RHR: Integrative Approaches to Childhood Cancer, with Dagmara Beine

In this episode, we discuss:

• Dagmara’s background and personal journey
• Challenges in pediatric oncology
• Root causes and contributing factors
• Integrative approaches to treatment
• Epigenetics and personalized care
• Outdated practices, common sense, and intuition
• Support and healing after treatment

Show notes:

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Hey everyone, Chris Kresser here. Welcome to another episode of Revolution Health Radio. It’s an incredibly difficult and trying experience to receive a cancer diagnosis for your child. But that is compounded by the fact that there are very few integrative or holistic options available for treatment. Or, put another way, there are very few clinicians out there who take an integrative or holistic approach to pediatric oncology. So for parents who want to pursue that as an approach, there just isn’t a lot available. And that’s true even if you’re willing to leave your local town and see a practitioner out of town or work with somebody virtually. So I’m really excited to welcome my guest Dagmara Beine.

She holds a PhD in integrative medicine and initially worked as a physician’s assistant in emergency medicine. But after her daughter’s cancer diagnosis and subsequent fights against acute myeloid leukemia (AML), which is a rare and quite serious form of leukemia, she transitioned into integrative pediatric oncology and now supports families and children who are dealing with cancer diagnosis to take a more holistic terrain-based approach to recovery and post-cancer recovery. In this episode we talk about her new book, which I highly recommend as a resource. It’s called A Parent’s Guide to Childhood Cancer, which is out now. We talk about what contributes to cancer diagnosis in children, how we can better support conventional treatment, what can be done after conventional treatment has concluded, and what some of her favorite tests and tools are for supporting cancer treatment in kids.

I really enjoyed this conversation. I think it’s absolutely critical work that Dagmara is doing. We need much more of it and I hope you get a lot out of it as well. Let’s dive in.

Chris Kresser:  Dagmara, it’s a pleasure to have you on the show. Welcome.

Dagmara Beine:  Thank you so much. It’s an honor.

Chris Kresser:  I’d love to start with your background. Talk a little bit about that. You have a PhD in integrative medicine. But initially you were a certified physician’s assistant working in emergency medicine, which is pretty far from what you’re doing now. Talk a little bit about what led to that transition in the first place and how you made it.

Dagmara Beine:  I was working as a physician assistant in the emergency department, which actually was a phenomenal background to have because I got to experience a little bit of a lot. Anything from heart attacks to runny noses, because everything comes in through the ER.  I was in the ER for about 10 years when my then three-and-a-half-year-old daughter was diagnosed with a rare form of leukemia called acute myeloid leukemia with a fairly poor prognosis. I was in medicine, but I definitely did not know anything about the oncology world. Just like every other parent, or really anybody who gets diagnosed with cancer, my world flipped and turned upside down and I was thrust into pediatric oncology. You don’t really get to take a breath.

My daughter’s name is Zuza. She started chemotherapy the next day, which I actually write a lot about in my book– about taking pause and not doing that. Really quickly into her treatment, little things started not feeling right. It was really the kind of formula they recommended that she [got] when she stopped eating and started becoming malnourished, and just looking at the ingredients of corn syrup and seed oils.  I wasn’t very what I would consider holistic back then. My knowledge wasn’t great. But I knew that was wrong. That’s really what snowballed me into wanting to do everything I can for her– realizing that conventional oncology [doctors] were experts in the chemo protocol or the radiation or surgery, whatever the course is, but they were not experts in the whole person, the whole child.

I went back to school and started getting certification after certification. Your program was the first one that I did. My daughter was diagnosed with cancer in 2015 and was in remission when I started your program. That was my first introduction to Functional Medicine. I haven’t stopped. I trained with Dr. Nasha Winters, I got my PhD in integrative medicine, I have done everything in every conference and read every book and every mentor to be able to become the practitioner that I needed when my daughter was diagnosed and I couldn’t find anybody to work with.

Chris Kresser:  I mean, that’s such a familiar story. It’s born out of our own need, whether it’s a health problem that we’re experiencing ourselves or something that our child or children are experiencing. We find the available options to be limited or lacking in some way and then feel motivated or driven to address that.

Speaking from personal experience, and having also trained hundreds of practitioners with similar stories, it makes sense to me that would be a path to a vocation that is meaningful and rewarding [and] filled with a sense of purpose, because nobody knows the problems and the shortcomings in a particular area better than someone who’s experienced those firsthand from the patient’s perspective. Then it gives you, as the practitioner, a unique ability to empathize with the people that you’re interacting with, because you’ve been on the other side of it. As difficult as your experience has been, I imagine that offers some comfort to your patients and the people that you work with, because they know you understand what they’re going through.

Dagmara Beine:  Yes. Yes. Our story unfortunately didn’t end in 2015. Zuza has been my biggest teacher because we’ve been through diagnosis, we’ve been through multiple relapses, we’ve been through bone marrow transplants. I keep telling her, “We can stop learning on you now. You can be done and healed.” But yes, there just wasn’t anybody that I could find that specialized in integrative pediatric oncology.

There’s a lot of books and there’s a lot of practitioners who specialize in adult integrative oncology. But pediatric oncology, I think a lot of practitioners are afraid to step into for multiple reasons. One of them being the medical legal messiness of it all. Because in this country, [and] in multiple countries, if you’re 18 or under [and] you get diagnosed with cancer, you have to do the treatment that is recommended, or what is considered ‘standard of care’. You can’t, like an adult in this country, choose to decline any of the conventional treatment or pick and choose how you want to heal yourself. I think a lot of practitioners, if they don’t need to, don’t want to be in that world. Plus, you’re not just taking care of the child, you’re taking care of the whole family, truly.  My interactions are 90% with the parents. And some with the child, but you’re really truly taking care of mom and dad. Most of the time, mom and dad potentially may feel differently about how much integrative care they want their child to have. It becomes something that walking through it obviously has helped me so much to be able to navigate that with other families.

Challenges in Pediatric Oncology

Chris Kresser:  Let’s talk a little bit about the state of pediatric oncology and what your experience has been working with parents who are seeking an alternative. What do you see as the biggest shortcomings and things that are lacking in the conventional approach to pediatric oncology? Why is it that your patients seek you out, or what leads to disenchantment?  You can speak to this from your own experience [on] the patient side of things, and also as a clinician and the people that you’re working with.

Dagmara Beine:  Families come to me at different points of their journey. There’s families more so now than ever who are more holistic. There’s so much more information in the last five years than there has ever been. Maybe too much, and confusing information, but it’s out there. There [are] families who know from the get-go when their child gets a cancer diagnosis. Maybe they’re families who chose to decline some vaccines, or maybe their families just chose to walk that path already and they know that they want to continue walking that path when it comes to their child’s approach to their cancer.

I would say more often that’s not the case. More often the families that seek me out have started treatment and something goes wrong in treatment. There’s liver toxicity or kidney toxicity. It’s not even that the treatment isn’t working. It’s just that their child’s not doing well. Conventional oncology doesn’t have many non-toxic tools to help that. It can be simple things. I mean, it can be end organ damage [or] very complex things, but it can be things like rashes and diarrhea or constipation, that more toxic medications are thrown at, like MiraLAX and Imodium, and then there’s more complications. Many families will seek another way at that point.

Then the most common, [and] it’s changing a little bit, is when treatment isn’t working, or when a child has relapsed, or when they’ve been told that there’s nothing else that can be done. Then parents really start seeking that there has to be another way. It’s very unfortunate that it works that way, because just like [how] conventional treatment is the most effective and has the best chance when the child is in the best shape and the cancer is the smallest, it’s the same way with our integrative approach. You’re going to have more success with something that’s stage one or [when] the child has normal liver function and kidney function than you are when they’ve been through a year of chemotherapy, radiation, and surgery, and now their body’s tired and they’re malnourished. But that doesn’t mean that there isn’t hope. It just means that I wish all families would know that incorporating an integrative approach is going to allow your child to get through treatment in a better way.

It’s not about saying, “This is a cure.” It’s just about [that] there’s a better way. There’s a better way for us to go through chemotherapy, to make it less toxic and more effective. There’s all these little things that we can do with the way we’re eating, and key supplements, that can help your child have much less symptoms, whether that means a cure for some families, and [for] other families it just means a less toxic journey.

Root Causes and Contributing Factors

Chris Kresser:  In Functional Medicine, as you know from all the training you’ve done, including my program, we’re often looking for the root cause of a problem. If a patient comes in [and] they have pre-diabetes, and they’re overweight, and maybe they have hair loss and thinning of the outer third of their eyebrows, you’re immediately starting to think of what some of the root causes might be. Then you might have a conversation about their diet and their lifestyle and things like that, because we know that those are probably the driving factors in their pathology. With pediatric cancer, I’ve always had a harder time applying that same lens. Certainly we know from research that there are established risk factors like exposure to environmental toxins in utero, genetic predisposition, [and] other environmental factors that can perhaps manifest pretty early on in life. But the reality is, it seems to me that there’s still a whole lot we do not understand about how a child, and sometimes a very young baby, can develop cancer. It conflicts with this idea that we have these environmental, lifestyle-driven diseases that typically take decades of exposure to a particular environmental factor before [they] manifest.

Most people, even if they have a horrible diet, don’t develop type 2 diabetes until they’re in their 30s and 40s. Now, of course, that’s getting younger and younger all the time. But it’s still generally true. I’m sure you’ve had a lot of time to think about this, just from your own experience, and then also in all of the patients that you’re treating. What is your sense of this at this point?

Dagmara Beine:  I’m so glad you brought this up because it is [something] people have a very hard time understanding. It’s easy for us to understand why an adult would get cancer. We think about the simple things– the food they ate, maybe they smoked, maybe they [drank] too much. We can make sense out of it. But when I start to talk about that pediatric cancer is not bad luck, I actually have a lot of people that get very angry, because they think it’s about blame. And it’s not about blame. We know from studies, and definitely I can speak to my experience, that our epigenetics that we’re born with and the state of the toxicity of environmental factors right now, together, is the main cause of, I would say, most pediatric cancers.

I break it down. The way I explain it to parents is, if your child is a fish in a fishbowl and it gets diagnosed with cancer, we take it out of the murky water and we fix it. Whether we fix it with chemo or with mistletoe or high-dose vitamin C, it doesn’t matter. We fixed it. If we [put] that fish [back] into the same murky water, it’s probably going to get sick again. The murky water is the environmental factors. I talk about epigenetic factors and I have every single one of my patients epigenetic testing. It’s a really big one for me. I can talk a little bit about some of the most common epigenetic [single nucleotide polymorphisms] (SNPs) that I find in a lot of pediatric cancers. Blood sugar dysregulation, unfortunately, is becoming so common in the pediatric population. The toxicity of our environment, especially glyphosate, but the glyphosates and the plastics and immune system dysregulation. All the Tylenols, inflammation, all the steroids that the babies are now using for their eczemas, some hormonal, like all the xenoestrogens and birth controls, and then stress and mental.

I have a patient take a quiz that helps me assess what top three factors were probably helping contribute to this child’s diagnosis. If it’s their microbiome, because they were a C-section baby and then they had five courses of antibiotics and then tubes, it’s not saying that’s the one thing that helped create their cancer. I think of it as [a] puzzle. All these pieces make a cancer diagnosis, just like when we look at somebody’s Hashimoto’s disease. It’s all these pieces that contributed to their diagnosis. Maybe it’s toxins. It’s the same for a child. It makes sense when you think about the fact that when they test umbilical cord, it has an average of over 200 chemicals and toxins that we find in most umbilical cord these days. They’re such little bodies. It starts in utero. It starts with the mom– did she detox before she even considered getting pregnant? With how toxic our world has become, it does make sense. What I see most [commonly] is key epigenetics. These hiccups that these kids have in their epigenetics that give them weaknesses to [things]. Glyphosate is a big one, and toxins, and then exposure to those toxins.

I’ll speak about Zuza. I will never be able to prove this 100%, but I think Zuza, my daughter, was diagnosed with leukemia because when I was in my 20s and I couldn’t get pregnant and I had a couple miscarriages, my OB-GYN said to me, “Take this. You’ll get pregnant.” It was Clomid. I didn’t research it. I just took it. The study’s really hard to find now, and I write about it in my book, but there are studies done that show that women who took Clomid and got pregnant, their kids had a fifty percent higher chance of having leukemia. I think that planted the seed for my daughter. Then we bought our dream home behind a cornfield. What was she exposed to everyday? The chickens that were there, the eggs that we ate and the garden that we had, it was all glyphosate. Then I gave her Tylenol because she had fevers. I gave her Tylenol because my ER training was [to] alternate Tylenol with ibuprofen.

When I tell this story, sometimes people will write me private messages and be like, “You shouldn’t blame yourself.” This is not about blame. That’s what I try to teach parents. This is about education and knowledge and knowing better. Because you know what? We moved. We moved houses. Now we don’t have neighbors that spray. We think about glyphosate. And it’s not a guarantee, but it’s empowering parents with the knowledge that there are things that help contribute to most of these diagnoses. I would say maybe five to ten percent of cancers that kids get, yes, they are genetic and maybe these kids had perfect [lives] growing up and were breastfed and didn’t have toxins. But for the most part, I can always find contributory factors for most of these kids.

Chris Kresser:  Yeah. It’s a really important point. There’s a difference between blame and responsibility. I’ve always been struck by the etymology of the term responsibility, which if you break it down, means the ability to respond. I might add “appropriately” too, as a hidden word or concept, as taking responsibility means being able to respond appropriately to reality as it is. In this case, objectively being able to recognize, “Hey, these are some factors that may have contributed to my daughter’s cancer and may still be contributing to her inability to recover.” We’re going to respond to these factors in the way that feels appropriate to us, given our circumstances and ability to do that, which is very different than guilt, shame, and blame, which in my experience keeps us stuck and unable to respond, mostly because we get stuck in this cycle of self-flagellation and blaming ourselves or blaming other people, and then that prevents clear-eyed seeing and [the] ability to respond effectively in that situation.

But I’ve worked, of course, with patients with chronic illnesses of all kinds. I’ve had my own long journey with chronic illness. I’ve seen this in lots of different contexts. I know there’s a linear relationship where the more serious the diagnosis is, the more difficult it often is for people to decouple the guilt, blame, and shame from the ability to respond in a situation. I imagine that’s a conversation that you often find yourself in with patients and families.

Dagmara Beine:  Yes. It’s hard because I would say 99.9%, if not 100%, of oncologists are saying, “This is just bad luck. There is nothing you did to cause this.” I know that in their hearts they believe that, and they’re trying to make the parent feel better. They believe in the somatic theory of cancer, which essentially says, “Cancer is bad luck.”

I try to explain to parents [that] we’re coming from a different explanation of cancer– a metabolic approach to cancer. I explain to them what mitochondria are and how the health of our mitochondria determines the health of us. It’s hard to make some parents understand that it’s not about blame when their oncologist is saying, “There’s nothing you did.” It’s much easier to hear that, and it’s much easier to not have to change everything in your world. It’s much easier just to be like, “Oh, we just have to do chemotherapy and radiation and we don’t have to change the way we’re eating. We don’t have to change air filters in our home or where we live.” I mean, it’s a lot of work. I think for some parents, it’s easier just to [accept that it’s bad luck]. Those aren’t the parents coming to work with me. But I know it’s much easier for some parents to say, “It’s just bad luck. My oncologist said so. We’re just going to get through treatment and then we’re going to go back to our lives.” That breaks my heart, because there’s so much that needs to be done through treatment, and there’s so much that needs to be done after treatment is done. I mean, these kids, if you can just imagine what their guts look like afterwards.

Learn about holistic options, epigenetics, and personalized care in pediatric oncology in this episode of Revolution Health Radio. #chriskresser #ChildhoodCancer #HolisticHealth

Epigenetics and Personalized Care

Chris Kresser:  Yeah. Absolutely. Let’s talk a little bit about, and maybe get a little bit more specific [about] some of the epigenetic testings for SNPs that you do. And let’s talk a little bit more about the most common things you’re doing to support kids who are getting conventionally treated.

Dagmara Beine:  The epigenetic testing, like I said, is mandatory for me to work with a child, because it allows me to see their good and their bad SNPs– the ones that come up most commonly for kids that are very relevant through treatment. One we talk a lot about in Functional Medicine is [methylenetetrahydrofolate reductase] (MTHFR). Specifically, there’s a significant association between MTHFR, polymorphisms, and an increased risk of methotrexate toxicity. Methotrexate is a chemotherapy that’s used in a lot of leukemia treatment. [Acute lymphocytic leukemia] (ALL) is the most common type of leukemia. [It’s] very curative, 98%. It’s a very long treatment. But for example, if I know a child has MTHFR and a very specific polymorphism, I know that their risk for having hepatic and gastrointestinal toxicities is so much higher. [So] I’m really doubling down on what I’m doing to protect their stomach during treatment. I know that their platelets are going to fall much harder. I know that they’re going to get more severe mucositis, and there’s phenomenal things you can do to prevent mucositis, like photobiomodulation [and] red light therapy.

MTHFR is a big one. Another one that I see come up in kids a lot is Pan1. Individuals with this mutation have an 82% higher risk of organophosphate toxicity. So many kids diagnosed with cancer have this PAN1 epigenetic hiccup. The beautiful thing is [that] by just giving them quercetin, you’re decreasing that toxicity by like 148%. Then we know that a big part of their overall treatment and health is going to be [using a] sauna. Sauna with binders and glyphosate testing.

Those are two big ones that I look for. The things that are very important [as to] the second half of your question, what do we do during treatment? I’m looking at a child’s labs. I’m looking at their epigenetics. I’m looking at exactly what chemotherapies were prescribed. This is very important. We know from adult studies that if we fast an adult through their IV chemotherapy infusion, we can reduce their side effects by up to 80%. We can’t fast kids, because social workers would get involved [very] quickly. But we can mimic fasting by putting them into a state of ketosis during that IV chemo infusion. Kids are so easy to put into ketosis. It’s no big deal for them. They can almost essentially eat a normal healthy diet and you just give them a little bit of exogenous ketones and they’re in ketosis. That is the one place I love ketosis as a therapy. I have all my kids [in ketosis] on the day of their IV chemotherapy. The day before, the day of, and the day after. Or radiation, I have them do it through ketosis, because we can not only reduce their nausea and vomiting and all the things that are happening that day, but I really believe that we’re helping protect their healthy cells and potentially reducing late effects later on, because 95% of pediatric cancer survivors have late effects.

Also, there’s very specific supplements that help specifically with the type of chemo you’re on. I’ll give an example. Doxorubicin is a pro-oxidant chemotherapy. It’s very toxic to the cells of the heart. It’s a chemotherapy that’s often used in pediatric cancer. Something as simple as grapeseed extract can reduce the potential of that toxicity now and later on in life by 80%. Omega-3s have been studied in pediatric oncology patients. Just giving omega-3s through treatment is going to reduce toxicity and help malnourishment. These aren’t incredibly invasive or incredibly out of the box therapies. Some of these can be very simple key supplements– vitamin A, D, K, omegas, and then, depending on the chemotherapy, more specific supplements to get them through and respond to what their body’s doing. If we see that their liver enzymes are going up, we’re going to maybe pulse glutathione a little bit more. Maybe we’ll use milk thistle if we can, [or] castor oil packs. Just really working with the child individually and how they’re going through treatment. It makes a really big difference. We can actually prevent mucositis in all kids, even through bone marrow transplant. I figured this out with my daughter. They said I couldn’t do it. They said they’ve never seen it done. We did it. Unfortunately we’ve had three bone marrow transplants, and we keep doing it. It’s simple things. It’s some supplements keeping her in ketosis. I’m in love with photobiomodulation for everything lately. It’s phenomenal for helping prevent and heal anything going on in the mouth.

I think that’s also important for parents to know. I think when they think about a holistic or integrative oncology approach, they think we’re doing really weird stuff. Some of this stuff can be very simple, and sometimes it’s infuriating that it’s referred to as integrative, because good nutrition is not integrative. These supplements, there’s nothing integrative about them. It’s just what your child deserves to get through treatment that isn’t taught or known by conventional oncology. They tell everybody not to do anything because they don’t know.

Chris Kresser:  Yeah. Or they’re not current with the scientific literature.

Dagmara Beine:  Not at all.

Outdated Practices, Common Sense, and Intuition

Chris Kresser:  Yeah. We just went through this in a totally different context with my daughter. She had a pretty serious degloving injury on her pinky that was almost severed about halfway down in an equestrian accident. Fortunately, there was a very talented hand surgeon here who was able to reattach it. But the post-op wound care was … I would almost say barbaric, in the sense that this is not my area of expertise, but I know how to research. That’s one of my superpowers. I also know a lot of people in medicine through my history and career. I talked to some surgeons that have expertise in wound care. I went and got the latest textbook in wound healing. The types of bandages and dressings that they were applying in the surgeon’s office in the post-op visits were things that had literally been left behind in the 1970s, at least in terms of the textbook approach to wound care. They were still, for example, trying to keep it dry. Whereas we know that keeping it moist creates a better [outcome]. You probably know this as an emergency medicine specialist. It was shocking to me to see that. They were an incredibly talented surgical team, and I have nothing but gratitude for their almost miraculous work in reattaching her finger, which has thrived and is still viable. But that’s an example of how the standard of care, in this case, was 50 years out of date. Not five years, not 10 years, like 50 years out of date.

Dagmara Beine:  Yeah. It’s like that. My daughter was just inpatient and had a complication called [thrombotic microangiopathies] (TMA) after a transplant. I literally spent five minutes looking it up and I’m like, “Why aren’t we doing N-acetylcysteine IV?” They’re like, “We’ve never heard of that.” I’m like, “Here’s three articles. I want it started.”

Chris Kresser:  Right. It’s very disappointing when ChatGPT can give you better medical advice than the current standard of care. Because what is ChatGPT doing? It’s pulling from published literature. It’s not just [making it up]. It’s pulling from the store of published human knowledge and currently available research that anybody can look up, presumably including the current physicians.

This is a little bit of a soapbox thing for me, as you know. I don’t even necessarily blame individual clinicians, because they’re victims of the same system that we are. You know this from your background in emergency medicine. A lot of primary care doctors, or even specialists, are seeing an absurd number of patients per day. They’re working, and then they go home [and] have to finish all of their charting [subjective, objective, assessment and plan] (SOAP) notes, and they have a family and they want a life. When do they have time to come up with new protocols and do this stuff? It’s a systemic problem. Not so much a criticism of individual clinicians. But I’ve seen it in oncology and when I refer patients or they come to me for supportive care.

In so many other areas of medicine as well, there’s this huge gap between what the published peer-reviewed literature is saying and what the standard of care is currently. That was another question for you– what has the response [been], generally? I know it varies a lot, but [what has the response been] of the conventional practitioners when they find out that your families are working with you?

Dagmara Beine:  I would say for the most part, the oncologists are not open to anything. I would say that’s the general consensus. I work virtually with patients all over the country. I’ve been able to work with some of what we think of as the top hospitals for pediatric oncology. It’s no different there. Very close-minded. Ninety-nine percent of the time saying, “Don’t do anything.” Once in a while I’ll run into an oncologist who wants to have other team members on [board] and is willing to read about the mistletoe therapy that I am begging the family to start because it’s osteosarcoma. We have a pediatric oncology study that showed mistletoe is 56% more effective than [the] chemo that they want to start.

I feel bad for the families that work with me, because I don’t want to tell people to keep what we’re doing a secret. Because there’s no secret to it. I’m happy to always talk to the oncologist. But when they say, “Don’t do anything,” and then you have these families who are stuck in the middle and you’re asking them to trust me and I’m this girl on Zoom with no white coat on, versus this institution of men in [a white] coat.

Chris Kresser:  Yeah. It’s scary.

Dagmara Beine:  It’s scary and it’s intimidating. I feel for the families because I can only ask them to trust me. But it’s not that they don’t get to know me as well as they get to know their team members. I really try to teach families. I teach them to trust their intuition. I think that’s a really big part of going on any kind of journey with your child, that you are their everything. You are their advocate. But I’m not going to pressure anybody. I’m always going to offer what I do for my daughter and the best, scientifically supported, experienced advice I know, and then it’s really up to them on what to do. We talked about some of the simple things. Ketosis is usually overwhelming for families, but some of the simpler things, some of the simpler supplements I think parents can understand. But when we get into [the] more out of the box things, I think that’s when it really takes a certain kind of parent, honestly. I usually draw that certain kind of parent. I don’t have a lot of families coming to me where I’m convincing them.

Chris Kresser:  Right. They’re just not coming to you in the first place.

Dagmara Beine:  Exactly.

Chris Kresser:  This is current for me because of what we just went through with my daughter. Of course, I’m someone who is not the typical person in this regard. I have training and I have a lot of experience going against the grain in terms of bucking conventional wisdom, both as a patient myself, going through my own health journey and seeing the benefit of doing that in my own experience, and then seeing the benefit of doing that as a clinician for 15 years with thousands of patients, and training doctors, et cetera.

However, I am a huge advocate of believing in common sense and intuition. There’s a thing that tends to happen, I’ve noticed, and it still happens to me, despite all of that experience that I just mentioned. For example, when they were applying big wads of gauze to her finger after the surgery, instead of something like Mepitel or silicone or [a] hydrogel bandage, which would be indicated by current practices and research, a moment of common sense and objective looking at a wound care textbook tells me this is wrong. But, shouldn’t they know what they’re doing? This is one of the top hand surgeons in Bend and his office. Surely, they know what they should be doing in this situation, because all they do is see people with wounds every single day, all day long, all throughout the year. I would think they had looked into the most modern approaches to wound care. You cannot make that assumption. On the flipside, you often can trust common sense and intuition, even if you don’t have a lot of domain knowledge or expertise in that area. I think that’s the key thing.

The parents who come to you and who are able to follow through with your recommendations are the ones that are able to do that, versus I think it’s harder to do that in a situation where you don’t have expertise because you think, “Well, maybe there’s something I’m missing and I can’t trust common sense, or I can’t trust my intuition in this situation. All of these experts have some knowledge that I don’t have that might invalidate my common sense or intuition.” I’m not going to say that it’s 100% reliable. But I will say, in my life, reflecting even in areas where I don’t have expertise, like in wound care, the intuition and common sense are often very reliable. If you’re able to trust that, then it will take you pretty far.

Dagmara Beine:  Yes. Yes. Those are the kind of families I switched to and created an application to work with me, because I feel like I don’t want people wasting their money or time when I’m going to tell you to do all this stuff and it’s going to be too overwhelming. It takes a certain type of parent to be able to listen to their intuition and know that something doesn’t feel right. And it doesn’t require you to be an expert in that field.

Support and Healing After Treatment

Chris Kresser:  We’ve talked about some of the approaches during treatment. But as you’ve experienced firsthand, and this is true with many chronic conditions but particularly with cancer, when the treatment isn’t necessarily over but perhaps [it’s] the end of chemotherapy or whatever conventional treatment is happening, more support is needed after that in many cases. What does that tend to look like for you?

Dagmara Beine:  In conventional medicine, you’re done with treatment. They have you ring a bell and they tell you you’re done. The outside world celebrates and brings you cakes and cookies and ice cream to celebrate. You’re done.

Chris Kresser:  That’s another conversation altogether.

Dagmara Beine:  Yeah. Yeah. I would say the first six months off treatment are almost harder than initial diagnosis, because you’re told everything’s done, everything’s good, and whether a family did integrative treatment or didn’t do integrative treatment, they’re just left starting to freak out [and to] think about relapse. They [now] have a child who just went through all this toxic treatment. Their gut is completely ruined. Their organs are tired. The mental [and] emotional vibe and frequency of the whole family is completely disrupted. The [hypothalamic-pituitary-adrenal] (HPA) axis is dysregulated. The number one thing I tell families is that it’s okay for things to just not be okay for a while. I really refer to that mostly [regarding] the nervous system dysregulation. Everybody’s dysregulated. Everybody’s going to respond in their own way. Dad’s going to be sad in this way. Mom’s going to be sad in this way. A child, depending on their age, is going to act out this way. Then we talk about gut healing, gut healing, gut healing, gut healing. We need to heal that gut. It takes years to heal a gut after most treatments. I teach families what gut healing [entails]. Nutrition has to be on point. Then we teach them about the importance of the different probiotics and repair complexes, and we switch them out.

I don’t do any gut testing on kids within the first year of being done with treatment because it’s a waste of money because the gut just… it looks awful. Restoring the gut [is paramount], because if we’re not absorbing our nutrients, if we have a leaky gut, well, then we know all the symptoms we’re going to continue to have. We have so much healing to do. We can’t heal if we’re not going to close up those junctions and restore the microbiome.

Also, detoxifying. And I know it’s such a sexy word right now. Everybody’s talking about detox teas and detox that. I teach families [that] our body is so awesome. It’s always detoxifying. But we need to step things up now, because we probably still have all this chemotherapy [or radiation] left over in our fat cells. We talk about [doing it gently], because some of these kids are two years old. I mean, some of these babies are six months old. We talk about saunas. [That’s] a really big one for me. I don’t think anything compares to sauna when it comes to detox. [We talk about] the different types of binders we could use. Then we talk about some of the more gentle ways of detoxifying, like rebounding. I think it’s great for kids because it puts stress on their growing bones..

We continue all the testing. We’re gut healing. We’re detoxifying. We’re working on helping them emotionally. I’m usually not a huge fan of talk therapy. I think that it may help some people, but I feel like we get stuck just talking about our problems. I tend to point families towards things like sound healing and nature and, depending on what state you’re in, maybe microdosing and some of those things that I feel help families more than just being a therapist and talking about the fact that they just went through cancer treatment.

So we’re gut healing, we’re detoxifying, we’re working on their nervous systems, and we go back to, “Why did your child get cancer? What were those top three things?” Oh, it was their microbiome. Okay. Well, we’re working on gut healing. Oh, it was toxins. Okay. Well, let’s do toxin testing now. Let’s see what those toxins were. Oh, it’s glyphosate. Where is it coming from? [Let’s work on] getting air filters in your home and just a lot of education about what we can do to make [your] home less toxic. Or maybe it was blood sugar dysregulation. [Let’s work on] really honing in on the diet and key supplements. It takes a long time for a child to heal. I would say it takes a full year, for most treatment, for a child to have a healthy gut [and] to not need real, real, every three months support.

Then every six months to a year, we do testing. We do gut testing. We do toxin testing. We look at all the things that helped contribute to the cancer and make sure that they’re not starting to creep up on us. None of that is mentioned in conventional oncology. I mean, think about how long ago we learned about the microbiome and the fact that you can have a leaky gut. There’s absolutely no reason this isn’t part of care in conventional oncology, [where] somebody’s saying, “You know what? We need to heal your kid’s gut now.”

Chris Kresser:  It’s the same reason that they’re still putting gauze on wounds post-op. I mean, I wrote about this in my second book, Unconventional Medicine. The image would be like the largest supertanker in the world turning around, but imagine that’s happening on a timescale of years rather than hours. That’s the situation that we’re in. Unfortunately, there’s so many reasons for it, and it seems so dysfunctional that, especially in something this vital and important, there wouldn’t be a mechanism for making sure that clinicians are up-to-date with what the latest research says. We’re not talking about woo-woo, completely unproven stuff here. We’re talking about things that are in published peer-reviewed literature that are really not that controversial at this point, even being taught in medical schools and in continuing education courses. If you were to consult with some of the top experts in the field, they would agree with you wholeheartedly. But it’s just this lack of penetration of those ideas down into the average primary or specialty care settings that is just so enormously frustrating for patients and clinicians alike.

Dagmara Beine:  Yes. Ninety-five percent of kids who go through treatment and have survived get a late effect. A late effect is relapse or congestive heart failure [or] liver disease. I mean, these are big secondary effects. I really believe that if kids could go through treatment in a better way, and if we work on healing their guts and healing their body and detoxing and keeping an eye on them with more in-depth testing than the random [complete blood count] (CBC) they’ll run, I really think we can decrease those late effects in kids. Not just secondary cancers, but all of them.

They have these survivorship clinics. They call them survivorship clinics once you’ve reached, I don’t know if it’s three or five years, and all that could be done in these clinics. It’s literally just seeing a patient once a year, doing maybe a CBC and a [comprehensive metabolic panel] (CMP), and maybe a heart [echocardiogram]. [But] no education. They’re being told that’s what a survivorship clinic is. They’re doing something and it’s not enough.

Chris Kresser:  Not enough. Yeah. Well, Dagmara, thank you so much for sharing your experience and your insight and wisdom. This is such an important area of medicine that has really been neglected, as you pointed out. There’s really not that many places to turn for parents who want to pursue a more integrative or holistic approach to cancer care for their children. I’m really happy that you’re out there doing this work and helping people. Let everybody know where they can learn more about your work and follow what you’re up to. If they’re in a situation where they might need your help, how can [they] do that?

Dagmara Beine:  Yes. The easiest thing is [that] my book is finally out. It’s called A Parent’s Guide to Childhood Cancer. It’s on Amazon. Super easy to get. It’s an easy guide for parents. They can open any chapter to whatever phase they’re in with their child. For more support, my clinic website is Zuzasway.com. We do have a few different ways and programs that they can work with me. In June, I’ll have a pediatric oncology course coming out, where I can support parents in bigger groups and take them through a course and get into the nitty-gritty of some more out of the box things than what I wrote about in the book of different ways that we can support these kids.

Chris Kresser:  Excellent. Thank you so much, and thanks everybody for listening. Keep sending your questions to chriskresser.com/podcastquestion and we’ll talk to you next time.

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