What's Up Doc: Top NYC Brain Surgeon's Advice on How to Get Quick and Accurate Medical Advice without Going Down the Rabbit Hole

Today's expert will no doubt make your life feel so much better. If you're like me, you can go down the proverbial rabbit hole on the internet searching for medical answers, big and small, and often that causes more anxiety. 

Dr. Rohan Ramakrishna is an award-winning, board-certified neurosurgeon . He is the Chief of Neurological Surgery at New York-Presbyterian and  Brooklyn Methodist, and he is a Professor of Neurological Surgery at Weill Cornell and the Director of the Brain Metastases Program. He is also the Co-director of the Rhodes Center for Glioblastoma. 

We talk about life as a brain surgeon, some of the nuance of Glioblastoma, the importance of clinical trials and how they are defined - and why it's so important  to look beyond the standard of care. And lastly, Dr. Ramakrishna shares his passion project: a new tool for making health care accessible in a vetted, helpful way online, between appointments. For not only GBM but ALS, dementia, fertility and more Roon is going to change our lives for the better.
www.Roon.com

I want to thank YOU for taking time of your day to listen. I don’t know if you’re here because you’ve gotten a tough diagnosis or someone you love has - or if you just want to learn more about how to feel empowered to change your story and find purpose in your life. But I’m glad you’re here. If I can beat a universally deadly cancer and live a better, happier life, truly grateful for my cancer wake up call, I know the tools I’ve learned will help you too. Your life is about to get so much better.
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Love you, Rebecca

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Transcript

  Hey, it's Rebecca. Welcome to the Brainy Blonde podcast.  I'm so happy you're here with me today.  You guys, I have a confession. I have this bad habit of doing something I know I shouldn't do. And I bet you do it too.  We call it going down the rabbit hole. I mean, just last Friday, my son called me while I was at work.

Hey mom, what does this thing? No, no, no, no. It's more like. Bruh, what's this thing on my leg? And then I get a bunch of pictures texted to my phone. I'm busy. I'm at work. It's been a long day and I'm like, I don't know, honey. It's probably a bug bite. You're fine. Moving on. Totally forget about it. Then, of course, it bites me in the butt.

Because after nine, in my PJs, tucked into bed, ready to do my wordle and knock on the door. Mom! Can you look at this thing on my leg?  Yeah, the spot on his leg looks way worse now. I mean, it's huge and  There's another one on his stomach.  So what do I do?  Yeah, Dr. Mom consults Dr. Google. Next thing you know, it's 30 minutes later and I'm looking at super gross pictures of bites and rashes on random people on the internet. 

Now I've diagnosed him with either a flesh eating bacteria or possibly Lyme.  Yeah, we better go to the doctor in the morning. And of course, when we are there, we are informed by the real life doctor that it's just poison oak.  Now, imagine if it's not a silly and kind of gross rash that has you down the rabbit hole, but something way scarier.

Because I've been there too, way too many nights to remember  and it's always worse at night somehow.  And that's why I'm so excited to introduce you to our guest today, because if you do that too,  this is an episode you're not going to want to miss.  My guest definitely understands why we want instant answers and also why the internet isn't the best place to get the right answers.

Or to make us feel better. In fact, I almost always feel way more anxious after a deep dive with Dr. Google,  Dr. Rowan Ramakrishna is helping to change the way we use the internet for medical advice.  And it's really exciting.  Dr. Rohan Ramakrishna is an award winning, board certified neurosurgeon. He is the Chief of Neurological Surgery at New York Presbyterian and Brooklyn Methodist.

He is a Professor of Neurological Surgery at Weill Cornell and the Director of the Brain Metastases Program. He is also the Co Director of the Rhodes Center for Glioblastoma.  Dr. Rohan Ramakrishna, I am so excited you're here today and I can't wait for this conversation.  Well Rebecca, thank you for having me I'm really inspired by all the amazing work you've been doing as on social media and, and your very powerful story, which I know it's really inspired many that have come across you.

So amazing work on that front.  Thank you for saying that. And I certainly wouldn't be here at all, much less hosting a podcast if it weren't for the fact that there are people who choose to go into brain surgery for their career. I just can barely wrap my mind around it. Tell me, how did you decide to be a brain surgeon? 

You know, it really all started in medical school, as you can imagine, and I'm one of those people that's very fidgety, I love building things as a kid, I love using my hands, and in medical school, at some point, you have to decide, are you going to go down more a surgical path, or, you know, a medical path, you know, like your internist, for example.

As I did and rotated through all these different specialties I just became very obvious to me that I was, A surgeon and not someone on the internal medicine side of things. And I'm really appreciative that there are people that gravitate towards that side of, of medicine. But for me it was definitely surgery.

And then as I thought about the different surgical specialties, right, there's general surgery. ENT, neurosurgery, I mean, I really fell in love with, with, with neurosurgery and in particular brain surgery because, you know, there's nothing quite as awe inspiring even today. Having done thousands of these operations at this point.

Then opening up someone's head and staring at the brain. It's an awe inspiring experience. If you think of the known universe it is the most organized, complicated  structure in the known universe. Right? There's nothing more complex than that, than, than we know of. So the fact that, you know, as a neurosurgeon, I have the opportunity to,  Study the brain, you know, try and understand it better and operate on it in a way that can hopefully make people better Really, you know, nothing else came close, you know after after kind of experiencing  Those consequences to being a neurosurgeon.

So for all those reasons, I really loved it and then  I chose neurosurgical oncology because,  you know, I,  I think when you, when you choose a specialty in medicine, you have to both love and hate the disease, right? Hate it enough that you can make it better for those patients that you, that you take care of, but love it in the sense that you are so interested in it that you can, you know, You know, move the field forward and you know, hopefully leave a lasting impact on medicine on the lives of your patients and more.

And so,  you know, cancer for me is something that I find deeply interesting and something I deeply want to make a difference in and something I want to really help my patients in that time of their lives in that rough spot. And so neurosurgical oncology just blended all those different things, right?

Amazing science, the ability to understand the brain and the impact the tumors have on the brain ability to maybe and hopefully come up with And be part of new treatments. So for all those reasons, long winded answer, but for all those reasons, I really gravitated towards neurosurgery.  Well, that's, I mean, I just, I'm so grateful for you.

It's, I don't know if we still talk in terms of like left brain, right brain. And that's probably all nonsense when you actually understand the brain, the way you do. But  I, I operate so differently. And In life in the way that I think and it's funny because I was just like reading this novel And I was finishing it last week because it's like a thousand pages and It's called the covenant of water and I just loved it And for some reason like this the way There's this part in it where they're talking about brain surgery and I had to just close the novel And sit there and just think about the surgeon who took the tumor out of my brain and you, I mean, I just, it's just unfathomable to me that you can do that.

And so I'm so grateful for what you do and yeah, awe inspiring is right because I don't know how you can do it, but it's, thank goodness that you can. One of the really super interesting things about neurosurgery is it's, it's a really  new field in the grand scheme of medicine.  Right, you know and people forget this, but 50, 70 years ago, the mortality rate from neurosurgical operations was really high.

Like you had a 1 in 3, 1 in 2 chance of dying from a neurosurgery operation. Now, the mortality rate is well, well, well under 1%. It's come a very long way. It's, extraordinarily sophisticated and it's become extraordinarily safe. And I think I owe it, we all owe it in 2024 to these amazing innovators that came before us 50, a hundred years ago that really had the temerity to, you know,  try neurosurgery, right?

There was no general anesthesia, the bravery of those patients to kind of succumb to, you know, submit to that as this. something to behold. So I'm very thankful we're in 2024 and not 1920, but it's an incredible, incredibly short progression when you think of it in terms of medical history.  I would love to hear you know, I think  An average person or maybe it's just because i'm a visual person, you know, they say oh I had an olive sized tumor or I had an orange sized tumor and then you kind of picture And maybe some are I don't know but a firm for an object in a brain that you're removing like But it's at least with glioblastoma.

My understanding is it's nothing like that at all. I mean, can you talk a little bit about  brain surgery in general and then how a glioblastoma presents  Sure. So,  you know, I think in terms of the size and sort of consistency of a tumor glioblastomas tend to be a few centimeters, you know, when you first present with them they can be large, you know, five, six, seven centimeters, but oftentimes that median size is three, four centimeters you know, which roughly is  the size of a couple of grapes, you know and in terms of the consistency, it's kind of like You know, the brain normally is a bit like Jell O, that's the normal consistency.

And brain tumors can be harder than that, and kind of  easily separable from the brain. I mean, it can be soft and mushy brain tumors where they kind of infiltrate into the brain. And glioblastomas tend to be the latter, more of a soft and mushy kind of  growth in the brain. And, you know, the reason that they're so hard to treat.

is that they can grow into the brain. They infiltrate into the brain. So even if I take everything out that I can see on an MRI scan, there's still always going to be a few cells left behind.  That's why no surgeon should ever say that they're curing you when you're in the office with their surgery, right?

That just doesn't happen biologically.  What we, surgery is an important part of the equation and it's part of the standard of care. Maximal safe resection as we say, but it's not a cure. And so, you should be wary of anyone that  says they can cure you, you know, with surgery. Because it's likely a, a sales effort rather than anything true.

When you do a brain surgery and you're looking at the tumor and the consistency of the tumor, can you, I mean, just.  For, I mean, I, I think for people who've been through this, like I have, that's one thing, but for just an average listener who might be listening, I mean, when, when can you tell what type of a tumor it is?

If it's a glioblastoma and differentiate that, is it during the surgery to remove the tumor or is it is it later with labs?  Yeah, great question. So I think you get a very good sense of what you're dealing with from the pre operative MRI scan  and From the MRI you're usually 99 percent of the time gonna be right that it is a glioma or a high grade glioma  Sometimes the tumors look like gliomas, but you can't be for sure can't be certain that it's a high grade tumor versus a lower grade tumor But  for the most part we can be really confident that when we look at an MRI scan We're seeing a glioblastoma now some surgeons  Treat this information differently.

They don't, they'll just say to you as a patient that, you know, looks like you have a brain tumor, not sure what it is. And we won't be able to confirm it until after the surgery, after the biopsy results come back  and other surgeons. And I'm 1 of them. You know, I, like, if I'm pretty confident that it is. A glial blastoma, I,  I'll, I'll. 

I'll acknowledge that, you know, that I'm worried that this type of. Cancer. Because I think that if you're faced with this as a patient, this is my treatment philosophy, I would say, but if you're faced with that as a patient, awfully important to get as much information as you can as early as you can, right?

Because, you know, what usually happens in these situations, you're hit with this really awful information, like a ton of bricks. And you have to process it. Right. And I think the earlier you can get through that process and started through that process, the better. Right. You can plan your life. Yeah. You know, all kinds of things.

Right. And so if we're not very forthcoming with what we think it is, and what that treatment program looks like surgery, not just surgery, but, you know, potentially chemotherapy, radiation, etc.  I think you know, you're, you may not be as at quite the advantage as you would be as if you do that. Right. 

Information a few weeks before, you know, so I like, you know, my personal philosophy. I'm not saying it's right but my personal philosophy is to kind of Acknowledge that this is likely a type of brain cancer and that you're going to need  Several forms of treatment in addition to surgery. So that's how I treat it as as a neurosurgeon  Yes, I appreciate that a lot.

I know for me if it's someone who hears of me through social media or a friend of a friend You know, for me, it feels like this is way more common than it probably is, statistically, just because every GBM  kind of lands in my lap in terms of somebody knowing somebody, but I know you know, because my mom had a glioblastoma 20 years ago that I, I was,  It's kind of hard to say it that way, but because when I got diagnosed, I knew what it was.

I was at a bit of an advantage. I knew that I had to hit the ground running and I had to form my team and I had to figure out where I was going to get treated and seek out clinical trials. And a lot of people don't know that. And it's often a fast growing, you know, tumor and a cancer. So I think that's, I, I really appreciate that you do that personally and and I think I would love to hear what, what your thoughts are on standard of care versus clinical trials and, and anything that you want to share about that because it's kind of evolving so quickly, I believe. 

Yeah.  Well, look, I think  what is standard of care for standard of care is the common, the scientifically accepted treatment for what we should offer patients with any disease, right? Based on rigorous.  hopefully rigorous science including clinical trial evidence. And the standard of care for glioblastoma for newly diagnosed patients is maximal  safe surgery followed by temozolomide and radiation.

And then, you know, several cycles of temozolomide. You know, the evidence really is that this standard of care works best in patients who have what we call methylated tumors. For patients with unmethylated tumors you know, the  addition of temozolomide doesn't seem to make a big difference. And so, that being said, everyone tends to get, whether you're a methylator or not, tends to get Temodar because we feel bad not giving Someone with cancer, no chemotherapy, right?

But that's not a great reason.  And I think that Unfortunately, the standard of care is not good enough For our patients of glioblastoma. I think as you as you well know the median survival for a glioblastoma Is still 14 to 16 months, right? And some of that varies based on the type of mutations that you have  In your tumor another reason why it's really important to  get a genomic analysis on your tumor wherever you live in the world so that You can number one get prognostic information which tells you what to expect potentially, but also, you know, what targeted agents, either targeted therapies, immunotherapies, et cetera, might be available for you based on your tumor genetics.

But  this to me suggests that our standard of care is just not good enough, right? Given the survival data  and we need desperately need new therapies.  And so, particularly in the unmethylated GBM population, which is a most, honestly, of, of patients, I think there's an incredible opportunity to study new trait, new trials or new agents responsibly,  and  clinical trials are the vehicle to do that.

And so I'm a big believer in clinical trials. It's one of the areas I focus my research on is new therapies using clinical trials. And they're incredibly important towards moving the field forward. And so I would encourage anyone you know, to investigate clinical trials for your tumor, whether you're newly diagnosed, whether the tumor has come back. 

You know, it's a really important aspect towards care. So I couldn't recommend them highly enough.  And are you finding there are more clinical trials available for people upon initial diagnosis before having a recurrence?  You know, I, most of the clinical trials today focus on patients who have a recurrence. 

That being said, there are more and more trials focused on patients who are newly diagnosed.  I think the burden of proof in I think the reason that is, is because the burden of proof in some ways is higher in newly diagnosed patients than it is in recurrence  because there's really no standard of care in the recurrence setting.

And so people like to start in the recurrent setting, you know, and then move, move more upstream, you know, into newly diagnosed patients. That's typically the sort of,  but in the last several years, we've seen. You know, clinical trials that are just for and start in newly diagnosed patients. And I think honestly we should be doing a lot more of those clinical trials in newly diagnosed patients because by the time you get To recurrence you've already seen chemotherapy.

You've already seen radiation your immune system may be a bit weakened from all the treatments And so if you're trying things that require the immune system to be firing on all cylinders, etc  You may not get the results you want. And so I do think that the newly diagnosed population is something, some is a population where we should be devoting a lot more clinical trial effort.

And, you know, I'm, I've been heartened to see a lot more.  effort in that regard. So but yeah, clinical trials are super, super important regardless of your stage of disease.  Absolutely. And I agree with you. I mean, the sooner the better, obviously, because it's such an aggressive cancer and depending where it is, you know, it can be life changing really quickly.

And, and do you have any thoughts on, and if you don't want to answer this, it's fine, but on Timidar and if there are cases in which that would make make it worse. I don't think TMADR would make a situation worse. I think, you know, the, the study that looked at TMADR in glioblastoma patients was a very well run study published in the New England Journal of Medicine, what we call the Stoop Protocol named after Roger Stoop. 

And,  you know, I don't think that,  you know, what it showed clearly was that there was a benefit to using themadar in, in methylated patients with glioblastoma. Now, of course, like any chemotherapy, there are side effects to chemotherapy, right? Those have to be considered. But compared to many other chemotherapies that are given in other cancers, the side effects of temozolomide tend not to be as severe.

All that is to say that I think and believe in TMADR as a treatment, but on the other hand, it's, it's still not good enough, but until we have better ones, I would, you know, in eligible patients, I would always counsel them to talk to their neuro oncologist and strongly consider it, particularly if they're have methylated tumors.

Regardless of methylation status, most people are getting TMADR.  So, okay, circling back to, to clinical trials, so  sometimes there's, there's fear around clinical trials, there's a lot of different things, ideas that people have sometimes that maybe they would get a placebo I think that's kind of one big one, would, would they actually even be getting the medicine, I mean, what are some of the misconceptions you see about clinical trials? 

Yeah, I think, well, the first thing is, is why participate in them, right? They're really important for a variety of reasons. You know, the first is that unquestionably you're helping humanity by participating because the information that we learn from a clinical trial is going to really help us in understanding whether the therapy worked and what we can hopefully prescribe  not just to you, but to other patients that come after you, right, in our effort to bring new therapies online for patients with glioblastoma.

The second thing is, it is the only way, honestly, to access these new therapies, right? And  while a new is exciting, new does not mean effective, right? So on the one hand, you could get something that actually worked for you, which is great, and that's what we want. But on the other hand, it may not work, right?

And so if you didn't have a clinical trial,  it would be the wild west of medicine where everyone's just trying, is testing a new therapy and, you know, it's, being published in the journal of strong opinions, you know, rather than through rigorous scientific research.  And so that's why clinical trials are really important because it allows you to access these new therapies, but also allows us to study in a way where we can tell a, if it's safe and be whether it actually worked.

And so that's why it's really important. I think clinical trials, both for you as a patient, but for humanity brought in terms of misconceptions. I think the biggest one is. This idea of being experimented upon, you know, being a guinea pig, quote, unquote sort of biomedical research system.  And I think we have to acknowledge there's a lot of history in this country of people being experimented on in unethical ways.

And so you know, we should acknowledge that there's a reason people distrust healthcare doctors and research sometimes, and we have to earn that trust, right? But I think.  The misconception that,  you know, you're being experimented upon, thankfully is not true, right? Yes, you are participating in a research experiment, but this is a highly controlled and rigorous research study that you'd be participating in as a clinical trial where we study  the drug very, very carefully on a number of dimensions.

So remember first that before a drug or new therapy comes into a clinical trial, it's been studied in, extensively in animals. You know because we think it's most ethical to study it in that way.  Type of environment and understand the side effects and whether it worked in animals before we even bring it to humans.

So we have some idea of, of how it works and its biology from, from those experiments. And then we start in what's called phase one clinical trials. And the purpose of phase one trials is to understand the safety and the dose required for a particular medicine.  And so we want to make sure that before  we even know if it's effective, we have to know whether it's safe first.

Right. Right. What kind of side effects it causes, what's the maximum dose you can have before you have side effects that are, that are really toxic. So that's phase one. And we really don't move to phase two, which is the next until we're satisfied that phase one has shown that the drug is safe. 

Phase two, we're continuing to study safety, but we're also looking at whether it's effective. Right. Right. The, the.  device or, or medical treatment.  Right. And if we have a good signal there, then we move into a phase three study, which is usually a randomized placebo control study, where we study the drug in one group.

And then in the other group, they're getting the current standard of care, right? So it's important to know in cancer therapy, the control group or placebo group is not getting no therapy. You're just getting different therapy, otherwise used in the absence of clinical trials.  So I think one of the other.

fears that people have is if it's a phase three study, what if I get the control arm, you know, should I participate? And I get it, you know, as a patient, it's, it's tough to swallow sometimes that you might be, you're excited about a clinical trial and you might get put into the control arm. And so my response there is it's still worthwhile to participate in those studies because  Absent the clinical trial,  you have zero chance of getting that study drug, right?

If you enroll in the clinical trial, if it's a phase three randomized study and it's a, you know, roughly equal one to one randomization,  let's say, you at least have a 50 percent chance of getting the drug in the trial as opposed to zero if you didn't participate, right? So if access to this new therapy is something that really resonates with you, this is the highest percentage chance way of getting it. 

The second is that patients who participate in clinical trials are really monitored in a much more intensive way. You may think that even in standard of care, you're monitored intensively, which is totally true. You know, getting a neuro oncologist appointment every two months, an MRI every two months, and labs at every one of those visits is intensive monitoring.

There's no question. But in clinical trials, it's often even more intensive than that. And I think there's a benefit to patients.  Although I can't prove this, but I think there is a benefit to patients that participation in a trial, even if you're a control arm, you know, can serve a benefit to you, perhaps in indirect ways both in, if not length of, you know, if not, if, even if the drug doesn't work, at least maybe quality of life, managing symptoms, things like that,  clinical trials are the way to go.

And to me, the opportunity to do something above and beyond is.  Well, it just feels so empowering. I know that, and it feels that way to so many people I talk to. They just really want to seek out the best, the newest, the most promising treatment. So Dr. Ramakrishnan, what  clinical trials are you the most excited about? 

Yeah I'm really excited about some of the work being done in immunotherapy for, for brain tumors. You know, there's on the one hand things like oncolytic therapies and we participated in a clinical trial. Looking at that. There's also things like CAR T cells and then things like immunotherapy, like drug immunotherapy.

And so there have been interesting reports that have been published in the last several years. Across all these different therapies that have shown  signal right now, and none of them have shown a slam dunk new, you know, let's let's throw a party type of situation, but they've shown some interesting biology in terms of what we see in.

You know, the immune response, what we see in the brain, some partial responses, some even complete responses that I think it's an area where we should be excited to pursue and I know many people are and including us here at Weill Cornell. So, it's a it's a really fascinating area immunotherapy for brain tumors and really excited to see what the next several years will bring as far as that goes. 

It is super exciting and and like, you know, just because I spend a lot of my time in social media and trying to Continue to spread information and awareness you do see those big bright headlines, you know tumor shrunk completely in five days with CAR T cell therapy or And and i'm not saying that it's not true but but sometimes I think that those can they can give a lot of hope but they can also lead to people having a false belief about what's happening, you know, and what's available and why aren't they getting it.

And, and so there's a balance there. And I try to strike that in conversation with people. There is so much hope. I do feel like, yes, the standard of care for my mom is the same as the standard of care  today, but there are tons of clinical trials. I have seen,  and I know you do every day, but just, just an anecdotally in talking with people, people living a lot longer, trying some of these things. 

Yeah, you know, I would I totally agree with you. I think there's especially in the media I know everyone likes to pounce on the media, but you know, the reporting of many of these new trials, unfortunately is way too cheerleady and Part of the hype machine and not necessarily as balanced as it might be, you know A lot of these clinical trials have shown in some cases complete responses partial responses But they've also shown people who didn't respond, or people who temporarily responded, right?

And a temporary response in the grand scheme of things is exciting, I guess, but is that meaningful to the patient? Both from a quality and quantity of life perspective, if it's only temporary. So, I think that from a realistic, practical standpoint, sometimes these articles in the media like you said, may do a a disservice if they're not written in a very balanced way, right?

We want people to know about the new therapy so that they're excited so that, you know,  they support their health institutions so that they maybe enroll in that clinical trial, but on the other hand, you still have to have a balanced reporting and accounting for how the trial is actually performing and what the results actually showed. 

Absolutely. And and to be fair to the journalists, I mean, a lot of it's clickbait. And if we actually as consumers go all the way through and read it, it usually does get to that. But but those headlines sometimes can just be just as far as we get. Or maybe as far as we want to look because it sounds hopeful.

Do you have any Yeah. Thoughts on and maybe this is just very much in the world that I'm in participating in immunotherapy and some of this stuff that There's this whole idea of pseudo progression and not being able to tell when it's pseudo progression Versus actual recurrence or progression of the brain tumor do you have any thoughts on that or or any ideas or experience with that? 

Yeah pseudo progression is a is a vexing problem and for those that don't know pseudo progression is when You it looks like your brain tumor is regrowing, but it's not. It's really more of an inflammatory response in the brain. And so it can be very hard to diagnose absent getting tissue and take a biopsy of that area.

Now, of course, we don't like to submit patients to surgery unnecessarily if we think it's definitely pseudoprogression because you don't need to operate on pseudoprogression. It'll go away on its own. And we typically see it in patients. If it happens in, you know, methylated patients so  it's a really hard problem because we don't have a great set of imaging tools that can reliably tell us whether it's pseudo progression or progression, you know, we can use advanced MRI techniques that involve things like perfusion or even pet imaging, pet imaging looks at the metabolism of an area in the brain and You know, tumors tend to be hypermetabolic relative to the normal brain,  but none of these things are perfect, unfortunately.

And so you can do all those things and still be  confused as to what it is. So this is an area of active research in the radiology world to figure out how to better design MRI sequences, PET sequences, et cetera, that can give us better information on whether something is pseudo progression or not. In the PET world, there are some new amino acid tracers.

That maybe,  you know, coming down the pike that may allow us to differentiate pseudoprogression from actual tumor growth more reliably, but those are still in the research phase.  Now is that something where you like drink something and then go in for a scan and it kind of lights up in the brain when you're talking about those PET scans?

Okay. Yes. That's fascinating and really encouraging because I just know a couple of people who had unnecessary second surgeries and it's just, you know, everyone's doing the best they can, obviously, but it's just, this will be a breakthrough for sure. Well, I think we are talking about. Social media and headlines.

And  I was thinking about what you said without, you know, the rigorous standards it would be the wild, wild West. And I think without really a lot of hope, it's still the wild, wild West for people desperate to save their lives or the life of someone they love.  And understandably,  waiting around, waiting for recurrence, waiting for three months between MRIs doesn't feel really good.

And,  we want to be doing something. So, it's, I can't blame people. I mean, why, why wouldn't you try to figure out, especially when you know that there are outliers.  What did they do different? What could I be doing different?  Hence, the deep dive into, The internet.  So that leads me to, I would love for you to talk to me about RUNE. 

Yeah. Well, thank you for, for asking. So RUNE you can check it out at RUNE. com is a labor of love for me and my, my team at RUNE. And the reason we started it is  we, we were embarrassed by the internet when it came to healthcare, right? You mentioned Dr. Google, but people are really frustrated with the healthcare system, right?

And the reason is we have, as patients. We have infinite demands on our doctors and our healthcare system, but they have limited time and there's limited numbers of doctors, right? And so the average doctor can only spend, you know, 15, 10, 15 minutes with you in an office. So how much can you really get to and how much can they really get?

Can you get all the questions, concerns off your chest and get them answered in a way that you feel supported and comforted appropriately? And can the doctor Get everything off his or her chest that they want to and need to tell you, right? So often in that limited time frame, they can really only focus on your, you know, your major symptoms You're maybe one two or three and then what they can do about him about your symptoms And then what they can do for your cancer therapy and what they recommend to do next, right?

There's not really a lot of time to discuss her thoughts or their thoughts on supplements or diets or anything like that. If you have those kinds of questions, how do we expand medical time? How do we make it so that you're, you can have access to your doctor anytime, any place and ask them any question you want and get a good expert answer. 

And so that's why we started Rooms, so that we could provide information, community and support to anyone navigating a health illness anywhere in the world. By really having a doctor in your pocket. So, again, that you can get an expert answer anytime, anyplace and it's not just doctors, you know, you have patients on their caregivers on their social workers, mental health professionals,  nonprofits, really anyone that has expertise to lend.

In that health care journey is on route, right? Whether it's for glioblastoma, which was the first place we started whether it's for ALS, which is the second one dementia, and then our more recent one, which is fertility and reproductive health. So, if you come to Roon, you'll find expert physicians, patients, caregivers, all these other experts across the ecosystem of health that have come into one place to really provide you with that expertise.

And the way that they provide expertise is through short form video. So each of the videos, and we're proud to have you, Rebecca, on, on the app. You know, usually lasting three or four minutes.  And so you can really get consumable bite sized information to very, very specific questions. It's amazing. But people ask, I mean, people ask very sophisticated, sophisticated questions on the app, like what is the role of immunotherapy?

Or tell me about the Seagate trial. You know, what is a phase one study? You know, They ask all kinds of questions, and because our medical network of professionals is so vast, you know, we have answers to pretty much everything. And if you don't find what you're looking for, you can ask a question through the app, and one of our experts will answer it.

So it's a really powerful platform to really support you in between those questions. Clinic appointments with your doctor. You know, the original name for Roon was Care Space. The fact that most of your healthcare experience is not in the hospital. The space in between those care appointments, right?

And so you know, that, that's, that's really where our sweet spot is. It's like anytime you have a question, you can just pull up your phone or go on the computer and ask it. And we hopefully can, can provide value to you.  I love that so much. So, I mean, even. Even the regular people like me who are on there, I mean, they've kind of been a little bit vetted.

You know, that people aren't out there saying things that you wouldn't want them to say. It's just really, I mean, I loved being a part of it. I just, I just think, I wish that it was around six years ago or 20 years ago with my mom. I mean, it's just, it's really, it's really helpful. One of the reasons we started  was there's a tremendous amount of misinformation and disinformation on the internet.

You know, when you google something, when you go to read it, when you go to facebook, when you go to instagram, when you go to tick tock as a consumer, it's very hard to distinguish good, reliable medical information from bad information.  And it'd be one thing if there's bad information, but there's also, you know, active disinformation where people are trying to sell you something.

We felt sort of a moral obligation. To put this app together because people are really in desperation and understandably, people are desperate, right? When you're diagnosed with an illness like glioblastoma, but yeah, being,  you know, succumbing to a lot of these snake oil therapies that, you know, was depleting their bank accounts, but not actually providing any benefit and potentially even causing them harm, you toxicities. 

So we thought, let's put a centralized resource on the app on the web. Where you can get all these experts together in one place and really provide an amazing service where you can combat misinformation and disinformation and talk about all the things that show up in some of these online groups, right?

You shouldn't be drinking bleach or taking dogs to work for Glioblastoma, right? And I can answer that question, Rune, and we do answer those. It's on Rune, but we can do it from a place of empathy rather than from a patronizing standpoint, right? And to say, Hey, this is not actually a good idea for X, Y, and  here's, here's what else you should do.

So that's one of the big motivating factors for us is because none of the rest, the rest of the internet is not designed for help.  You know, Instagram, TikTok, et cetera, are designed to entertain. You know, we're, we're here to empower you. And so in your healthcare journey, and so that's really how every aspect of room has been designed. 

Yeah, no. And you can feel that compassion. I think that that is so key. It's just understanding that the desperation that you feel, if it's your parent or your child or yourself, and you're just trying to save your life. And why you would even consider something that you would never, never have probably considered had you not received that diagnosis.

And I think So important. I know for me, people are always asking me what to do. And the first thing I say is I'm not a doctor. I can tell you what I did. I don't know if I knew what the perfect recipe was that that's gotten me here. If anyone knew it would be great, but something worked. And so just keeping, you know, the conversation open about that and  trying to, trying to help people figure it out, people smarter than me. 

Yeah. And I think the work you do on Instagram, for example, is really powerful because you're sharing your story and sharing your story about what you did and, and the importance of community in this journey with glioblastoma is incredibly important. And I think it's so valuable to patients. So it's amazing work that you do.

So appreciating you for that.  One of the most popular questions is what's your best piece of advice for someone newly diagnosed with glioblastoma? And it's answered by over 50 people. And those 50 people include neurosurgeons like me but also neuro oncologists, patients, caregivers, mental health therapists, religious leaders you know, people experiencing meditation.

It's fascinating to see the diversity of responses that people give. And, you know, of course, some of it is medical, but a lot of it is, completely not medical, right? And I think what I've learned from talking to people like you and others on the app is everyone in this journey almost routinely advises patients and caregivers as hard as it might be to enjoy the now, to be present.

And that how, even though they would never wish to have had glioblastoma. That they've really taken this opportunity and this challenge to center themselves in, in, in the present and to enjoy their family and friends and really take advantage of each day. And I think that's good advice for anybody, right?

And I've certainly taken that to heart or I've tried to take that to heart as difficult as it is to execute on a daily basis. But I find that this living in the present piece of advice is something that I found very resonating. And I think a lot of people who watch that video have found very important to them.

And that's, that's something I think has been fascinating. And because we handpicked all these experts from across the country, you know, that from the get go, the answers on Roon are excellent and trustworthy. So we show you. Not just in text, but in video where these answers are coming from. And I think people really are enjoying the speed of that.

And the fact that it quickly points them to the place they need to go. So those are the two things I would say have been, have been fun to watch.  I love that so much. I mean, yeah, we want instant answers, but for it to be a vetted source and you have top notch  people on Rune, you have, you know, all the experts people want to talk to are on Rune, which is awesome.

This is,  Indistinct into the rest of the internet where you don't know necessarily where the source  and I love what you said about About people living in the now I think you know, it's been six and a half years for me and the first couple years All kinds of people would reach out to me and some days I could talk to them and some days I couldn't.

It would just kind of take me back to some pretty traumatic times. I had four little kids and, and even to my mom, you know, when, when I took care of her and it was just too hard. And then something shifted and I started feeling just the way you said that  the gift of cancer, and I've talked to other people who feel the same way, is, is it does kind of keep that living in the now right there, square, you know, square in your face.

Over and over during the day where we could get so caught up in all the minutia and, and of course we have to live our normal lives if we're able, but but it does come back full force over and over and over about how precious the little things are that, you know, the little things are the big things and, and I love that. 

Oh yeah, the one other thing I'll add is that,  you know, our app is organized into various areas, like topics, what we call them. And, you know, there's topics like you would imagine, diagnosis, treatment precision medicine,  clinical trials, things like that. But we also have sections of the app devoted to mental health, to caregiving.

To advocacy groups to technology options. And one of the areas of the app that people have really enjoyed is, and found useful, is the mental health section. Because we bring in expert psycho oncologists.  For example Allison Applebaum, who's a psycho oncologist at Memorial Sloan Kettering, is one of our star creators.

She also just published a book called Stand By Me. Her dad, incidentally, was at Stan Applebaum, who published that song, Stand By Me. And, you know, she talks and made a career around how to be a great caregiver, right? And caregiver mental health issues, but also patient mental health issues and how to deal with that.

We have experts from the psychology world, from the mental health world, from the meditative world from the religious world, spiritual world, all there to kind of help you. And people have really enjoyed going to that section of the app, right? Because I think when you're sitting in bed and thinking about the existential nature of all of this, it's not just information on treatment, but information that really helps you get a better quality of life.

Really appreciate you taking the time out of your very busy schedule. And I just appreciate you.  Wow. Dr. Ramakrishna, it has been such an honor having you here today.  Well, thank you so much for having me. This was really fun. And again, thank you for all the work you're doing.  And I want to thank you for being here with me today.

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