to your name and something costs $99…the cost is everything you have. This cost me everything I had…and I was gifted the difference by a loved one. What would you be willing to pay for the moonshot chance to live a longer, healthier life? Everything you have? Remember, there’s no guarantee, no insurance, and no refund.

?Here was a pretty dramatic inflection point for me. As I was absorbing everything I could about Klotho, this treatment, this doctor I’d never met, I began to sense something I hadn’t felt in a while. Hope. My brain began to strategize all the other things I could spin up around this therapy to give it extra oomph… Excitement. And a playful child inside that loves to explore off trail because that’s where the REAL magic is began to dream. Adventure. I needed to believe that Dr. Klotho believed that this could really be a viable and potent therapy for me and was offering this treatment from a place of integrity. Trust. I could feel myself leaning forward over the cliff edge and by holding back I knew I would be forever haunted by the question of “what if”. And I really didn’t have anything to lose. So I jumped. The Moonshot.

?Three weeks later I feel ready to share this because I have to get it all out of my head. It’s like some wild melatonin dream. I’m on the other side of the known rare but fatal risks…a cytokine storm and catastrophic liver failure. I also have some data that gets me excited. With fresh motivation to save my life, I rallied a “greatest hits” of anti-cancer strategies that included a monoclonal antibody from OHSU, mistletoe and hellebores therapy, oxyhydrogen gas, Mebendazole, a daily fist full of supplements, and doubling down on diet, intermittent fasting, exercise, IR sauna, and lifestyle interventions. The fucking kitchen sink. Because that’s what it probably takes to overwhelm metastatic cancer. I needed the infusion of hope and excitement from the Klotho gene therapy to get this huge production churning. So, how’s it going?

?The graph charts my CEA (carcinoembryonic antigen) which is a bread crumb of colorectal cancer. The higher the number, the more cancer you have cooking in your body. You can see the exponential climb over the summer measured once a month. Until Oct 3. The dramatic decline is measured every two weeks. My Klotho gene therapy treatment was Oct 10 so I can’t attribute this initial fall off to that…my understanding is that it takes several weeks for the factory to really ramp up Klotho production. But clearly I’d be coming into the potential of that intervention with a full head of steam. Which was the strategy. I’ve been here before with some impressive drops in my CEA at the onset of treatments. CEA tells a limited story…the real picture shows up in scans…are tumors getting bigger, or are they getting smaller? I had a baseline CT scan on Oct 15 and I’ll have another on Dec 18. That will reveal the full story.

?I tried to get a pre-treatment serum Klotho test because obviously that would be useful information. Turns out, this is a science wilderness and there’s one lab in the US that tests serum Klotho…the process was confusing, inefficient, and sluggish. So unfortunately my test was from Oct 23, thirteen days post treatment. But the result put me in the 99th percentile for a 47 yr old male…like WAY high. Did I come in with already elevated serum Klotho by being a healthy active person? And/or is this the fruits of the genetic factory beginning to flood my system? Bummer we’ll never know. What will be VERRRRRRRY interesting to see in mid Dec is…what’s my serum Klotho 2 months post treatment? And…are my tumors shrinking? I know, I know, you can barely call this science.

?If you want to know more about this treatment, this doctor, my calculus on making this gamble, send me a personal message. I’m happy to share. I’m not interested in a pubic debate about ethics, access, privilege, cost, risk, or how fucked up the cancer industrial complex is. My best advice to you healthy normals…focus on what you can do to lower your risk for cancer, and get screened early. You have the keys to your own earth suit.