Introduction to Christine – Breast Cancer Patient and Advocate
My name is Christine Hodgdon and I’m a metastatic breast cancer patient and advocate. I was diagnosed in 2015 with triple-positive disease, so I was HER2, ER/PR-positive. And I was actually also diagnosed with thyroid cancer. Throughout the diagnosis, we found out that I had actually become metastatic. So I was de novo metastatic, meaning from the very beginning I was stage 4. And I went through four months of weekly chemo, a surgery, actually a double surgery, with a lumpectomy and a thyroidectomy. And then I did radiation and after radiation I started hormone therapy.
Screening for Brain Metastasis
I actually got involved in brain metastasis advocacy when I, myself, had a scare. I am HER2+ and these patients are considered high risk. There is a high propensity for breast cancer to spread to the brain in both HER2+ and triple-negative breast cancer. Although we do see a lot of patients with HR+ disease who also have brain metastasis.
I had a scare where I kept biting my tongue and it really hurt. And I kept telling people, “it’s really weird, I keep biting my tongue.” And they would say, well, that’s not that crazy, like people bite their tongue. And I was like, it’s just happening so often. And one morning I just stuck my tongue out and looked, and half of it was completely paralyzed.
And it was really scary actually. And I called the hospital and said, okay, something is going on. I’m on Tamoxifen, so they thought maybe I was having a stroke, which I was pretty sure I was not because it had been happening for a while. But we went in and we did an extensive brain MRI and trying to test all the different nerves to see what was going on. Then I also did a lumbar puncture, also known as a spinal tap, just to make sure there were no circulating tumor cells in my cerebrospinal fluid.
After that, everything came back negative and I did not have brain metastasis. But we did start screening for a brain metastasis every year. And I know that that’s not standard, but my oncologist and I worked that out. We have an agreement that we’re going to check my brain once a year. This past year, I actually had really terrible migraines and because of all the work I’m doing with brain mets, it started to scare me a little bit that maybe there was something going on. And we did a brain MRI, which had only been six months. But you know, I work with my oncologists and I encourage patients to do the same that if they are having any symptoms, they should definitely talk to their oncologist.
Becoming an Ally
I think it’s really important for patients that do not have brain metastasis to advocate for those who do, just as I feel like early stage breast cancer patients should be advocating for metastatic patients. Brain mets patients have a worse prognosis, they have really invasive treatment options – things that can affect their quality of life, and they can be really debilitating.
And so I just feel like this is a really vulnerable cohort of patients that we should be helping. We should be fighting for more research, more clinical trials, more treatment options for these patients, because sometimes they can’t fight on their own.
So, like I say, I think, it’s sort of stage 4 and metastatic is kind of like in the misfits of the breast cancer community. And brain mets is just another level of that, where people are really scared of it. It is a really scary diagnosis. But I do think that there’s a lot that we can do to help these patients.
I think there are several things. They can be big or small, right? You can create a website. You can work at your local institution with patients providing peer to peer support. So if somebody gets diagnosed, you can be part of a helpline, for example, helping patients cope with this diagnosis.
Sometimes it can be really simple. I want to just share an example of – I am a patient at Hopkins. I live in Baltimore. And I’m very close with my oncologist; I work very closely with her. We’ve developed a research advocacy program together. And through that program, I’ve gotten to meet lots of different researchers and one of the researchers I met was Dr. Daniele Gilkes. She has her own lab and she’s a basic science researcher – so not an oncologist. And she had approached me about a DOD grant that she was submitting for. And it was a really interesting proposal and it had to do with hypoxia and it was a drug that I understood to be a small molecule that potentially could cross the blood-brain barrier. So I just asked her, I said, does this work in the brain? And she said, I have no idea. I don’t know. Let me find out.
And you know, what she did was she was able to go back to some folks that work on glioblastoma. And now part of her lab is dedicated to creating animal models for brain metastasis, which is an area of really lacking. We really struggle to replicate brain metastasis, to replicate what it looks like in a breast cancer patient in animal models.
So sometimes just a simple question of “does that work in the brain?” You know, if you work with your oncologist and they are running clinical trials, you can talk to them about making sure that they aren’t excluding brain mets patients. Or maybe they’re sub-stratifying, meaning they’re allowing patients, but there’s different degrees. So some patients can have active brain mets, some can have stable, some have none.
This is a very doable protocol design; it’s been done before with the HER2CLIMB trial for tucatinib, now known as TUKYSA. And so I think that it’s just a constant, I’m always just pushing, pushing, pushing. So even if I’m reviewing grants for DOD or for Susan G. Komen – you know, you can ask. I mean, I write in my reviews, why are you excluding patients, or why aren’t you looking at this drug in brain metastasis? So I think asking a lot of questions, pushing these are really effective ways to really be an advocate to these patients living with central nervous system disease.
Friends as Inspirations
So once I had my diagnosis in 2015, after a couple of years I kind of fell into advocacy and I met two really amazing patient advocates. One of them was living with brain metastasis and she had the same subtype as I did. Her name was Amanda De Fiebre. And she and I became really, really close.
And I started helping her look for clinical trials when she was running out of options. And she actually was able to get on the DESTINY trial, which is now a practice-changing trial. It’s a drug that’s been approved for patients with metastatic breast cancer who’ve had prior lines of treatment.
And it was amazing when she got on this trial because she had had brain mets. She had had a craniotomy and she had even had an Ommaya port, where she can get drugs directly to the cerebrospinal fluid. But this drug actually gave her regression of her brain metastasis and she actually saw for the first time that her mets were shrinking in her brain.
Unfortunately, her liver did not respond. So she was taken off the trial when she had some progression in her liver, and she died from her disease about eight months later. And I will say again, she did not die from the brain metastasis. She died because she was taken off a trial that was actually doing really well for her, but the liver was having progression and she just wasn’t responding there.
So this was all in 2019 when she was on the trial and then taken off the trial. And around the same time, another friend of mine named Marina Kaplan – who was also very close to Amanda – she had been living with metastatic triple-negative breast cancer for almost six years. But around 2019, I think it was early 2019, she developed brain metastasis. And she was trying to qualify for trials, but she couldn’t because a lot of trials will exclude patients with brain metastasis. They will often allow for stable brain metastasis, but many patients who are stable don’t necessarily need a trial. So, Marina was not stable and she could not qualify.
So between these two friends who were also very close, I wanted to learn more about brain metastasis. I just felt like there’s gotta be something I’m missing here. There’s gotta be more research going on. There’s gotta be trials that allow and actually require patients to have brain metastasis.
And so I attended a conference called the Society for Neuro-Oncology Annual Brain Metastasis Conference. It was the first one that they had ever had in New York City in 2019. And when I went to that conference, I learned that we really don’t know that much – that actually there is not a whole lot of research. There’s not a whole lot of trials going on. And the few experts that we convene together for this conference, they came from different cancers – melanoma, lung, breast, and a few others. And they all kind of said the same thing that, yeah, we really need to do better. We need more, we need more research. And the number of clinical trials that were investigating patients with brain mets – extremely low.
I even learned more about this additional central nervous system diagnosis called leptomeningeal disease. And for those patients, the situation’s even worse, we have fewer trials and not many treatment options. The only options right now are really chemotherapy and/or whole brain radiation. So very invasive treatments that can really affect a patient’s quality of life.
So I attended the conference and just kind of felt really empty afterwards. Like I had no answers, I had more questions. I wanted to do something more. And I decided to start an initiative through the Metastatic Breast Cancer Alliance – which I’m a member – to address the unmet research needs of these patients.
And in that time from going to the conference to developing the initiative, I lost both Amanda and Marina. They both died, maybe within, three or four months of each other. And it was brutal. It was some of the hardest losses that I’ve had. I’ve lost a lot of friends in this community, but losing them was really, really difficult. And I actually started another organization called GRASP – Guiding Researchers and Advocates to Scientific Partnerships. And that was really in honor of Amanda. She really inspired that.
And then the Marina Kaplan Project was for Marina, to honor her. And I should say that these two women were amazing advocates. I mean, I’ve never seen anything like it. Really like going after researchers, asking questions, putting people on the spot, really fighting for themselves. And I just realized, I could really be an ally to these people. Like they need me, you know, they need help.
And now it’s become one of my major life missions and life goals is to help patients living with brain metastasis and to change the game. I want to make sure that we have more research. I want less exclusive criteria for the clinical trials. And I want more clinical trials – not just allowing stable brain mets patients, but actually allowing patients who have brain mets and lepto so that they can actually study and see what these drugs are doing in the brain.
So, both of these women really have inspired me. And I do hope that I can help other women down the line. Other patients, I should say, men also get breast cancer. But I really do hope that I can help others with, you know, providing resources for patients living with brain mets and/or leptomeningeal.
The DESTINY-Breast01 clinical trial investigated the drug DS-8201 (also known as trastuzumab deruxtecan, T-DXd, and Enhertu) in patients with HER2+ metastatic breast cancer who had previously been treated with Kadcyla (also known as trastuzumab emtansine or T-DM1).
One of the first things that I did – I don’t think I even realized that it was me advocating for myself. But one of the first things I did was I started creating a list of clinical trials that I might qualify for if I were to have progression. This is actually pretty early on in my diagnosis. It was around 2017, I had been living with metastatic disease for two years and I was just getting nervous and antsy that the stability wasn’t gonna last, that I should really make sure that I know what I’m doing if, if I were to have progression.
So I first started by looking at just HER2+ clinical trials. Then I learned about how your subtype can actually change. And I thought, well, maybe I should look at ER-positive and triple-negative. And so I started this list, which ended up becoming a database. And from that, I decided let’s just make it a website. Maybe this’ll help other people, maybe other people would be interested in, you know, these trials that I’m finding.
So I created a website called thestormriders.org. Storm Riders is a nod to my father, who I lost from a rare type of cancer. He loved The Doors and “Riders on the Storm” was one of his favorite songs. And it kind of felt like that as a breast cancer patient going through this metastatic disease and diagnosis.
So, I created the database, I actually attended the San Antonio Breast Cancer Symposium, and I wrote a big summary about the conference. I posted it on the website and then I kind of just like, put it out there. And it was wonderful because I got a really great response and I had patients coming to me, asking for help and, you know, feeling like they were at the end of their lines of treatment, what should they do?
And so I started, you know, compiling, even making a bigger list. So I was looking not just at trials that were for breast cancer, but advanced solid tumor trials. And I was actually looking at brain metastasis trials and liver metastasis and things like that.
And as I was doing this and compiling all this information, I often would include the exclusions so that when a patient is looking, they can just very quickly see what is excluded. And it was like every single trial excluded brain mets patients. I mean I can literally quote the wording because it was so common. It was clearly like a “cut and paste” that they would use from previous protocols. So, that really, you know, was concerning that there were so many patients, there were so many trials, excluding patients with brain mets and definitely trials, excluding patients with leptomeningeal disease.
So, part of this website, which I’m really excited about, is we now have an option for searching for clinical trials for patients with brain mets. And you can even, you know, sort it by whether you have stable brain mets or active brain mets. And it’s a collaboration with breastcancertrials.org – very reputable organization. I’ve been consulting with them for years now to make sure that they have all the trials for which a breast cancer patient may qualify. And they were very excited to take on this collaboration and project to make sure that we’re bringing trials. We’re making it easy. We’re taking the burden off of the patients and making it really easy for you to find trials.
And you can even sort by treatment type and interventions. So chemotherapy, no chemotherapy, radiation, things like that. So there’s going to be a lot of different options. And I think it’s the first of its kind. There’s nothing like this that exists. Let alone just a brain mets website, in general, but this one actually has trials that you’ll be able to filter and search for yourself. So I think it’s going to be an amazing tool for patients.