This Is Making Your Chemo Side Effects Worse And It’s Not the Drug

Side effects aren’t always from the drug. Learn the hidden cause and how to avoid it. #Nocebo #chemotherapy #sideeffectsofchemotherapy

👉 Get your free guide, '10 Things to Elevate Your Chemo Journey'

👉 Want personalized attention to help you along your individual cancer journey? Explore 1:1 sessions with Dr. Chaplin

👉 Want to find out more about Dr. Chaplin's journey of bringing a cancer drug to market? Explore his innovations

Citations:
https://en.wikipedia.org/wiki/Nocebo 
https://pharmaceutical-journal.com/article/feature/nocebo-the-placebo-effects-evil-twin
https://pmc.ncbi.nlm.nih.gov/articles/PMC3167012/ 
https://pmc.ncbi.nlm.nih.gov/articles/PMC3401955/
Nocebo stronger & longer lasting https://elifesciences.org/reviewed-preprints/105753v1 
More information & doctor visits = more sensitivity https://pubmed.ncbi.nlm.nih.gov/25851232/ 
Nocebo education w/ chemo https://pmc.ncbi.nlm.nih.gov/articles/PMC9502603/ 
Gardasil pkg insert, last paragraph, pg 7 https://www.fda.gov/files/vaccines,%20blood%20&%20biologics/published/Package-Insert---Gardasil.pdf 
Extreme reviews on social media https://conference.nber.org/confer/2019/DTs19/Dina2.pdf

--------------------------------------------

Inquiries: 

info@elevatingcancertreatment.com

https://elevatingcancertreatment.com

--------------------------------------------

Disclaimer:
The information provided in this podcast is for educational and informational purposes only, and does not constitute medical advice. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard or read in this podcast or on this channel.
Reliance on any information provided by Dr. Jay Chaplin or Elevating Cancer Treatment is solely at your own risk. Dr. Jay Chaplin is a scientist and drug developer, not a medical doctor providing patient care. The content presented here reflects general scientific understanding and research, and may not be applicable to your individual health circumstances. Individual medical conditions and treatments vary, and no two situations are exactly alike.
Always consult with your personal healthcare provider before making any decisions about your health or treatment plan.

Transcript

SPEAKER_00 0:00

You are not imagining your side effects, but you might be causing them. What do I mean? What if I told you that your research, your preparation, the thing you think is actually protecting you, is actually making your side effects worse. Yeah. And I'm not talking about in your head, not imaginary, real, measurable, easily avoidable, if you know how. This is for you if you are ever going to take any drug or supplement ever again in the rest of your life. Because I guarantee you that you have already been harmed by this in the past, and you would be by default in the future. And today I'm going to show you how to dodge what I call the placebo effects evil twin. Hello, and welcome to Elevating Cancer Treatment, where we explain the science and debunk myths to help you navigate your health journey. My background is a little different. Beyond educating about cancer, I'm actually designing new drugs that are defining the future of oncology. This direct hands-on experience offers me a very different perspective of how these cancer treatments work on the body, interact with the cancer cells, and cause side effects. And these are insights that I'm excited to share with you. If that sounds interesting, make sure to like this video, subscribe to the channel, and hit that notification bell so you never miss an update. And please share it if you find it useful. I'm Dr. Jay Chaplin. An important reminder, I'm a PhD, not an MD. The information in this video is education and it's not medical advice. Every cancer is unique and no general information applies to everyone. Please remember that. Always consult with your healthcare provider for guidance on your specific situation. And two quick things. First, as a thank you for being here, I've created a free resource, 10 things to elevate your chemo journey, which you can download from the link below. And second, by signing up, you'll also get updates on that innovative cancer treatment I'm working on. I'm confident it represents a significant advancement in immunotherapy. So please take a moment, download your free guide, and join us in shaping the future of cancer treatment. Most people know about the placebo effect. You take a sugar pill, but because you expect it to work, your body literally creates the benefit. That's wild. And it's true, happens all the time. But here's what very few people talk about. There is an opposite version. It's way more dangerous, way more common, and way more persistent. And it is making your life much more difficult than it has to be. It's called the nocebo effect, N-O-C-E-B-O, nocebo effect. And it means this, simply, if you expect a side effect, your body can create it or intensify it, even if the drug didn't cause it, or even if you didn't take a real drug at all. Let me say that again. You can feel real pain, real symptoms, real stress hormones, real fatigue, real rashes from something that physically cannot cause them. This is not a small effect. In one statin drug study, 26%, more than a quarter, of all the people taking the placebo dropped out because of muscle pain. That's a known side effect that they were warned about. But remember, they weren't even taking the actual drug. They were taking placebos. 26% dropped out because of the side effect that couldn't happen. Another study. Researchers added a warning about stomach issues, but only on some intake forms, not others. Guess what happened? Side effects were reported six times more often in the ones who were warned. Dropout rates were six times higher. Again, this only occurred in the group that received and read the warning, not the other one. That's a big difference for a small thing. Same drugs, same type of people, same setting, completely different expectations, and completely different results. Even crazier, in most medications, almost all medications, up to two-thirds of side effects aren't from the drug at all. They're from negative expectations. For example, 15% of patients in a study of phenosteride for benign prostatic hyperplasia reported a specific side effect, but that jumped to 44% if the potential side effect was mentioned anywhere in the intake. I want to pause here and say a couple of important things. Again, these are real side effects caused by your expectation. They show up on lab tests. They result in real and measurable harm. This is not imaginary. This also happens with almost everyone, and almost all of the time. Finally, I'm definitely not encouraging you to ignore symptoms. No one should suffer. If you are experiencing side effects, you should take action to reduce them. This episode isn't about ignoring symptoms, this episode is about how to prevent them. There's no need for suffering. Nobody here wants that. So all of this comes from something called subject expectancy bias. Basically, the more convinced you are that something will happen, the more likely your body is to make it happen. That's the foundation. And here's the kicker. Your brain is wired to prioritize danger that used to keep us safe. So, negative expectations? They hit harder, they last longer, they stick. We've done research on this, it's true, they last longer. Now they work against your well-being. That's why the nocebo effect is not only larger, but also longer lasting than the placebo effect. This is just part of how we work. We're better at determining bad things to avoid than we are at keeping focused on the pleasant things that we're hoping for. Simply put, our brains are primed to give more weight and memory to potential danger, pain and illness, than potential relief. And that makes negative predictions much more impactful and remembered for longer. Now, you might be thinking, okay, sure, that's about muscle aches. Surely this doesn't apply to serious treatments and harsh side effects like with chemotherapy. Actually, it does. We've studied that. Of course we have, and here's the data. In one study, and this was with standard regimens like Full Fox or Full Fury, for any type of gastrointestinal cancer, stomach, colorectal, etc., they didn't change anything about the drugs, they didn't change anything about the protocol. They just told the patients in one group, hey, the nocebo effect is a thing. It happens. That's it. They had one 20-minute explanation that the nocebo effect exists, not even any tools to manage it, just awareness. If you expect bad side effects, your side effects will likely be worse. The result? Here we go. Less nausea, less diarrhea, fewer side effects overall, just from awareness after a single 20-minute description. That's why we're making this video. This here is your awareness training. And beyond that, we're also going to give you specific tools to further reduce that nocebo effect. Because it's really not hard if you do it. So if this is happening, and it is, how do you actually protect yourself? So we can do much better than just awareness. First off, for many drugs and combinations, the actual rates and intensities of side effects measured in clinical trials are easily available. People just don't look for them. Get the real numbers. Some products have that information easily available, like Datroway right here. Great job, Datroway. And some bury it inside the healthcare providers portal that they then try and convince you that you should never have access to. And I'm looking at you, Keith Truda. Boo! Again, I often do this for clients, and you can do it for yourself. The search is often really easy. You just need to specify that you're looking for a numerical value. Try a search for something like percentage incidence of side effects for Datroay, or whatever drug or combination you're looking for. In most cases, you don't need anything more sophisticated or complicated than that to get real numbers. Just asking for side effects allows you to stay vague without numbers. Staying vague lets the unknown create a big shadow of fear. Second, flip how you think about risk. Most people hear, 20% of patients experience this side effect, and their brain goes, that's a big number, it'll probably happen to me. Great, I'm doomed. That's what the brain does. Instead, intentionally flip it. 80% of patients do not experience this. Look, it's the same data, but it's a completely different mental impact, and your brain reacts differently. Your expectation is different, and the side effects you experience will be different as a result. Another reason I bring this up is how a focus on potential side effects without the actual numbers often leads people to decide they can't tolerate a treatment before even trying it. Now, this is a frequent topic of conversation with our clients where far more effective treatments, with usually equivalent side effects to what they're already on, are being left on the table out of fear. But it also happens with oncologists. In a recent call, I was talking with someone whose mother is very advanced, and honestly, we're looking for a Hail Mary to reverse and stabilize things. Because the current prognosis is not good. Current chemotherapy is ineffective. Regression is happening. Now, there is a fantastic drug in this situation. It's very potent. It's licensed specifically for this condition, has a very good chance of buying her more time and significantly improve quality of life, maybe even a complete reversal. But the oncologist is unwilling to prescribe it due to a 3% chance of lung issues. That's preferring a greater than 95% chance of rapid progression and, honestly, death, over a 3% chance of causing lung issues. When you frame it vaguely, risk of severe lung side effects sounds and feels very scary and like something to avoid. But when you put numbers to it, 3% is a lot lower than 95%, and it no longer makes any sense. Also, going back to evaluating risks, be aware that most cancer drugs are tested in combination, such as with a new drug plus full Fox versus full Fox alone. In order to know what the side effects are due to the new drug itself, you have to subtract out that background. Otherwise, mentally people will double up on their side effect expectations. They'll think that these side effects are from just the new drug, and they'll add in full Fox. That creates worse side effect expectation and experience than is warranted. Now, sometimes you get lucky, and the trial is for a monotherapy, just the one drug. And you don't need to check this part, but those are pretty rare, so please be aware of that. Third, not all side effects are equal. Let's talk about how to judge the severity and not just the overall chance of side effects. How do you review the side effect information so that you understand better what these notes that come with your medicine actually mean? So clinical trials break them into grades, five grades. You've got grade one, mild, barely noticeable. Grade two, annoying, but manageable by yourself. Grade three are severe, they require medical intervention. Grade four, they're dangerous, they require immediate medical intervention, and grade five, that's death. Rare, but it does happen. So here's what people miss, multiple things. First, most actual drug effects are grade one or two. Again, here's the datawate example. One color bar for low grade, the other color bar for high grade. Mild stuff, temporary, definitely annoying and uncomfortable, very unpleasant, but not life-altering in almost all cases. But when you don't know that, your brain fills in the worst case scenario thinking that all side effects are serious ones. Fourth, clinical trial numbers are inflated by design, it's intentional. And why? So I put a link to a particularly obvious but unrelated example in the citations down below. This is the package insert for the Gardasil vaccine. If you look on that at the last paragraph on page 7, you'll see that there were 40 deaths during that clinical trial. 40 deaths is a lot, and that's pretty scary as a statistic. However, the kind of deaths change the story entirely. The majority of those were from either car accidents or gunshots. Clearly not related to the vaccine in any way, shape, or form, unless you think that a vaccine is going to cause a car accident. So why are they listed here? Because everything gets reported in a clinical trial. Seriously, anyone who tells you that clinical trials are rigged and big pharma companies are hiding bad data obviously has never looked at actual clinical trial data. People really have the wrong idea about big pharma. There are a lot of shortcomings, but this is not one of them. And you can look at the pharma video we did about that. Everything that happens to anyone during a clinical trial must be reported. Also, again, remember in these clinical trials, patients are legally required to be warned about all possible side effects, which automatically increases the nocebo effect, which automatically increases reported symptoms. So if you don't look carefully, you're seriously overestimating risk. Now again, some drugs have this data readily available, some do not. But it's always out there if you dig hard enough. And that's one of the things that I enjoy doing for our clients so that they can accurately weigh these various concerns for themselves or their loved ones. These side effects are real, they do happen, and it's important to weigh them accurately. With all of these issues, wouldn't it be easier and better just to use social media and self-reporting from other patients? I mean, that's what most people do even if they don't understand the complications with reading real trial data. This feels better, it feels easier, and it's far more informative, but it is far more misleading, vague, and more likely to trigger a nocebo response for you. This is your warning. This is where the nocebo goes into overdrive. Why? Couple of reasons. One, extremes get amplified. Comments on social media are self-reported and amplified by the algorithm. And both of those factors dramatically increase the number and representation of posts with very extreme opinions. This has been shown in dozens of studies and has led to descriptions of J-shaped distributions in comments and reviews. Particularly, they're way higher on one end or the other end, regardless of how good or bad the actual thing was. This is because moderate experiences, the one in the middle, are really forgettable. They're rarely commented on. No one thinks it's worthwhile. They don't even stick in your mind. But intense ones on the edges are remembered, they're shared, and they're amplified. Now for product reviews, these tend to skew strongly positive, lots of five-star reviews on Amazon. But for doctors, hospitals, and drugs, they skew strongly negative. Those negative experiences are real. They are real. They're just very, very disproportionate. Just remembering that this occurs is helpful, and referring back to actual frequencies from those clinical trials is even more important here as a reality check. It is very easy to expect and create worse side effects through reading heavily biased comments online. Now, people with mild experiences usually don't post. People with bad experiences, they post a lot. Emphatically, memorably. Please check the numbers to prevent buying into a real but heavily distorted reality. Honestly, this is something to remember with all testimonials like we discussed in this video. Number two, big issue with social media, you identify with stories. Our brains do that. The nocebo effect works by expectation, and we expect things more if they happened to someone like us, rather than if it was someone obviously different, or if we just read a number on a page. That kind of tribe identification is just part of how the human mind works. Comments with descriptive stories that we can experience ourselves in. Video comments with people who look or feel like us, other experiences that we identify with strongly, they increase our identification with the scenario and make us more susceptible, rather than less, to the nocebo effect. If you find yourself watching a video like that, it is really wise to put some psychological distance between yourself and the story by focusing on the differences. Find differences between you and the subject of the story so you don't identify too strongly with their experience. Take it as information, not a prediction for you. If someone looks like you, sounds like you, has your diagnosis, your brain goes, that's my tribe, that's me, and your expectation skyrockets, which increases your risk of experiencing the same thing. Unless you manufacture some separation, any separation. Here's the truth. Look, I've said it before, I'll say it again many times. No two people have the exact same experience. Even identical twins with the same kind of cancer would respond differently. Everyone's biology is different, the cancer's mutations would be different, your metabolism is a little different, your life is different. No two people have the exact same cancer journey or results. The statistics tell you what is most and least likely to happen, but no one can predict exactly what your experience will be. Please take that as a freedom from negative expectation and the nocebo effect, especially when you're watching stories online. Do not let someone else's experience or opinion become your expectation. Because again, expectation is very powerful. Sometimes even more powerful than the drug itself. If this changed how you think about side effects, please stick around with the channel. We break down stuff that nobody really explains so that you can make smarter, calmer, more confident decisions, and have the best possible outcome with your particular cancer treatment. Beyond these videos, if you need more personalized guidance or a deeper dive into specific treatments to have your treatment be as effective as possible, I offer one on one sessions and medical advocacy. You can find information on our website, which is linked down below. Again, if you found this video informative, please give it a thumbs up, click the notification bell, and subscribe to our channel for more science based cancer insights.