Rebecca: I think just because it was so shocking, my mom being young and healthy and vibrant one minute and then things changing literally in minutes, that having a baby right after that, I don't think I'd really processed. I was so scared all the time. And then I ended up having four kids quickly and I was always worried about them, always worried about their health, always trying to do everything I could to keep them healthy and safe and yeah. It's only hindsight that you can see how anxious of a mom I was.
Dr Rupy: Welcome to the Doctor's Kitchen podcast. The show about food, lifestyle, medicine and how to improve your health today. I'm Dr Rupy, your host. I'm a medical doctor, I study nutrition and I'm a firm believer in the power of food and lifestyle as medicine. Join me and my expert guests where we discuss the multiple determinants of what allows you to lead your best life.
Dr Rupy: In February 2018, Rebecca Divine, a mum of four children, was diagnosed with glioblastoma, or GBM. It's an aggressive form of brain cancer and she was given just 12 to 15 months to live. Remarkably, in 2025, she's still here. And today, we're going to talk about her incredible story from diagnosis and treatment to continual perseverance and ongoing health. I met Rebecca recently at a small gathering hosted by Dr William Li, friend of the podcast, for his Angiogenesis Foundation, a nonprofit whose mission is to beat cancer by targeting blood vessels that feed tumours. And it was there that I first came across her incredible story that I'm privileged to share with you today. We talk about how Rebecca's first experience with cancer was over 20 years ago when her mother was struck with the same diagnosis and the emotional and physical journey Rebecca went on since 2016. We talk about her blend of both conventional therapy and diet, as well as lifestyle pursuits and the novel vaccine-based treatment that she currently uses to keep her condition in remission. Peptide vaccine technology is an emerging immunotherapy strategy aimed at stimulating your own immune system to target tumour-specific antigens. GBM is aggressive and resistant to standard therapies, as we talk about today, and peptide vaccines hold potential for transforming treatment by leveraging the immune system for tumour-specific targeting. I also firmly believe that the use of novel treatments combined with Rebecca's tenacity, her mindset and unwillingness to give up is the reason why she's defied all odds and is currently thriving. I'm really glad Rebecca was open about her nutrition and how her journey involved cycling through plant-based, vegan, keto into ultimately what she feels works for her in this moment right now.
Dr Rupy: Rebecca, thanks so much for taking the time. I know we met a few weeks ago now as part of William Li's annual retreat for the Angiogenesis Foundation and I was just so touched by your story, but more so your reframing and the way you sort of dealt with what is a devastating diagnosis. But before we get into that element, I'd love to give our listeners and viewers a sense of you. So who is Rebecca Divine?
Rebecca: Well, thanks, I'm so happy to be here. And yeah, I think first and foremost, I think of myself as a mum. I have four kids and I grew up in a family with four kids and it just, that's my first and foremost thing when I think of myself. And in my day job, I have a design build business. We mostly do home remodelling. It's sometimes people call us the Chip and Joanna Gaines, if you know who that is in the UK. Locally. But, but that's me by day. And then, yeah, like you said, I had a major event that changed my life, but really it changed like 20 years ago because my mum had the same diagnosis I did and it was so shocking then. And just flipped our lives upside down and changed really who I was for so many years that I think in some ways it was why I've been able to face my own diagnosis.
Dr Rupy: Got you. Let's talk about your mum and that experience actually.
Rebecca: My parents were really young when they when they met. They met in high school and they got married and had four kids really quickly in their early 20s. So when I was 25, my mum was really quite young, very active, I mean, no health problems. And two days before Thanksgiving here in the US, she was at the grocery store shopping for food for Thanksgiving to host and they thought she had a stroke. So my dad called me, horrified, shocked, rushing to the hospital and ultimately we found out it was a seizure because she was diagnosed with brain cancer called glioblastoma. And it was, it was awful. I mean, it was the worst thing that had ever happened to me in my life. I mean, just because my parents were young, their parents were young. I had four grandparents. I don't think I had ever been to a funeral before my mum's, which is kind of shows the charmed life that I didn't realise that I had. It just felt normal until it wasn't. And then things were really hard. I quit my job, I took care of her. My dad, my parents ran their own business, similar to what I do, remarkably. And they needed help. So that's what I did and unfortunately my mum only survived 18 months. And so it was scary. And so my, at my mum's funeral, I was pregnant with my firstborn, six months pregnant. And I kind of thought maybe in some ways this was going to save our family. I would start a new family, everything was going to be okay. And I don't think I realised what an anxious mum I was going to become. It was so scary being, I think just because it was so shocking, my mom being young and healthy and vibrant one minute and then things changing literally in minutes, that having a baby right after that, I don't think I'd really processed. I was so scared all the time. And then I ended up having four kids quickly. And I was always worried about them, always worried about their health, always trying to do everything I could to keep them healthy and safe and yeah, it's only hindsight that you can see how anxious of a mum I was.
Dr Rupy: Yeah. And and how old was your mum when she got her diagnosis?
Rebecca: She was 50.
Dr Rupy: 50. Wow. Yeah. Wow. Yeah.
Dr Rupy: And when you say you were an anxious mum and you were trying to consciously ensure that you and your kids were as healthy as possible, what what does that look like for you? What what were you actively trying to do?
Rebecca: I mean, some of it was just that hypervigilance. If if I didn't have eyes on at all time, like I felt this responsibility that if I turned my back, if I wasn't there, something could go wrong. Even if grandma was with them or dad, I just felt like it was my entire responsibility to keep them alive for some reason. And and so for a long time, it was just a lot of fear, a lot of worry, a lot of, you know, Googling things, what does this mean? I remember one time, it's so embarrassing. I one of my kids fell off a chair and hit her head and threw up. And I called 911 right away. Well, she had just been drinking a bottle. She just kind of and they were kind of like, are you okay? So that was kind of the beginnings of my mothering. And and then, you know, the what I kind of leaned into to sort of feel like there was something I could control because I needed to control something was food. So I was just really big on what I fed them, making homemade baby food, really trying, you know, and there's always conflicting science about what you should be doing, but nursing and then just feeding my kids really well when they were little and trying to protect them from from any disease or cancer.
Dr Rupy: Yeah, yeah. And do you, I know you you're just talking about how you were quite hypervigilant and as a mum and it's only through retrospect that you actually realise the hypervigilance and perhaps the anxiety around it. But do you do you regret any of that or do you actually think that you set your kids up for healthy relationships with food and and lifestyle?
Rebecca: That's a good question. I I regret that I didn't for myself, that I didn't enjoy the early years as much as I wish I had. And maybe a lot of parents feel that way because you are sleep deprived, you are stressed. I did have, you know, a baby, you know, nursing and one in a sling and one running over there and hoping they wouldn't fall at the park or whatever. It was a lot. But I regret that for me that I didn't enjoy them as much as I as I wished that I had. Maybe in the future as a grandma, I get to do that, hopefully. But for them, I don't think they experienced it that way. I talked we have a very open relationship, so I talk about that stuff with them now because they're young teenagers and yeah, so I do, I appreciate you saying that because I do feel like in a lot of ways I did set them up for success with food. They don't always make good choices. I mean, I have seen the Mountain Dew can in the car. I'm not going to lie. But there's balance. You know, there isn't going to be, I'm hoping when they go away to college, there isn't going to be this free for all because mum's not watching. I'm hoping they're like, okay, I'm going to do this naughty thing, but then they're going to be like, I better eat a lot of vegetables.
Dr Rupy: Yeah, yeah, yeah. Yeah, there's the balance that you probably instilled in them, you know. I mean, even from my experience, my mum was really into health. She had her own health issues actually when I was growing up, when I was about 11, my mum had immune issues. So she would suffer from idiopathic anaphylaxis. And that took her on her own health journey. And as a side effect of that, our meals got a lot healthier. Our meals got like, you know, really enriched with all these wonderful ingredients that we hadn't seen before, things like flax, linseed and all the stuff from the health food store and and and I I vividly remember that experience and I think part of that experience is what led me to the food as medicine world, sort of buried in in the depths of my my memories, as well as my mum being a lot more proactive with me. So I I mean, from the outside, it sounds like your kids will have had some of that instilled within them, those healthy habits that unfortunately a lot of kids just don't get exposed to these days, right?
Rebecca: Yeah, that's absolutely true. And in retrospect, even my sister and I were talking about this because we saw each other last week and we grew up very much in a diet culture household. Lots of really awful things in retrospect from like slim fast to, I don't even remember, snack wells, like all the fat free stuff, like the fat free chips and everything. And all the processed food and all with good intention, but really kind of reframing that for our this next generation, not because of what happened, there's a gift in that because heaven forbid I would have passed that on. That's definitely not healthy.
Dr Rupy: Yeah, yeah.
Dr Rupy: So so let's fast forward a bit. You know, you've got four kids. What are you working for yourself at this point or are you what where abouts in the country are you living?
Rebecca: So I live in Minnesota, so we're in the heart of the Midwest, a little north. And um, yeah, so I have my own business. We have a design build business. We do home renovations. And that's going well. I mean, it's just small, me and my husband and it's, you know, we love it. And then, um, and then I'm leaning more into trying to tell my story and help empower others who've faced a really scary cancer diagnosis. So I have my own podcast and I'm doing some some speaking events and some writing and just really hoping that my story will inspire others to to fight, you know, hope changes everything. And so that's that's really feels like a calling to me. So I'm leaning a lot more into that as a more full-time effort.
Dr Rupy: Yeah. Let let's go to around that time when when you were diagnosed. What what actually happened at that point? There was an incident that sort of triggered everything.
Rebecca: Yeah, the car crash that changed my life. Um, I, yeah, I was at a yoga sculpt class that morning. That's what I did every morning. I don't know if you have those classes there, but we it's super intense. I'm kind of like a go-go person. So it was like a way for me to do yoga on my terms, right? So it's like heated, cardio, weights and yoga all mixed together. So that's what I did every day.
Dr Rupy: And Rebecca, I'm going to I'm going to just ask you a quick question about that. So because in my mind and I'm sure the listeners' mind now, we have an impression of the kind of person that you were, very healthy, proactive, exercising, you know, let's dive into that before we talk about the car crash actually, because I want to give folks a sense of what your diet was like, how proactive you were about fitness and exercise, because I think this is really, really telling. Would you mind talking to us a bit about that?
Rebecca: Yeah, absolutely. I, um, ever since, you know, my mum got sick and things moved quickly, I was really grasping at trying to to do something, you know, when the doctor said they couldn't, I really wanted to find something. So I remember even way back then, I found a book, um, about a diet that could kill cancer, that could cure cancer. And I read it and I wanted her to do it. But unfortunately, her brain cancer progressed really quickly. But I, I myself started doing it. I at that point it was like a vegan, raw vegan diet and so I did that for a while. And then just as we all kind of know, there are all different experts out there saying what to do. So I did bounce around quite a bit, you know, Mediterranean diet, you know, but I was always trying to like seek out what was be the best way to eat and the best way to keep myself from getting cancer, right? Probably the stress part wasn't good, but the physical part I was doing, I was I was nailing it, I think. So I was eating super healthy, lots of fruits and vegetables, bouncing around different kind of diets, but then, um, if I look back, I can see that I was also pillar to post, go, go, go, go, go. Super mum, start a business, you know, super intense fitness classes. Um, all with good intention, but, um, in some ways, I think that that was when, you know, in a lot of ways, I was I was putting my armour on preparing for battle without knowing it. But in other ways, I can see that that super intensity and that, you know, the way that I was living with so much anxiety that I didn't recognise until it was gone, um, that was probably a little bit of the downfall.
Dr Rupy: Okay. I I have a clearer sort of picture. I don't want to make too much of a generalization here, Rebecca, but like I I I understand the reasons behind the intensity, obviously seeing what your mum had to go through, but you're super fit, you're exercising, you're trying all these different classes, you're doing a million things at once, you're running your own business, you're eating fruits and vegetables, you're generally Mediterranean, but I I'm it sounds like, you know, you're bouncing around from from different things. When when your when your mum was going through her, um, treatment, did you did was this like a battle with your mum? Like were you trying to introduce some of these foods or these dietary, um, interventions, uh, and and was there any resistance there or or did it just progress too fast?
Rebecca: Yeah, a little bit at the beginning there was resistance. I mean, when I brought it in and I was like, we're going to do this 14-day juice fast, we're going to, you know, detoxify the body, then we're going to eat this certain way, we're going to eat this vegan diet. Um, you know, I mean, I I can't I can't criticize. She was she had just had brain surgery, she was on dexamethasone, so she was really hungry. Um, and it just I was met with a lot of resistance. And then just culturally, I think everyone was saying, you know, you're going to be on chemo, we're worried about losing weight. Like this isn't, you know, my mum was a fit person too. And they were like, you need to eat whatever you eat. So it was just kind of almost force feeding, you know, get whatever calories we can get in. And, um, so I was met with a lot of resistance, all with good intention. And I was young, I was in my 20s and I, you know, but, um, that that didn't land. Not with the family.
Dr Rupy: I can imagine. Okay. Um, and sorry, yeah, I cut you off. You were just back from a class. What year was this? When when?
Rebecca: So this was 2018 on in February. Yeah. So I was just, I was in my yoga class and I know I told you this at the presentation, but I remember like the room has mirrors across the front and you're holding these yoga poses. And I remember I kept seeing that swirly thing that happens on your iPhone when it's trying to load an app, but it was like popping up all over in the mirrors. And I was like, oh my gosh, what is going on? And I mean, I just thought I'm dehydrated, I overdid it. I should sit down, check my, you know, I didn't have a heart rate monitor at that point or anything, but I was like, something's up. And then, you know, kind of passed and didn't think much of it. And then when I got in my car to drive home, um, I called my husband on speaker phone and I was like, I don't feel right. And I was kind of talking to him and then I remember the last thing I said was, I can't tell if that light is red or green. And that was the last thing I said. I mean, I can only imagine how he felt on the other end of that call. And what happened is I had a seizure behind the wheel. I went across a lane of traffic and crashed into a snowbank. That's that's when I'm like, okay, the only time I've loved living in Minnesota in February was 2018 February because, yeah, that saved my life for sure.
Dr Rupy: So the snow, the the thickness of the snow.
Rebecca: Right, that like I just kind of glided through snow and, you know, until I until I stopped and, um, because I was completely unconscious behind the wheel, which is just terrifying to think about. Um, yeah, so then I was I was picked up in an ambulance and taken to the hospital and they couldn't figure out what's wrong with me. I mean, all my blood tests were normal. I was healthy. Like there was just really nothing showing up. And so, um, I was kind of like, I'm fine. I overdid it at class. Just, you know, I I really thought I was, but they were like, no, this doesn't just happen to a normally normal healthy person. So they kept doing tests and so they did like CT scan and MRI, they didn't see anything. They did, um, what's the EEG, the one that they strap all the things to your head. Yeah. So they did that and they weren't finding anything. And then, um, eventually one neurologist came in and was like, I'm going to do like a contrast dye MRI. And then when they did that, that's when they saw the tumour and, um, in my occipital lobe and they which is like right in your vision. So I had like it was like a visual seizure when I was driving. Um, and so that's how they found out that I too had grade four brain cancer.
Dr Rupy: Gosh. And um, and and what happened from then? I mean, I I I can't imagine the the feelings and, you know, something that you've essentially been thinking of and trying to ensure against for this entire period of time, you must have felt some sense of unfairness. Like I'm healthier, much more than the average American for sure. And yet I've still succumbed to this this illness.
Rebecca: You would think I would, right? That seems like the natural response and I don't this is where I feel like there's grace, there's my mum's my guardian angel. I don't know how you want to think about it. There's something bigger at play, but I didn't ever feel that way. I felt like, why not me? Why would I be the exception? You know, I never felt that way. I did feel like I'm going to do this totally different. I'm going to do all the things. I'm going to find all the best, most progressive care. I'm going to fight, fight, fight so my kids can see me fight. Um, but yeah, I I can't explain it. It really felt like it came from somewhere else, but I just felt yeah, this this sense of of why not me? Okay, here we go. Let's go.
Dr Rupy: Gosh, that's that's incredible. I mean, to to I mean, my initial reaction for you was like, gosh, this is so unfair, but like to have that foresight is um, it's so inspiring, Rebecca. And and I guess, you know, the next question is, how did you fight? Like what what was your did you did you come at it with a like almost like a pre-prep game plan of like, okay, this is what I'm going to do, this is the strategy or was it sort of like, where do we start from from here?
Rebecca: There's a combination of things. I think we can't minimize that that mindset that I had from the beginning where where now I look back and I say cancer saved my life because I was it was like some gift of anxiety being pulled away from my body. Like that that clenching, the ten and two of the wheel of of life just faded away at that point. It was like, I can't operate this way. That's not the way it's going to work. But I did want to know and want my kids to see me do all the things. And I knew I was going to be brave. So for sure, I leaned into diet. I started buying every book there was on, um, brain health, cancer, diets for cancer. So I I did that right away. Um, I had two girlfriends, one who's a science, science nerd, beautiful little science nerd who, um, was like, I'm going to research every, you know, getting on the government website, I'm going to find every clinical trial, I'm going to find something out there. And so I think those those are the things that we did, the mindset, the food, and then like the progressive, what's out there. And and so, you know, I saw six neuro oncologists before I even started, like there's a six week, um, standard of care that you do after your brain surgery. And I was, you know, I flew around, I went and saw people because I knew, I knew, you know, they they actually told me in the hospital 12 to 15 months, but I already knew what this was going to look like if I did it kind of the standard way, what it was likely to look like. Um, so my girlfriend found that Duke University had a polio vaccine trial, which I thought was so fascinating. I mean, there were videos about it and this woman was flying in and getting a shot and coming back and going back about her day and like living like a normal life. And just that like first glimpse of like, okay, there's a possible, there's a possibility. Like there's another side, another way this could work. Um, and I love that it was about using your body's own immune system to fight cancer. You know, we all think of chemo and like, you know, poisoning the cancer and trying not to hurt your body too much in the process. Um, and I loved that concept in general. It just felt so futuristic and like, I hope this is the future of cancer, not not the poison, not the chemo, which thank God for it, saved so many lives, but like, I hope this is the next phase of cancer treatment. So, so I decided that I was going to go to Duke and do that. Um, met with great people there. I mean, they just like exude hope, which was so nice and refreshing compared to the other places that I went that, you know, it was like borderline hospice, right? And so, um, but I I wasn't, um, I didn't qualify. My mutations or I don't remember exactly why, um, I didn't qualify. So like everyone else, they said we have to wait for a recurrence, which is sort of inevitable with glioblastoma brain cancer is that, um, even though they think they got it all and they don't always aren't able to surgically remove it all, but I had a really good resection. But usually there's sneaky cancer cells that infiltrate beyond the borders within a few weeks or months and or other tumours pop up. Um, and remarkably that's never happened for me. So, but but I wasn't going to wait for a recurrence. I was like, there has to be something, there has to be something. And then they told me about, um, very reluctantly where they're like, there's this one thing, but it's kind of crazy. We don't know if it'll work, but it has potential, but you have to fly to Germany a lot.
Dr Rupy: Before we get to that bit of the story actually, I want to give folks a sense of glioblastoma and the type of cancer it is because not only is it a rare type of cancer, but it's particularly aggressive. Uh, it's a a brain cancer. Um, those symptoms that you were you first were diagnosed with are fairly common in terms of the the first, um, presentation, seizures, visual changes, um, loss of of of muscle function because of the the seat of where the cancer is. Um, but you you alluded to it earlier with your mum's experience and what you were told about the treatment that the typical survival is around 12 to 15 months if I'm not mistaken. And there hasn't been a stepwise change really in that survival bar the improvements in surgical procedures to minimize side effects of the surgery and the chemotherapy agents that we use haven't really increased survival much at all. Um, so I I want to give folks a sense of of of just not not to overly catastrophize, but it is dire in terms of the the prognosis for this condition.
Rebecca: I really appreciate you saying that because it's so important. It's it's something I'm so passionate about that the standard of care treatment for this disease that is universally deadly that's considered the terminator by people in my world. Um, the standard of care treatment of six weeks of concurrent radiation and Temodar, um, has not changed for 30 years. It hasn't changed since my mum was diagnosed. It's the same. And that's really hard to witness. I mean, you've seen so much, um, change in terms of breast cancer, for instance, and I know it affects so many more people, but I I just want more attention brought to the fact that that's that's the same treatment that they're offering. And not only that, but most of us have what's called, um, there's a methylation status that they do and my tumour was had was unmethylated. And it seems that most people I talk to have that same status, which means it will not respond to chemo. Yet they still they say we still want to offer you chemo. And I I understand and you, I'm sure have a better understanding as a doctor, like you want to give everybody a fighting chance. But and we can talk about this later, but, um, but there's some concern that that it causes hypermutation that taking the chemo if it doesn't actually destroy the tumour cells can have, you know, an effect in which the tumour cells continue to replicate in a way that you can't even chase after them because the mutations keep changing. Um, so I really want that looked at. I want I want people aware of that and I want that to change.
Dr Rupy: Yeah, yeah, yeah. I I I I appreciate you saying that as well because it is the unfortunate state of a lot of different types of cancers, which is why, you know, not only is your story so unique and I want to amplify your voice as much as possible, but the possibilities within the field of cancer therapy really need to look at, um, these weird and wacky sort of, you know, modalities that I think will become commonplace over the next few years just because it makes sense and there is some preliminary data that we'll talk a little bit about a little bit later on that shows the, um, efficacy of of these, um, of these new treatments. Um, so to to give to give folks again this idea, so you you have this diagnosis, you have the contrast investigation, the imaging that demonstrates where and the size of the tumour. How quickly between that diagnosis were you rolled into neurosurgery to have the, uh, tumour tumour removed or debulked?
Rebecca: Right. Um, 24 hours maybe or less. I mean, as soon as they see it, so they don't know what kind of tumour it is. They know there's a tumour, um, until they go in and do a biopsy or a full surgical resection, which I was lucky enough to be able to have and I had a wonderful surgeon. Um, you know, when you end up in an ambulance in a hospital, you don't know, you don't get to pick your surgeon and it's brain surgery and I look back and I think how lucky and grateful I am for that. But that's what happens. So they they see the tumour and then they're like, well, we're going to go in and do a biopsy or or remove it if we can. And then they do testing to understand what type of tumour it is and and that's when I got those results back.
Dr Rupy: Gotcha. And, uh, again, just to give, um, our UK listeners a bit of, uh, insight into the American system because it is very different. The fact that you are able to go to different neuro oncology, um, uh, clinics and actually discuss different treatment options is quite novel compared to the NHS where we have a standard of care and we try and introduce, uh, uniformity in terms of how we treat conditions unless it's quite rare, like in the case of, uh, GBM, you may be able to find different treatments in different tertiary centres, but, um, generally you don't really get to shop around with the NHS unless you're going private. So can you talk to us a little bit about how you even managed to to find these different places and and figure out, okay, whether they were doing anything different within the chemotherapy regime or the, uh, research, uh, trials that they were doing using different, uh, agents?
Rebecca: We have a different healthcare system here. So we have medical insurance that you buy and then what you'll have is like in-network providers and out-of-network providers, which then you have to pay a certain level depending, um, on if it's in or out of network. So, you know, I landed at the hospital that was in network, fully covered, thank God. Um, but then, you know, you're saving your life, right? So I then found some remarkably Duke was in network, even though it's in North Carolina, half, you know, across the country from where I am. Um, it's just strange how it all works out that way. So, but then some of the like Mayo clinic was not, um, which is a renowned medical centre that's about an hour's drive away from me. So it's just it's bonkers how it all works out. But, um, but that wasn't at that point going to change what I did, um, until I ran out of all resources and money that I had and had access to from people helping me. So that's how that worked out. And so you can get online and there's, um, I think it's NIH.gov, but it's just a the government like localized website that talks about all the clinical trials available by, you know, um, diagnosis and where they're located and what they're doing. So we are lucky to I guess to have that. Um, and even there, they're they're pretty limited because glioblastoma is one of the worst. Um, and then and we can talk about Germany later, but going to Germany, the the laws are different in Germany. It's it's you pay out of pocket, but it's a not for profit. So what you're paying is a lot, but it's not like, like I look at, you know, the doses of things I'd be administered here in the US that, um, say a single dose could be $15,000. Well, I didn't pay anything. I just had to pay my max out of pocket and it was covered by insurance. But then you fly to Germany and get this miraculous vaccine and, you know, you pay out of pocket, but it's nothing like that, you know? So it's just so different like you said, country to country.
Dr Rupy: Yeah, yeah, it is pretty bonkers the difference in the cost of healthcare because to pay out of pocket in, like you were saying, in the US, it's exorbitant, but to pay out of pocket for the same products in Europe, uh, is far cheaper and that's just because of the inbuilt inefficiencies within the US healthcare system, which is why the the cost per capita per person is so much higher in the US. It really does need to be looked at, um, because yeah, it's it's it's quite wild. So I I'm glad we're talking about this because I don't think people appreciate that from the UK standpoint, just how different it is in terms of the the operations and and the sort of, um, uh, the process, but also the costs as well and the cost structure. Um, it's, uh, yeah, it's widely different. Um, so during this time, you've had your diagnosis, you've had your surgery. Um, are you not, uh, being advised by some of these oncologists from different institutions to start chemotherapy pretty soon?
Rebecca: You are. They they want you to start within four to six weeks after surgery. So they need a little recovery time. And then so that's like your window. If they say if you go past that, you know, then you start to risk getting having a recurrence or further growth or issues happening. So you have this like window. So a little bit of time to recover and I mean, I have to like it's hard for me to even think back without getting emotional because I'm so healthy now. Um, I have no deficits. It's just miraculous. But I, um, I mean, I'd have to like hold the wall and do like a step together, step together to get down the stairs from my bedroom into the kitchen for a while. You know, I couldn't and it wasn't because of a, I didn't have anything in my motor or muscular, I don't even know the right ways of saying where the the tumour was located in my brain, but just that aphasia and, um, and swelling in the brain that just kept me just it was awful, right? And and so I couldn't drive for a long time and I couldn't stand noise for a long time or bright lights. And so, so just to picture just feeling like that after being a super healthy person, navigating life like that, having four kids, um, I I just side story that we maybe don't want to talk about, but I just had gotten divorced in January and I had this happen in February. So if that doesn't highlight stress having an effect on your health, I don't know what does. But so I was a single mum, so to speak of four kids, although my ex, um, very much took and took care of the kids and they would come and visit me for periods of time. And and you know, he probably didn't expect I was going to survive. I can't imagine how that felt for him. Um, but just how my life flipped upside down, right? And then here I am and thank goodness for my girlfriends and people in my life. But, um, I'm trying to figure out where to go that I have to hop on a plane or drive and go and meet with people and there is no point person. You know, I I say, I just got part of my brain cut out and I have to make decisions to save my life. I'm not a doctor. I'm not even a sciencey person. I'm kind of more of an artsy person. And I have to make these decisions. I have to try to interpret all this stuff that they're telling me and decide what to do. And it's a lot. I mean, it's it's overwhelming. So and and you know this about me, but I really like went with intuition along the way for everything because I it was like, this isn't something you can slice and dice scientifically and say this is the way. Because if you could, like it wouldn't still be a thing. People wouldn't still be dying. They still wouldn't be doing the same standard of care. So I felt like there had to be a different way of processing. And so and that's how I work, right? So I was like, I'm going to use intuition to guide me through this process. So that's what I did. I during that lead up time to when they were creating that horrible radiation mask that you have to wear when they administer radiation and getting everything ready and everything scheduled, I bounced around the country and and saw the top docs.
Dr Rupy: I'm really glad you talked about this because I think it gets lost in translation, particularly when you're retelling the story that's, you know, years and years ago, it's easy to I think brush over the that day-to-day element of you've just had brain surgery, you have residual inflammation that is going to be affecting the different areas of your motor cortex, your visual cortex, you're trying to navigate just the activities of daily living, let alone trying to decipher what you should be doing in terms of, uh, your treatment pathway because to to using your words, you don't have a point person, you don't have a coordinator, uh, to use an NFL term, a quarterback who's going to be like, you know, coordinating who's going where and what play you're going to be. You don't have any of that. You're just on your own. Um, you know, lucky in the in the UK, we have general practitioners, um, but even like I'm trained as a general practitioner, but even us, you know, we're looking after thousands of patients within a distinct population, we can't be there at the end of the phone for every single individual. Um, I think it's miraculous that we still are able to, particularly for for patients like yourself who have rare, uh, conditions, but you're navigating all this yourself. So that, you know, and and trying to figure out, um, what the best path is for you and your unique circumstances. So I'm I'm really glad we we sort of emphasized that element because I don't want to brush over that. It's super important.
Rebecca: It is. And I think in trying to be optimistic and hopeful, I I brush over it in my own mind sometimes, but it is really useful. It's really useful for me when I have compassion. I talk to patients all over the world all the time. Um, and and it used to be almost, I don't know if this is too big of a word to say, but like PTSD. Like I I couldn't really think about my mum or I really it was hard for me to talk to people because it just I had such a physical response. And now I have enough distance and now if anything, I feel almost it's my job. I have to, I have to help people do this. Um, have to help people find a different way because, yeah, we are lost. We're meant to do all of this on our own. And maybe you have a partner, maybe you have siblings close by or parents or or whoever. I really didn't because, you know, I I always say the mum must be the glue of the family because after our mum passed away, even though my parents were high school sweethearts or maybe because my dad really quickly got remarried, had a new family, did his own thing. My three siblings moved to where their partner's families were so they would have grandparents in the picture, understandably. So my family is all over the place. And, um, yeah, so they came in and, you know, for a day here or a couple days here, my sister came twice for several days and took care of me. She's amazing. But, um, but mostly I'm trying to navigate these huge, literally like life or death decisions on my own. Yeah. Um, yeah, so I'm glad you you had me really think about that again.
Dr Rupy: And within this, you know, these hard decisions that you have to make, you make the decision personal to you to not, uh, undertake standard of care. Um, and you know, you've done your research around this and and I I'm sure you want to make clear to to folks that this is your unique circumstances and it doesn't apply to everyone, but you had your reasons as you were talking about earlier about the type of, uh, tumour, uh, that you you had and and how it was sequenced. Um, how was that? Was that something that you had to hide from your your doctors or or were you were you quite open about it?
Rebecca: Just to be clear, I did do the initial six weeks standard of care, the concurrent radiation and chemo, um, called Temodar. I did. I did that. And they they were very emphatic that you do the standard of care, no matter what, no matter what your methylation status is, um, or you will not be eligible for any clinical trials. So, um, so I I did that for six weeks. And then by that point, I had started looking at different things. And when I started leaning into the immunotherapy idea, I was really starting to have trouble with the thought of doing a year of high dose chemotherapy. And that's the second portion of standard of care. And that's the part that, um, I didn't start talking about until maybe a year ago that I I didn't take it. I hid it in my room. Okay. Um, I I just I was scared of what my medical team would do if they knew I didn't take it. And, um, and I knew they wouldn't advise me not to take it because they have to, you know, they have to be consistent with what they say to do. But I just I had this like strongest gut feeling. I mean, and some people are like, well, nobody wants to take the chemo. Like it's terrifying. And I get that, but it was different than that. It was like, if if there was a movie about it, it would like, you know, something would fling it out of my hand. It was such a strong feeling that I was like, I can't do it. I just cannot do it. And I just, I think too, I knew the way the story was meant to go or was likely to go. So I just I had to do something different. Whichever way it went, that was the only way I could kind of live with myself. And I think too, so often, this might sound weird, so take it or leave it, but you see other people telling the story about someone with cancer, especially brain cancer and and depending where it is in your brain that maybe be, but I wanted to tell my own story for as long as I could and I wanted to to derive, be the director of my own story for as long as I could. That was so important to me. No matter what happened, I wanted it to be me until the end. So I I was really important for me to feel like I was making some choices and that made sense to me.
Dr Rupy: I think sometimes, particularly as as medics, we get, um, whipped up into, uh, group think with regards to, um, guidelines and uniformity. And I I appreciate there is one as a medical doctor myself, there is 100% a reason why we use evidence-based medicine and, uh, there is obviously clear reasoning as to why we should be following guidelines. But within the realm of what you're what you were going through, because the stakes are so high and the, um, the the treatment that's being offered is so poor, that there should be sort of an allowance for experimentation within, you know, safe, uh, guard rails. And I think there is a bit of cognitive dissonance when it comes to thinking outside of these guidelines within the medical, um, establishment, uh, for fear of retribution, which is genuine, you know, there's there's a lot of litigation. Um, but but also, um, you know, what you were talking about in terms of using high dose chemotherapy in the knowledge that there is potential for harm, in the knowledge that survival, median survival, so the average survival is so low, um, we still push on with certain medications because there it's unacceptable to to do nothing or to offer something else. Do you know what I mean? Yes. Um, and I and I think we need to sort of challenge that. And you know, it takes brave people like yourself who are open now about your own experience to, um, to start that conversation, um, and and to explore other avenues because otherwise we just sort of tow the line and and you know, I like I said, I'm not trying to suggest that everyone should just create their own sort of process, their own pathway or whatever, but I I think within the realm of of what we're talking about today, like a a cancer that's aggressive, has a very, very, uh, short median survival, um, we need to explore other avenues.
Rebecca: I think that's so well said. Um, I had a lot of, I had fear for myself initially about talking about it, like I said, but I also was very fearful about talking about it even on social media and things for two reasons. One being, I don't want anyone to think I'm an expert telling them what to do or not to do. Two, if you already took the chemo and you're battling this, I know that can be very triggering. You want to, you don't want to hear somebody say, I did this wrong or or I gave this to my child or my partner. And I I want to emphasize, like I'm a rule follower. Like I I grew up very much like doctors are on a pedestal. What they say is God's word, right? Like it is the truth, what you do. And it wasn't until this happened in my life that I felt very differently. And of course, that's so much I think of my mum being with me in some sense or her story being carried with me because when you really think about it, they're saying this might, this is not going to help you, but you should still take it and you know how toxic it is. It makes a lot of sense, but old me never would have would have ignored that advice. But this this new version of me was the brave version, I guess. And that's why I want to put it out there, not to trigger people, not to tell people what to do and not to do because absolutely not, but just just to get the conversation going for people to feel like again, that they have some say in their own story and their own way of fighting this because yeah, that's the only way we're going to move the needle is if people start doing something different.
Dr Rupy: Yeah, yeah, yeah, absolutely. And and on that note of doing something different, um, let's go back to Germany. So, so you you're told by someone at it was it someone at Duke who who mentioned Dr. Saskia? Tell us about that moment.
Rebecca: Yeah. So my doctor at Duke, I, um, only ended up seeing him a few times, but my favourite thing, and I have to say this because I think it's really important. He's from Australia, so he has this accent too. I guess you probably think I have an accent and I think you have an accent. He's like, you know this thing might never come back, right? And I was like, what? I mean, no one had ever said that to me, ever. And and just I don't think you can underestimate and I hope he sees this or hears that, that sliver of hope from a doctor. Like I had my own slivers of hope and they might have felt woo woo or whatever else you think, but a doctor, like a neuro oncologist that said that to me, just was a little shift, a little nudge. And he's the same doctor who told me about Dr. Saskia. So I am so, um, so grateful for that. I'm so grateful that I got to to connect with Dr. Saskia Biskup in Germany. And you've met her. Like I when I met her, I mean, she's my hero, right? She is something else. She is a gift to this world. And I just like just like I felt with the chemo, I had this like intuitive sense and again, might sound really woo woo, but you know what? I'm going with it. I'm still here seven years later. She's it. This is it. This is what we're going to do. I mean, she is amazing. She her whole life is this, right? She I'll be like, are you going to go skiing? Are you going to take vacation? I don't take vacation. You know, my husband has to threaten to leave me if I don't take a day off because this is all I want to do. This is who she is as a person. This is her whole life is trying to save people from cancer. She's amazing. So when I met her and she explains things and when she explains it and draws it out on a piece of paper, I understand exactly what this peptide vaccine is that is going into my body and it makes so much sense. And I leave the room and somebody else asked me to, please don't ask me to tell you how it works, please. Please don't. You can tell me again. Like I get it, but there's no way I could explain it. But it was like, oh my god, I'm training my own body to make T cells against tumour mutations. This is insane. This is amazing. This is the future. So I, um, I'm getting excited. But she I I knew it was her. I knew this was going to work. And it was going to take like six months to make this vaccine. It ended up was like 11 months after diagnosis, almost a year after diagnosis that I got my first dose, which is really scary, right? Because after that six weeks of standard of care, which then is not, so let's say three months. So there was like seven months that I didn't do anything. Um, so during that time, and I don't know if you want me to talk about this now, that's when I really leaned into food and I decided to do a ketogenic diet for that period. I just felt like I had to do something like more than just eat more fruits and vegetables. I felt like I had to do something drastic. I had to feel like I was doing something. So I did that. And then, um, she also offered up the opportunity if my my doctors here in the US would support it to get, um, it's called an uptake inhibitor infusion. So like Keytruda. Um, so I did do those infusions for about a month before I got my vaccine, you know, and I would do those every three weeks and then I did it for the first year and a half that I was getting the vaccine in Germany. And just and this is all about boosting your immune system, like turning it on like hyper speed, right? To the fact that I have a little bit of autoimmune after, totally worth it. I call it a normal person problem with my thyroid. But, um, and and that that's at that point when they're like, okay, this can start to hurt your organs, we have to stop with the Keytruda, but I mean, I just knew this is like immune, you know, I'm not a doctor, I'm not like you, but I knew immune system, you know, anti-inflammatory, turmeric, fruits and vegetables, anything that was immune boosting and then, like I said, for a while, I did the ketogenic diet, but that's what I was doing while I was waiting for her to, you know, cook up this miraculous vaccine to to give to me.
Dr Rupy: Gosh, okay, I have so many questions. So you go to Germany, you meet Dr. Saskia, the world, I hope to have on the podcast soon, um, to explain a bit more about how she even got to the peptide vaccine, um, technology in the first place, but you meet her. Did you have to in the same way, um, you were having to demonstrate to the different, uh, centres in the states that you were an eligible, um, participant for a study that she was, uh, doing or were you outside of the realm of a clinical trial and they were still doing sort of quite early stage experimentation?
Rebecca: Right. So by the time I had met with her, she had been doing it for five years. So it wasn't super early stage, but early. Um, and and you there was no, um, restrictions in terms of, uh, what I was doing in the US that would affect my ability to be eligible for what she was doing in Germany. But because they because she's Saskia, like she will determine from your tumour mutations because you have to do like genetic sequencing on the tumour to get a profile and understand which mutations you have, if you're likely to respond. And if you're not, she's not going to waste your time or your money, you know, she's going to say this isn't likely to work for you. You, you know, and hopefully if she had any other suggestions, try a trial for this or this. But, um, but that was the only requirement was that I was going to meet some threshold of there being a possibility for me to be a responder. If I'm going to fly there, put everything in that basket, you know, all the things, you know, she wanted there to be some likelihood that it would work.
Dr Rupy: Okay. Um, and actually, I'm so this is the paper I'm just holding up for folks watching on YouTube. Um, which for which you're one of the patients, am I am I correct? You're one of the 173 patients that was in this paper looking at, uh, it's titled a real world observation of patients with glioblastoma treated with a personalized peptide vaccine. And the idea around this vaccine is to essentially, uh, get an idea of what mutations there are in your specific tumour, generate peptides from that tumour that can prime your own immune system to recognize the specific, uh, uh, peptides in that tumour and mount an immune response from your own, uh, uh, CD, CD8 and CD4 cells, so your own immune cells. So essentially, it's a vaccine, you you get given, it tells your immune system, hey, there's a few proteins here you've got to look out for, and, uh, when you see these proteins, you attack. Uh, and, uh, I'm I'm massively simplifying it, simplifying it here for the listener, but it's actually useful for me to think about things like in this way as well, quite honestly. Yeah. Um, and they do all sorts of tests as well to determine whether you are a true responder as well. I believe in these 170 odd patients, 90% of of folks actually responded, so they actually mounted an immune response. Um, but that's generally how it it works. So now we know what the peptide vaccine is. What what what was the first experience when you were you were told, all right, come back to Germany, going to give you this jab and and, uh, what what did they tell you about the the frequency and and how often you were going to be having these?
Rebecca: Yeah, so the first time that you go, they do like a booster phase where they do, um, four days of four days of appointments and and injections over 10 days. Um, and they they draw your blood before before you start and then they drew it again at the end of that 10-day period. And then I would go monthly because they can only make a certain amount, um, with the tumour material they have. I think they were able to make 14 for me. Um, so, so I did that and then I would go again the next month and then, you know, at three months, they they then start doing what they call immune monitoring where they do it, my understanding is in like a petri dish and see if you're starting to create the, um, the T cells to to respond to the mutations. And then they give you a report on that. And and my response was good and it continued to be good to the point where they're like, you know, let's push to three months because A, save the money and the time of travel, but B, you know, to not use them up too quickly. It's just that kind of walk that fine line between keeping your, um, your your immune system ready to attack these invaders and these mutation cells and also, you know, making those doses last. So did that over the period of about 15 months and then the pandemic hit. And being in the US, I mean, the international borders were closed. I, um, even if I could have gotten a medical exception to go, I was terrified if what if they don't let me back in? What happens if I get sick over there? I have four kids here. So for a year and a half, I didn't go. I just continued doing what I was doing here. And and that's the point that I stopped doing the keto diet too because I just didn't feel so good on it and I'm like, I'm not really doing anything. So I went more Mediterranean, tons of plants, fruits and vegetables, anti-inflammatory foods and just kind of hoped I was like boosting my immune system and keeping it going. So then finally I was able to go back as soon as the borders opened, I was like on that first flight back to get a dose and they drew my blood and I was still having a good response. And that was, oh, I can't, I mean, that was such a gift. It was amazing. And so I was like, okay, whatever I'm doing, whatever she did, something's working. And at that point, we decided to spread them out and do six months and then we did nine months and now I go annually to keep them going as long as I can.
Dr Rupy: That's incredible. Uh, I I completely forgot about the, uh, the the the COVID, uh, uh, spanner in the works there, um, from your story because gosh, that would have been awful. You know, you have the the medication that is working, the vaccine on one side of the world, but then to go get it, you risk not being able to come back and see your family. Right. Uh, and getting stuck out there and, you know, potentially getting sick or, I mean, gosh, what a whirlwind of emotions.
Rebecca: I know. It's been kind of a roller coaster looking back. Yeah.
Dr Rupy: That's incredible. Well, honestly, it's, uh, it gives me goosebumps and I wasn't there to see the dead cardinal, but I know from just having chats with with Tara, um, both on and off the pod, like we we chat all the time. Um, it there's something there and it's and it's quite, uh, awkward to sort of vocalize it publicly as a medical doctor because obviously we just don't have the science or whatever, you know, but there's something within the quantum world, the energy coming together or something, the traditional sort of woo woo explanations, there's something there. And I, you know, it's unexplainable, but I, you know, like you, I lean into it and if the universe gives me signs, then, uh, I I perk up, you know, I I I don't ignore it. Um, and I I think that, you know, even if, even if in the bare minimum, it gives you a sense that you are being listened to by a higher power, whatever it might be, and it encourages a positive mindset, we know that that has a genuine impact on our biology in all different areas of of medicine that's been proven. So, you know, hang on to that belief and I I really feel that because cancer, and I'm saying this as empathetically as I can because I'm fortunate to have not suffered it personally, but because it robs you of so much of your control, your identity, your the locus of things that you can do, like if you can at least maintain that sense of, uh, mindset and, um, reframing and the story you tell yourself, it can serve you in so many different ways. And I think you have really embodied that. So, um, gosh, I I really appreciate you you telling us your story, Rebecca, and and and, uh, I just, yeah, I'm super excited to to share this with as many people because I think that I want to, like I said earlier, I just want to amplify your voice and and and your your energy as well.
Rebecca: Thank you so much. Thank you for the opportunity. I I really appreciate it. It's been so fun getting to know you a little bit.
