S03 EP16 ‘Does Advocacy Matter?’
[00:00:00] Lisa Laudico: Welcome to the our MBC life podcast from share cancer support, dedicated to exploring life with metastatic breast cancer. From the perspective of us, that people living with this disease and the experts who partner with us to help make our lives better. I’m Lisa Laudico and I’m so glad you’re here since no one should face MBC alone
today’s episode was a real honor to facilitate. It feels like a meet up of the true rockstar legends in our world. If anyone ever questions, whether advocacy can change the trajectory of this disease and our lives in the process, will those folks have never met these women or heard what they’ve done? Be prepared to be seriously impressed.
We have Lianne Kraemer a pediatric speech language pathologist, who at the age of 27 was diagnosed with stage two breast cancer, despite receiving aggressive treatment. Her cancer returned at age 39. Lianne’s initial metastatic diagnosis was. Brain Mets only. She’s never presented with disease outside the central nervous system, knowing that there’s no cure for MBC.
Lianne became an outspoken advocate for increased funding for MBC research.
Lianne is a member of the metastatic breast cancer Alliance. A patient led advocacy organization, also known as the MBCA. Lianne helped found the MBCA’s breast cancer brain Mets initiative, the marina Kaplan project, which aims to address the unmet needs of those living with breast cancer, brain metastasis.
She’s been working tirelessly with our other guests, Christine Hodgdon on the new BCBM website that will provide the most comprehensive repository of information for individuals living with breast cancer brain. we also have Christine Hodgkin, another frequent flyer here at the podcast who is known by so many in the MBC world.
She continues to do remarkable things by moving the ball forward in advocating for those with brain Mets and for MBC in general. Christine was an international conservation biologist when she was diagnosed with metastatic breast cancer in 2015, her background in biology and nonprofit programming is what she brings to her work of curating, cutting edge research and interfacing with patients and research partners through the grasp cancer organization.
She co-found. She’s worked with leading research organizations, medical centers, and government agencies to ensure the patient voice is represented early and often. She’s also the founder of the storm riders network, a website that shares the latest breast cancer research treatments and clinical trials.
We also have the legendary breast cancer and metastatic breast cancer advocate, Musa Mayor she was a mental health counselor for a decade before writing her first book night studio, a memoir of Philip Guston about her father. That was met with great critical acclaim. She was brilliantly on her way to her dream career.
As a writer, when in 1989, she was diagnosed with early stage breast cancer. Eventually she began writing again, using what she had learned in a memoir for breast cancer experience called examining myself one woman’s story of breast cancer treatment and recovery published in 1993. It described her own experience as well as the stories of some of the women in her support.
In 1994, Musa discovered the newly created breast cancer list serve on the internet, which opened a whole new world of shared experiences and burgeoning advocacy. She published her next book, advanced breast cancer, a guide to living with metastatic disease in 1998 to further the understanding of metastatic disease that also acknowledged the enormous, emotional and practical help individuals and caregivers needed.
She wrote in the preface to advance breast cancer outta the pain and depth of illness. New and hard. One bonds of love can be formed. Moments of beauty and clarity of mind can be savored, meaning and renewal of faith can be pursued. No one has to take this journey alone. She received many well deserved awards for her years of advocacy for the MBC community.
She’s since left breast cancer advocacy to focus on her work with the Philip Gusto foundation, an important new retrospective of her father’s art. Along with a new book, she has written called Philip Gusto.
And so I’ll start with you first Musa you were really one of the original allies, for metastatic breast cancer advocacy. And I’ve heard your name spoken. Many forums like this a long time. So it is such an honor to meet you and to hear your story. So if you could tell us how you came to become a breast cancer advocate and an MBC advocate as well.
How Musa Mayer became a breast cancer advocate
[00:05:34] Musa Mayer: Well, first let me say how delighted I am to see all of you so active and to know that there’s this larger community out there. MBC patients and allies who are so actively working, going forward. I say this in context of what the world was like for metastatic breast cancer advocacy.
I’ve been doing this for a long time when I began, which was about 1995 or six people just used to assume that I must have metastatic breast cancer myself, because why would any breast cancer survivor with early disease wanna focus on their worst nightmare? At least that was the attitude that I encountered over and over.
But I joined what was arguably the first and at some points, the largest internet mailing list for breast cancer survivors, which was actually based in Canada at that time. And, uh, this is in 1994. I had been diagnosed myself in 1989. and I had just published a memoir of my own experience called examining myself.
Mm-hmm and. My second memoir in several years. And so I was looking for a community to connect with and share about what I had written and reach out to others. And boy, did I find one at the height of this breast cancer? Mailing list. There were over 2000 people, participating, patients, partners, interested, people, professionals.
This was before you had web based communities. Everything was still mailing lists. It was for a while. The only resource, it was really quite an astounding group. And I threw myself into it and realized that I knew a lot more than I thought I did about breast cancer and that I could actually be of help to others.
And my interest from the very beginning was to help translate complex medical information into a form that people could digest and understand because you all know how overwhelming it is. To try to process everything that you’re being told at a time that you’re under such stress and within a year or two on this mailing list, the women who initially joined who’d been newly diagnosed, started, uh, having recurrences.
And there were a significant number of people with mets. And there began to be some real concern, whether they could be completely Frank and open about their experiences without scaring the early breast cancer patients. And did the metastatic patients have the patients to listen to the concerns of early breast cancer patients.
So they became. Bit of a division and ultimately 95 or 96, another group split off BC Mets was another mailing list that was administered by, uh, a man whose wife had died of brain met actually, whom I had the pleasure to know, but that community very quickly thrived and drew in. People from all over the world.
And I was approached to write another book about early breast cancer. By this time there were a number of memoirs about breast cancer. There were guides and how tos and so on. And I didn’t feel like I could make a contribution, but there was absolutely nothing for women. And. Dealing with metastatic disease as it happened because of this BC Mets group and because of the, the enthusiastic participation that people had.
I had access to all these voices. So it was my idea to put together a book comprised of people, telling their stories about different aspects of dealing with the disease from initial recurrence or first diagnosis with Denovo disease, all the way through final stages, and also to incorporate their partners and husbands.
It was a very ambitious undertaking, but that book was published in 1997 and first. Under the title of holding tight, letting go, which was a phrase taken from one of the women that I interviewed. And then the publisher decided it had to be republished with a much more obvious title. So it became.
Advanced breast cancer, a guide to living with metastatic disease. There are copies of it still floating around, but it’s long been out of print. And the medical information is, is woefully out of date, but the human stories don’t change very much as you well know. And I wish the medical information did change.
Far more rapidly than it has mm-hmm . But when I published that book in 97, patients kept coming up to me wherever I went asking me for how to make sense of treatments. And I realized that I really didn’t know enough. So I took the national breast cancer coalitions project lead course and plunged headfirst into full-time.
Research advocacy. I served for about a dozen years as a, uh, patient representative at the FDA. And I ultimately ended up developing a course with an epidemiologist from Johns Hopkins called understanding evidence based healthcare, not just for breast cancer, but for all healthcare advocates and people in the field.
And it became very clear to me that who was I to comment on or. Shed light on the direct experiences of living with met. That was not for me to do. And so the role that I found for myself, and this was a way that I could be a part of that community and help people find resources, help people understand what their doctors were telling them about treatment.
And so for many years, that’s what I did. I was one of the founding members of the metastatic breast cancer Alliance. And that was extremely heartening to me. That organizations were willing to make that kind of commitment because. In my experience with my books as I went around and gave talks and did surveys.
That was another thing for living beyond breast cancer in 2007, I think it was, I did a major survey of the experiences of metastatic breast cancer patients with an eye to looking at needed resource. And my thought was, who knows this better than the people who are living with a disease? No one. And. Most organizations that I had contact with had no idea of how to provide services and further they were staffed primarily with early breast cancer survivors who lived in fear of recurrence.
And there was a natural. Pushback. So I tried to take it upon myself to let people know that they might cope better with their own fear of recurrence. If they became much more familiar with metastatic disease. And the focus for me was always on living with a disease. And not on dying from the disease.
That’s where I saw the gap. When I first started working the only resources that were available for people living with metastatic disease and their families at that time were hospice materials and cellular insurance so that you can have money.
[00:14:29] Lisa Laudico: Here’s Lianne Kraemer
[00:14:31] Lianne Kraemer: I have to say that by just listening to you and going back, as far as you’ve been part of this is really astounding to me as both a patient and an advocate, and especially looking at your, I don’t wanna say just, but you were an early stage patient and you saw the need for patients with metastatic disease and, and did something about.
That speaks volumes about you because a lot of patients are just who are metastatic can’t advocate for themselves, especially depending on how ill they are. So thank you so much.
[00:15:08] Musa Mayer: Oh, sweet. I had. A golden opportunity. Since I had discovered the breast cancer community online, I very quickly saw that online communities were gonna be hugely important to metastatic patients, not just in breast cancer, but all cancers, because the kinds of support groups that had existed up to that point were in person.
A certain time every week or every two weeks or every month and people who are an ongoing treatment, can’t do that. People who are at more advanced stages of illness, can’t do that. You get inevitably the kind of isolation and loneliness and lack of support. And all of a sudden there was this possibility that people could support one another throughout the entire course of the illness and long time ago in.
Youth, my early training was in mental health. I was a counselor and I worked with groups. And so I was always very interested in facilitating that process, but just to be in the role of the facilitator. And I like to think that that’s what I’ve done. For metastatic breast cancer.
[00:16:33] Lianne Kraemer: You hope to answer a question of where did this come from by saying your background was in mental health because you know, you had the foresight to see what patients with metastatic disease were going through.
Can I ask you transitioned from no. Online. I would notice thing as the internet to people being online to creating what we know is that the website with brain Mets and brain metasteses what led you to that?
[00:17:00] Musa Mayer: Two things. One thing I forgot to mention is that my in person support group of nine women.
was hugely important to me in the early years. And so I had a sense of what women could do for one another. Especially as some of them had recurrences, ultimately we lost six of the nine. We still stay in contact a bit, those of us who were surviving, but we had to cope with those losses. The challenges of that.
So I came into these online experiences with some sense of what that entailed, but you’re asking about brain mets what led me to that was a wonderful researcher whose work. You may know, patriciate at NCI, very familiar, pat, Steve applied for and received a center of excellence grant. A five year grant from the DOD breast cancer research program to study brain metastasis in breast cancer.
And we were certainly aware of each other since we both had presented a new one, another from MBC C conferences. And she invited me to be an advocate on that center of excellence. And I invited Helen Schiff to join me. So we met with the
researchers. We learned some of the biology of brain metastasis is some of the frustrating lack of progress, the limitations of treatment and Helen and I.
Made it, our focus to learn everything we could about this aspect of the disease. It was the first time I had really focused very specifically on an aspect, uh, and obviously a neglected aspect of metastatic disease. I guess I’m drawn to neglected areas and neglected populations. So Helen and I decided we needed to create a website that had multipurpose actually, but primarily for patients, but also for researchers someplace that would aggregate all the available, uh, Information and studies the clinical trials, everything in one place, but that would also incorporate women’s stories about various aspects of treatments, some sort of basic explanations of the, I have to say very crude treatments that existed at the time.
And. Still are the OneStop place that people could go. And we spent about, oh, maybe nine months putting that together. There was no funding for it. So I had to teach myself how to use open source software to create it, which was a bit of a nightmare, but we got it up and running in. I think it was February of 2007.
Mm-hmm we. Actively kept it updated sorta by which we didn’t update the full site. We updated the clinical trials listing and the important research listings for about 12 years. And I can’t tell you how thrilled I am to know that there will be another brain month site available because it is so needed and ours was so widely used.
Favorably reviewed by patients. It’s the most frightening aspect of the most frightening disease. So just to know that people were calmed and able to get information and support was really important.
[00:21:03] Lianne Kraemer: Well, it was the first ever website dedicated to. An area that you set and still is very neglected.
[00:21:10] Lisa Laudico: Here’s Christine Hodgdon
[00:21:12] Christine Hodgdon: and we’re excited for the reboot of the website. And we’re gonna get to that in a little bit. I wanted to ask you MuSA cuz you have been doing not just advocacy work, but you’ve lived through an early stage diagnosis and I’m just really curious. What have you seen change the most in MBC?
I get asked this question, but I’ve only been a metastatic patient for six years now. And I can’t see a whole lot of change in six years, but I imagine over decades you have seen some real change.
[00:21:44] Musa Mayer: I think that all depends on your expectations. When I started. A woman who could say I’ve only been a patient for six years.
That would’ve been extraordinary. I wish I could say overall that I’ve seen dramatically improve survival, but it has been. Improved in some patients as you, the development of therapeutics has been very much related to the subtype of breast cancer. So when I first started doing this work, there were no treatments for her two positive metastatic disease.
And these women died within months. Of their metastatic diagnosis very often. And there have been many more treatments developed for them. I’ve seen a lot of positive change in, in palliative care. I was one of the people who served on the faculty of the ABC. 1, 2, 3, 4. I think that’s, as far as I got was four conferences and I was asked to be on the committee that selected the honorees, the researchers.
Would get special recognition each year. And I recommended Ron Coleman, a British doctor who had done the, the really groundbreaking research on bisphosphonates as treatment for bone metastasis. One of the women in my original support group had terrible bone mets certain experiences get burned in your brain when you’re with somebody who’s just intractable pain.
They, to the point that they had to sedate her for the last weeks of her life, because her bones were just dissolving. This is how life was for so many patient. At that time, the progress that’s been made in terms of slowing the progression of bone metastasis is phenomenal and underrecognized. I think the drugs that are given to controlled side effects of treatment are much better, much more targeted, fewer side effects.
I think those are the areas that I. I see the biggest change, but obviously for women with triple negative disease who are metastatic things, haven’t changed very much. And continuous treatment is still how it’s treated and. So it’s discouraging women with Denovo. I worked on a research study with an epidemiologist as part of the metastatic breast cancer Alliance from the Seattle area who had a very large database of patients.
Who’d been treated over 20, 30 years in their facility. And we were able to look at length of survival. Particularly Denovo, but also recurrent patients and see some what I’m reluctant to say big improvements because the disease still kills women. Let’s be honest about that. Right. But more and more, you see these long term survivors who are living with pretty good quality of life and whose disease is under control for a long time for women of color, for minorities, for the poor.
Not much has changed at all. They still don’t have access to treatments. They still don’t understand for the most part, what options are open and it’s a tragedy. We see as middle class, well insured, largely white populations start doing better. The gap, the inequity with poorer populations, underinsured populations just becomes larger and larger.
There’s no way in which that’s only true of breast cancer, but it’s certainly. The case
[00:25:47] Lisa Laudico: you did such a beautiful job explaining how your passion for advocacy developed, even though you were an early stager. And I think that when we talk about how much has changed, unfortunately, I don’t know if Lianne and Christine feel the same way, but unfortunately I think there’s.
Still is that divide between early stages and individuals living with MBC
I wanna switch if we can, to all the exciting things that are happening today in really stemming from your groundbreaking. So, this is a question for Lianne and Christine Musa is a legend. So everyone knows about the, the work that she’s done. And how did it impact your decisions regarding your own care and your own advocacy?
Cause I know that Leanne you’ve looked at Musa’s work and referred to it.
[00:26:43] Lianne Kraemer: So, yeah, I’ll just say that, you know, I was diagnosed with brain Mets. My me, I had an early stage in 2014 and then recurrence in 2016. And my only side first and only side of metastasis has been to the brain. As you can imagine that’s quite a devastating diagnosis.
And so what does one do they Google it? And that’s how I came to encounter your website. It was definitely the first place that I found that had this independent sense of information about what brain metastasis were the treatment prognosis clinical trials, a one stop shop for all of those things. And I would go around the internet and look at other things, but always kind of ended up coming back to that website.
It was at, in the beginning, very invaluable to me because when my doctors were talking about certain things, my first line of treatment was a clinical trial. I was able to go back and look again at your website and. Focus on the information there. Outside of that, there was just lots of research articles that I would run into that talked about treatments and prognosis, and they were very cold and clinical.
And I’ve talked about this for before with others that, that research articles talking about brain mets could be. Just really harsh and using words that are like dismal. Yes. Dismal. And so instead of your website, focusing on that, it went the opposite direction. Empowering me. I am incredibly grateful that it existed for me in the beginning.
To use that as a site where I didn’t have to go somewhere else and look at very clinical information that was done in by a scientist, not thinking about what a patient’s perspective is. So it was a blessing for sure.
[00:28:49] Musa Mayer: Thank you. That makes me feel like all that hard work was really worthwhile.
[00:28:55] Lianne Kraemer: I can tell you that it really was because it really did benefit and you, it was always in the back of my head. So my advocacy started out very slow. And then once I’ve got really into the thick of it, it’s always been in the back of my head about how can we do more with this website? So now that we have that opportunity, it’s really exciting. And we’re building off of. What you did. So we’re really grateful. I’m really grateful that that existed for me to give me the, not just something to use as a resource, but later on in, in my advocacy, work a template for what the patient will need moving forward.
[00:29:41] Musa Mayer: Excellent.
[00:29:42] Lisa Laudico: What about you, Christine?
[00:29:43] Christine Hodgdon: Honestly, I cannot remember when I saw the website. I have a feeling that Leanne probably introduced it to me. I don’t know Lisa, if you want me to talk a little bit about where the idea came from for the brain Mets initiative, very similar Musa to what you experienced.
Whereas you said that it’s like brain meds is like the scariest of already a scary category. So it’s metastatic is scary and then brain meds is even scarier and. I, I was diagnosed with metastatic disease in 2015, but very limited metastatic disease. I had one met in my lung. That was very small. I’ve basically been N E D for six years now.
So no evidence showing no evidence of disease and. I had friends that had the same subtype of cancer that I had not responding to their treatments. And several of them actually did develop brain metastasis. And I think I saw firsthand how little information there was out there for these patients. These very vulnerable patients that are facing a very serious, scary diagnosis.
Um, prognosis potential side effects, very invasive treatments. For me, it was similar to you as being like an ally. I felt, okay. I, myself don’t have brain metastasis, but these patients need our help. They really need, they need somebody to go to bat for them. And Lianne and I met in, I think, 2019 at the San Antonio breast cancer symposium.
And I think I met Lianne through my friend, Amanda, who was a dear friend of mine. As I mentioned, she was one of the patients that had, uh, the same subtype that I had just could not respond to the, her two treatments that she was receiving. And, um, she did eventually she did develop brain metastasis and I had to watch her go through trying to qualify for clinical trials and then subsequently being removed from a clinical trial one that was practiced, changing the destiny trial with DS 8 2 0 1 now known as inherit to.
Her brain mets were actually stable, but her liver had progression. And so she was removed from the trial, but they had not seen regression in her brain meds on any treatment that she had been on. And I think at that point she had been on over a dozen lines of treatment and that drug was the first one that actually showed regression of her brain metastasis.
So that struck a nerve. She later died from her disease and not long after that, another woman that was close to Amanda, her name was marina Kalan. She had been diagnosed with metastatic triple negative breast cancer. And we already talked about the major disparities that we have with this subtype. And she had lived six years with metastatic triple negative disease, but in the last year of her life developed brain metastasis, same problem could not qualify for a clinical trial.
Even though her brain Mets were stable and she died soon after that, about six months after Amanda and it really hurt, it was very painful to watch. It was like, it was just heart wrenching to see these two people literally fighting for their lives and, and nobody really doing anything about it. And so I decided to attend the brain metastasis annual conference hosted by SNO the society from neuro oncology.
Uh, it was the first one they had, they convened all the experts. Pat, Steve was one of the people that spoke among several others, and this was not just breast cancer. This was just any type of cancer that has a propensity. Spread to the brain. And I was very excited and eager to learn, and I was hoping to gain all this knowledge.
And what I learned was we don’t know anything. And that was the most, it was very heartbreaking because I was so excited and had, I had real hope that I could. Maybe change the trajectory of my friends at that time, they were both still alive. Both Amanda and arena were still alive and I thought I’m gonna learn something that’s gonna help them.
And it was shocking to learn that we don’t know that much, that actually we don’t have that much research that there’s so few clinical trials that we can’t really pull the data from them because there’s just not enough. And so I decided through the metastatic breast cancer Alliance, which I now know you’re a founding member of, I did not know that earlier , but again, just the Alliance has been really wonderful supporting me with this initiative to address the unmet research needs in patients living with brain metastasis.
So I, I don’t know when I pulled Lianne in, but like she’s an expert in brain meds cuz she’s been living with that. I pulled other advocates that have been living with brain metastasis because again, I do not have brain mets, so. I wanted to make sure I was representing the voice of patients who do, and there are very unique needs of these patients.
And I think, especially with breast cancer, we’re really lagging behind some of the other cancers like melanoma and lung. They, they tend to, you know, respond to immunotherapy treatments where we do not. And so they seem to be managing their brain. Metastasis is much better than we are. So I really, we really identified that breast cancer is truly a.
A cohort of patients and, uh, furthermore with people like Lianne we’ve discovered, identified some weaknesses in the research, some research gaps that show that the majority of patients, as you mentioned, have HR positive disease. And what we actually see is that the majority of patients living with brain meds have HR positive disease.
And when you look at trials or research, anything, it’s always focused on her two and triple negative. So this has been a really exciting area that we’ve, uh, explored because we have so many patients with hormone receptor, positive disease that have literally no options. And I’m really proud to say that when you had talked about, have we worked with researchers, one of the researchers that we worked with.
I’ll mention her name here. Diana Elli at Colorado. She is the only person that I know of that is looking at HR positive disease, uh, and brain metastasis. She’s a basic science researcher. And with our help, she was really great about asking for our feedback. She was just, um, awarded a D O D grant of a million dollars for three years.
excellent. Excellent. And we were. I can’t tell you how I have happened to be at a conference with her when she got the email. And literally both of us were just crying. I texted Lianne immediately. I texted all the other members of our subcommittee to say it, it worked what we did helped. It really made a difference.
And she kept saying, I give all the credit to the advocates. We, I give credit to her for her sound science. She had some really solid science that she had worked really hard on, but she also gave us an opportunity to be heard. She listened to our feedback and we’re very proud of where this initiative started and where it’s gone and very graciously a CGEN who we.
Targeted as a pharmaceutical company that really is designing groundbreaking trials with the hertu Kline trial that led to the approval of Tucatinib now Tukysa. Am I saying that right? Is it Tukysa? I only know. I always forget the brand names. I always know the original drug names, but they were. Our model that we want us to say, how did you do that?
And how do we make other pharmaceutical companies do what you did? We wanna make sure that we are including patients with brain metastases and trials. And frankly, I wanna see patients with not only stable brain mets, but active brain mets and Leptomeningeal disease. These patients are really underserved and we need to see more so C-gen
graciously provided funding for this website. And like Lianne said, we are so grateful for your template. And so we’ve been using your yours as a template and then just updating it with new information that like, I know the, her two client trial is new, actually, that wasn’t advance that I saw in the six years that I’ve been living with metastatic disease.
That there’s actually a drug approved specifically for patients with brain metastasis. So. Where it all started. We’re very much looking forward to where this takes us. We’re really hoping to create a community of patients that are living with brain metastasis and Leptomeningeal disease that they don’t feel alone.
[00:37:54] Musa Mayer: Wow. That’s incredible. Thank you both for sharing all of that. It’s so exciting. I haven’t been. Involved in advocacy since 2015, that’s the year that I retired to do other work that I needed to do. And so hearing these advances, because during the years that I was working with Patte and tending to this brain Mets website, there were really only two significant changes in treatment.
And one was. Women were no longer being given whole brain radiation. Just as a matter of course, mm-hmm, targeted focused. Radiation became much more standard and the clinical trials were done that showed that. The outcomes were as good or better. And quality of life was maintained for a, a longer time.
That was really significant. And the other change we saw, which was subtle, you couldn’t easily find it on the website, but when we. First listed clinical trials. It be, it was very difficult to find trials for metastatic patients that did not exclude any patient with a history of brain metastasis, whether or not it had been resolved.
But by the time we finished with the website, that was far more common and you may notice how many more listings there were in the later years, but of course the brain Mets had to be dealt with. They couldn’t be active. And I agree with you a hundred percent about active brain met and, and Leptomeningeal disease.
Unfortunately, the issue. The people who design trials always say is that they wanna isolate the, the issue. And the more factors you introduce into the mix, the harder it is to make sure that what you’re doing makes a difference, but we need more of these trials that are. Broadly appealing to patients and that are not so selective for sure.
[00:40:18] Lianne Kraemer: And that’s where we’re really right now where our advocacy, when it comes to clinical trials. We know that historically, if you ever had a brain met, ever, it could have been five years ago. You weren’t allowed on the trial if you had a history. No, absolutely not. Even if it was removed surgically and they do now a lot of trials, not all, there’s still some that exclude stable brain Mets.
You’ve had a history with them or they’ve been treated. But where we are finding now that we’re really pushing really hard as Lisa alluded to at the beginning, not necessarily moving mountains, but really trying to budge and pushing on them hard is to get pharma companies, to see the importance of including patients with active progressing brain mets.
And that’s a space that I’ve lived in for five years. My brain mets have been there. We’ve rated, but they’ve been active in progressing that entire time. And I’m hormone positive. It’s kinda an odd little place I fit into, but that’s what that’s a big piece of our advocacy is really pushing. And the trial that Christine mentioned, which was called her two climb, and it led to the approval of the first drug for brain Mets, the Tukysa drug.
We’re hoping that set a precedent and that more pharma companies will become motivated to conclude brain mass because of it. Mm-hmm
[00:41:50] Lisa Laudico: I wanna take some time to talk about the new website, which will help people like Lianne who are living with brain Mets. So give us a little bit of an overview of Christine.
What are the objectives of it? Who is it for those sorts of things?
[00:42:07] Christine Hodgdon: Yeah. I’ve been working on it this morning, myself sending Lianne some notes and things like that, but we we’ve done a lot of work already. We worked all summer mostly to, to get the content up. And like I said, we’ve got great templates to work from and what we really want.
We have a general navigation menu of learn. Listen, explore. It doesn’t have to apply just to brain Mets patients. We know that there are certain subtypes that like to go to the brain. And so people might just want to arm themselves with knowledge before they have any brain metastasis. Maybe they’re a caregiver who’s interested in helping.
We have a lot of patients that have like a mother that’s dealing with brain metastasis or a sister, and that can be for caregivers, but it really is geared towards patients living with, I should say, CNS metastasis, meaning central nervous system metastasis. So brain and or Leptomeningeal disease and what we want our patients to be able to have a resource, very similar to what Musa explained the one stop shop, where they are looking at evidence based data.
We’ve got experts in the field who are gonna be reviewing this content and they can feel confident and empowered to speak to their clinicians either about treatment options or even clinical trials. So one of the pieces of the website’s going to include a clinical trial search, which I am super excited about.
So it’ll be, um, Using the breast cancer trials.org, they, they have already a wonderful search engine that allows you to input information about your breast cancer. And then it filters the results. And we’re collaborating with them to bring a brain Mets, lepto Mets focused trials. So patients will be able to see, and, and even though there are, we still have a long ways to go and we need more trials.
These are gonna be, it’s gonna be globally represented. So we have about a hundred and so 150 or so trials. For which a brain Mets or lepto patient would qualify for. And so we’re very excited to bring that piece to it. And we’ve already had a lot of clinicians reaching out to us, asking if we can promote their trial.
And we said, absolutely, we’re excited about that part of it. And then we’re also gonna have a. I think this will be more phase two of the whole website, but we want to share stories of patients living with brain metastasis or Leptomeningeal disease. We want them to, you know, offer, let people know that they’re not alone, that, that it is a scary diagnosis, but that you, there are people who are actually living full lives.
Even with this diagnosis. I think lastly, we have, we, we would like to highlight any institutes or research programs that have a dedicated brain and spinal Mets program. So we’re gonna have kind of a list of like places where you can seek a second opinion. We know that not EV most people are treated in a community setting.
And a lot of people don’t even have access to a neuro oncologist. So we’re not saying that we expect everybody to get the best of the best treatment because it’s not feasible for everybody, but we do recommend that people do get a second opinion. If they are diagnosed with brain, the tests from an NCI designated cancer center.
So we’re gonna be offering those kinds of resources to patients. So we’re really just trying to give patients tools. To educate and empower themselves to help manage and make treatment decisions about this diagnosis.
[00:45:28] Lianne Kraemer: Well, it’s one of those things also we’ll want it to be as dynamic as possible. So we’ve got this phase one, and then we’re thinking ahead to what we will attack in this second portion of it.
And, and that means like keeping up to date on whatever the latest research articles we also wanna have, you know, a calendar that we can provide. Patients with webinars that may be happening or cause there’s all kinds of things that exist now, especially since zoom and all this has become so prevalent with the pandemic that there’s lots of webinars on brain metastasis and whether it’s a scientific conference or just a, you know, webinar put on by an advocacy organization, we wanna inform patients so that they can keep up to date and maybe attend some of. So keeping it dynamic will be another part.
[00:46:18] Lisa Laudico: That sounds amazing. I wanna wrap it up for us today by just asking each one of you. What is giving you hope? Do you wanna start Musa?
[00:46:26] Musa Mayer: What gives me hope is that there are women like the three of you and all the others. That you’re in touch with, who are working on behalf of metastatic patients.
That’s an extraordinary development to me that is the most fundamental change. And I trust that out of your commitment and your reaching out to one another, that changes will really happen in the scientific community that breakthroughs will be made. And I think as advocates you have. Enormous power to increase research, to help researchers focus on what really matters to patients.
So it gives me just a wonderful feeling to know that this work that I devoted all these years to is being carried on by you. And I’m feeling a little wistful right now. That I’m not as in touch. So I hope that you will let me know, just shoot me an email when you launch. And I will look at everything that you have on your website and I will follow the work that you’re doing. I think it’s worth,
[00:47:47] Lianne Kraemer: you would love your feedback. Of course,
[00:47:51] Lisa Laudico: I’s always a seat at the table for you Musa I don’t think there’s.
[00:47:54] Christine Hodgdon: I was just gonna say, anytime you wanna jump back into advocacy, don’t worry. There’s plenty of work to,
[00:48:00] Musa Mayer: oh, there is
[00:48:02] Lisa Laudico: indeed. Okay. How about you, Lianne? What’s giving you hope right now.
[00:48:07] Lianne Kraemer: Oh gosh. That is funny. That changes from. Month to month, year to year. I think the big thing that gives me hope is my oncologist. Dr. Nancy Lynn is an expert in brain metastasis, and I’ve been seeing her for five years now. And she and I have been collaborating and, and as time goes on, we are able to do more and more projects together.
And I really, the BA things had this wide eyed belief that things would change and they didn’t. But now I, I really do have some cautious optimism that things for the brain, things are changing overall immensely for, you know, the amount of treatments that have been approved and just in the last year from Tucatinib and, and those are really wonderful drugs, but from the brain Mets perspective, I really do have hope that we are going to see change.
I really think that pharmaceutical companies are really going to start. We have already seen one, that’s gotten very involved in brain Mets, and I think they’re really finally realizing that you can’t just address the neck down. That metastatic disease is a systemic disease from head to toe. And that if you, you just, you have to address what’s happening in the brain and radiation.
Isn’t the answer necessarily. And that they really can be a part of improving on the quality of women’s lives with breast cancer, brain metastasis, and the, the length of our survival by addressing this. I think it’s finally clicking for them. So that gives me hope right now, for sure.
[00:49:56] Lisa Laudico: Yeah. Thank you for that. What about you Christine?
[00:50:00] Christine Hodgdon: Yeah, I think this is a really wonderful conversation. That’s been actually good for my soul. because in the day to day act advocacy work, I can get very frustrated. I feel like there is no progress when you’re looking at it every single day. It’s really hard. But with you said, being able to look back decades and to say you live six years as metastatic disease, like that’s incredible.
I’m a triple positive patient. Was diagnosed with a very aggressive her two at 34 metastatic from the beginning. And so it’s really good for me to be reminded how far we’ve come. And that does give me hope that Lianne and I, and all the other advocates that are part of this initiative have a lot of work to do.
We, we recognize that, but that. With advocacy does come change. And so I’m just really grateful to Musa for sharing all of the experience that she’s had. And to show me that yes, in fact, um, we have made a lot of progress and yes, we have a lot, a long ways to go, but progress has still been made and we need to acknowledge that.
So thank you, Musa .
[00:51:07] Musa Mayer: Oh, thank you.
[00:51:09] Lisa Laudico: What’s the name of the website?
[00:51:11] Lianne Kraemer: It’s mbcbrainmets.org. Okay.
[00:51:16] Lisa Laudico: So it’s MBC brain mets.org. Okay, fantastic. That’s gonna be a huge lift for the metastatic breast cancer community. Thank you so much for all your work.
[00:51:29] Musa Mayer: Thank you all for, including me. Oh,
[00:51:31] Lianne Kraemer: we’re the lucky ones. So I am just, I’m thrilled to have met you and I can’t wait to actually show you our new site.
[00:51:45] Lisa Laudico: This podcast is produced and edited by me. Lisa Laudico sound design and original music from Konner Kienzle and Samantha Silverstein. Our executive producer is Christine Benjamin senior director. Of patient services and education at share cancer support, you can find more episodes of our MBC life, wherever you get your podcast.
Be sure to subscribe to our news blast rate and review us and look for a new episode every Monday. Check out our blog and full episode notes @ourmbclife.org. We’d love to hear from you.