S01 EP05 – Focus on Brain Mets Advocates

[00:00:00] Lisa Laudico: From share cancer support. This is our MBC life, a podcast dedicated to exploring life with metastatic breast cancer. From the perspective of us, the people living with this disease and the experts who partner with us to help make our lives better. I’m Lisa Laudico welcome. So glad you’re here since no one should face MBC alone.

Our MBC life podcast is for the MBC community developed by people, living with NBC in an effort to amplify marginalized, voices, share stories and experiences. Our first guest is Christine Hodgdon she was diagnosed with MBC at 34 and is currently N E D. She is now a leading patient advocate and has participated in events that bring scientists and survivors together.

Christine’s also been meeting and talking to senators and members of the house of representatives in an effort to increase government funding on the NIH budget towards MBC research. She, along with Julia Moz founded the patient led. Guiding researchers and advocates to scientific partnerships or the grasp initiative.

The grasp initiative acts as a guided walkthrough at scientific poster sessions, presenting recent research and developments in breast cancer at the San Antonio breast cancer symposium, scientists present their posters, which could be overwhelming and confusing for a breast cancer patient. Trying to learn.

Grasp helps identify the posters to look at explains the topic and answers any questions. This is such important work. As it empowers cancer patients, allowing them to educate and advocate for themselves. It also allows scientists and researchers to speak more directly with the women and men. They are doing research to help giving them a heightened sense of urgency and purpose.

Also with us is Nunny Reece who was diagnosed with metastatic breast cancer three years ago at the age of 39, after being told she was stage four, this mother of three took it upon herself to become educated about metastatic breast cancer, attend conferences and talk to her community. Prior to NA’s diagnosis.

She had been a medical assistant in 2018. She trained as a young advocate for living beyond breast cancer. In 2019, she became an advocate for the Susan G. Coleman, North Carolina triangle. And in 2020, she became an angel advocate for the tiger Lily foundation. 

Welcome Christine and Nunny. Throughout the month of August here at our MBC life podcast, we are focusing on the many issues of brain metastases for women and men with metastatic breast cancer.

Some key facts to remember brain met or brain metastases are secondary brain tumors. They occur when cancer cells spread from their original site to the brain, they occur within 10 to 30% of adults with cancer and metastatic breast cancer has the second highest incident of brain Mets among all malignancies.

It is something those of us living with MBC cannot ignore. There are variations of risk for brain Mets depending on your breast cancer subtype. But before we dig into the issues around brain Mets and living with MBC, I wanted to ask each of you a little bit about yourself. So could you each tell us a little bit about what you were doing before your diagnosis, your diagnosis story, and your current status, your family, and so on?

[00:03:42] Christine Hodgdon: I can go first, Nunny unless you wanna go first. So my, uh, my whole world of cancer started, um, actually a long time ago. In 2009, my father was diagnosed with a rare type of, um, sarcoma and he passed away about three months from his diagnosis. It was very fast. And, um, he was diagnosed metastatic from the beginning.

And about six years later, I myself was diagnosed metastatic from the very beginning, um, a Denovo metastatic diagnosis, stage four. And, um, I had been working as a conservation biologist, um, traveling a lot, living a very full life. I, you know, I, I had a lot of hobbies. I, I ran half marathon. I was a very healthy person, vegetarian and just all around, very active, very happy person.

And so when my diagnosis came in, um, 2015, I, um, I was actually ignored at first, which happens a lot with young women. Um, you know, they said you have no breast cancer in your family and you are, um, you’re young and you’re healthy. So it’s probably nothing. But I had two very visible lumps, um, in my breast and finally got, um, a scan that showed that indeed I did have breast cancer.

And then we had to do all the, the tests that go along with a diagnosis, which revealed that I had, um, a metastatic lesion in my lung. So my breast cancer had spread to my lung. And, um, it was very limited metastatic disease, what we call oligo metastatic. Um, and I started my chemo and targeted treatments and hormone therapy, um, right away and after about four months of, of chemo and Herceptin and Projeta was, um, Diagnosed with no evidence of disease.

And, um, since then I’ve just been continuing with my treatments. I still have a, a chest. I go every three weeks for my infusions and I’m still on my hormone therapy and, um, doing really well. But, um, yeah, not without its side effects. I’m very grateful for where I am. I’m very grateful to be N E D, which is sometimes really hard to achieve, but, um, you know, it does come at a cost.

So, um, but yeah, that’s a little bit about my, my story. 

[00:06:03] Nunny Reece: Okay. Well, for me, um, before cancer, you know, I was very active. Um, I worked as a certified medical assistant for over 14 years and, um, I’m married, um, to my husband for 20 years and I have three boys. And I’m sorry, are you still able to hear. Okay. Okay.

I just wanna make sure I heard some click on my end. Um, but like I said, I have three boys and I just, I was living up active life and my dad, um, same thing with, with, um, Christina, my dad passed away from stage four, colon cancer. So I kind of had a, like, you know, little background as far as, um, seeing patients with cancer and my mom, she passed away from early onset Alzheimer.

And, um, I’m so sorry, you guys. I’m having something going on on my end. Hold on just a minute. Okay. There . Okay. And, um, so I first had a mammogram in 2015. That’s when I felt a lump, um, myself, I went to get it checked out and of course, um, I was told that it was benign. I have very deep express. Now that time I didn’t really understood, um, the breast cancer world.

Um, I just went by, you know, if it runs in your family, it is usually when you older. Um, I just kind of went based off that. And like I said, they, I went by based off what someone else said it was benign. And, um, didn’t realize the education behind the fact, you know, with having very dense breasts. So moving along two years later, um, I felt another lump put in my arm.

And, you know, sometime when women shave, they think it’s one number CS, and that’s what I’m thinking of. No big deal. And, but I was still having like, um, a lot of other, um, pain back pain and, uh, I was having discoloration of the skin. It was just, things was happening back to back. So when I went to a physician, I was actually diagnosed with.

Um, they told me majority of the tests that came back, it was lupus. And, um, I was like, okay. I was like that doesn’t run in my family either, but they started me on medication plaque. I believe the name was, I’m not sure if I’m maybe to say the name, apologize if I wasn’t supposed to, but, um, but that’s the medication they started me on and I was still having symptoms.

So when I went back to, um, for a follow up, she asked me, you know, did the symptoms get better? And I said, no, they actually gotten a lot worse. They started to do additional images and come to find out when they did the images. Um, they went on and get a mammogram as well. Well, they also did a ultrasound and after the ultrasound, you know, they told me it was gonna call me back.

I was on my way to work. Haven’t got to work yet before I got the phone call. So I kind of knew right then and there, by being in the medical field that this wasn’t gonna be a, a pleasant phone call. So they indeed told me that I was, um, That it was cancer. And they sent me, uh, a name of a surgeon and wanted me to go see the surgeon.

Well, when I got there, the surgeon came to the office and said, Ms. Re after doing additional images, um, we’re not gonna be able to do the surgery because you were already at stage four. And I was remember sitting in there with my husband and we just look, and it was like the first question that we asked, because this is all, you know of, like I said, was my dad having cancer and got to stage four?

The first thing I thought of was Steph. So my husband was like, you know, is she gonna die? And she was like, well, you know, there’s, there’s treatment out there for her. And we go ahead and get her started on that. So that’s kind of how I started my journey, my experience.

[00:09:53] Lisa Laudico: Well, and it, I it’s, whenever I hear that, and it’s a similar story to my own because I was also oligo Denovo metastatic. Right. And I have dense breast too. And so I also had that appointment all lined up with the surgeon and then was told, no, that’s not gonna be your line of treatment for now. And I, and so whenever I hear, I have to stop myself, whenever I hear stories like that, it brings it all back.

Right. It’s so staggering that when you’re Denovo metastatic, there’s like a, uh, there’s no easing into the, the breast cancer community. And it’s just, uh, like you’ve been hit over the head and it’s so, uh, I think it’s. It’s a trauma. It’s a, it’s a profound trauma, even more, it’s not, there’s no equivalent like equivalency.

Like it’s more than this or that trauma. It is a trauma full stop. And so whenever I hear stories, like your, both of you have described, it kind of just still, uh, hits me in the stomach. 

[00:10:59] Christine Hodgdon: It does for me too, just listening to Nunny’s words. I’m like, oh my gosh, I’m just remembering being in that room. And, and for me, the doctor said, yeah, you, you know, you have breast cancer.

It was like very, very, whatever. This is like run of the mill. And then for me, it was a long time before I, it took about a couple weeks before I actually got the stage four diagnosis, but I felt the same way, just like totally thrown in the deepest end of the poll. And it was like, good luck. You’re on your own.

so yeah, your words money have like brought me back to that place. And we were both diagnosed in 2015 and we both lost our dads to cancer. That’s very interesting. 

[00:11:38] Lisa Laudico: How did that for both of you, uh, how did that diagnosis of your, uh, I mean, the, the situation with your parents and losing, losing your parents so closely AF uh, before you were diagnosed with breast cancer, how does that, how did that impact your diagnosis?

Nunny do you wanna go first? And then Christine

[00:12:05] Nunny Reece: now, for me, it was, you know, my, my dad, one thing about my dad and I guess, you know, all men is, are like this. He didn’t allow us to see a whole lot. So he tried to keep as much as he could away from us. And I would sometimes have to, you know, like put the doctor on the phone, let me talk to him, or know, when is your appointment?

So I can just show up and, you know, cuz he’ll try to keep things from us. So, but I would see some of the things that he go through and then it was like, wow, now that I’m going through the same thing, like I had to get a, um, procedure called sty. My dad had to, you know, go through the same thing and the pain that he was having, um, because the cancer had spread like all over and just watching him and then watching myself, having to go through the same thing.

It was like, wow, I have no idea that this would become my life. Um, I won’t say, I don’t wanna say good thing. You know, I was able to watch him, but having to watch him and how strong he was and how he, you know, spoke to the physicians and, um, how he was a advocate for hisself. It kinda made me watch the things that he did and also transfer to things that I do now.

Um, because like you said, at the beginning, it was almost like I was hit over the head with this diagnosis and I was kinda lost because it was like, okay, I know nothing about this. It was like, I was just throwing into this. Um, I just know the basic, where am I gonna start? What physician I’m gonna see, who gonna take care of me?

I mean, had all these questions that came about, but my dad was a very strong man. And, um, and that’s

[00:13:50] Christine Hodgdon: no worries. Um, so my experience was very similar to Nunny’s where, um, you know, my father was very strong. He, he didn’t wanna talk about, um, you know, we never actually talked about him dying. We never talked about his cancer being metastatic. We just. Talk about it. We tried to stay positive and happy and optimistic the whole time, which, um, was good in bad.

It’s good because it kind of helped his quality of life. Like we weren’t, you know, having these like really sad conversations, but privately my brothers and I were like devastated and it was like, it was very difficult to, um, kinda hide that from my dad. And my dad was like, what I was, he was, I was very close to him, so I would tell him everything.

So it kind of felt like this big secret between us and my mom said the same thing. She said it was the first secret they ever had in their marriage was that he was going to die. And so, um, for me, I learned a lot being a caregiver. Uh, I learned that, you know, I used to push my dad. Like, I’d be like, okay, you have to walk today.

You know, we’re gonna get up. We’re gonna. We’re gonna walk, you know, and my brother was very good at saying, I think he needs a break. I think we need to slow down. And, and, um, you know, what I learned was that, and my brother really helped me with this and he’s, you know, he’s very logical and I’m very emotional, but he was able to tell me at the end, um, we have to stop.

We’re doing, we’re doing unnecessary procedures right now. We are doing this for us. It’s selfish and it’s not for him. And we have to think about him. And that experience like losing my father. It was a gift in a, in a way because I got to take care of him. And, and I got to learn how to be an advocate.

That’s like where I cut my teeth. Being an advocate is like standing up for him in the hospitals. But. You know, for, for me, once I became metastatic, then I was like, oh, it’s really annoying when people tell you what to do. And it’s very frustrating that people think they know what’s best for you. And, and so I kind of got a taste of my own medicine and I, and I had to really learn and channel my father and remember that, okay, this is my life.

It’s happening to me. And I am kind of the center right now and, and everybody else needs to take their problems outside the circle. They talk about that circle theory. And I, and I learned that with dad and then I learned it with myself, but it was, um, yeah, a very heroin time to, to, to watch my father, such a strong person, just like basically deteriorate right before my very eyes.

And it was very, very difficult and I don’t think I’ll ever be over that loss, but he taught me a great deal. And I am like, none. I feel like I’m very strong and, um, positive and, and optimistic because of him. He helped me through that.

[00:16:37] Lisa Laudico: Uh, those are both your fathers sound like amazing people. And I’m so sorry for your losses. Um, you know, um, N you’ve you’ve said, I, I think you said earlier that, you know, other, other black women, um, know very little about the disease and it’s certainly, you know, it’s partly due to lack of representation up until about a nanosecond ago, perhaps, and that still needs to change.

Uh, however, um, what made you like, what, what was the lead up with your, with getting in demanding brain scans, given, given your background, and, and can you tell us a little bit about that process?

[00:17:21] Nunny Reece: Well, actually, you know, now that you mentioned that for me, Even just starting when I started to advocate, um, I didn’t see a lot of young women look like myself. I didn’t see a lot of African American women. Um, I, I felt like I didn’t have anyone to relate to at the time. And what really struck me was when I told a lady that I was, um, that I had breast cancer, she looked at me and she was like, I didn’t think black women could get breast cancer.

Cuz that’s what I was told. And then I, I asked her, I said, why did you think that? And um, she was like, well. I’d never seen them on TV magazines and they just, you know, was not seen. And that bothered me because it’s like, you know, it was the truth. And I would say that’s unacceptable. I, I really couldn’t.

It was just so unacceptable where I stay at in North Carolina, the resources just wasn’t there. You know, we didn’t have conferences, we didn’t have any type of literature. When you go into a physician facility about count stage four cancer, breast cancer. Even when you go to the radiologist, you don’t see any of that.

And that was one of, one of my, one of my questions that I asked them, you know, as a radiologist department, how come you guys don’t have anything on stage four metastatic breast cancer. I understand it’s a scary thing to talk about. And a lot of people look at it as, you know, the end of. But, you know, some of us who’s going through it, we don’t look at it like that.

You know, we don’t look at it as it’s the end of life for us. We try to remain positive and strong and you know, this treatment don’t work. We try another treatment. So I felt like it was my responsibility. Um, especially being an African American, um, female and actually being in medical field to kind of get that conversation going.

So that way the next young lady would not feel like I felt, um, when I was first diagnosed lucky for me, I, I had a physician that kind of took me in front of her w and kind of allowed me to, um, speak to someone physician. Like some of her colleagues, everybody don’t have that opportunity, you know, especially if you coming from a, a, a low income part of the, the, um, the county or the state.

You don’t have access to computers and you don’t have access to, um, going to the doctor because you may not have the medical for it. So, and I’m very blessed that I have all of that. Um, but it was just unacceptable for me to hear someone say that, you know, especially when we Don at a high rate, you know, it, it, it was so heartbreaking to hear that from another, um, black female and it was unacceptable.

[00:20:00] Lisa Laudico: Yeah. Well, and I’m, it is unacceptable full stop. And I, I actually think that some of the work that I know Christine and yourself have been involved with, and we talk a lot about it in some other podcasts, which we are, um, really. Glad to be in, um, amplifying on this podcast, but there’s so much work to be done, honey.

And . You’re so right. And it’s really about those community cancer centers that not the national research cancer centers, but really the ones, the cancer centers that treat the majority of breast cancer patients. And that’s where we’re really seeing a lot of this disparity come to play and. So thank you for all your advocacy, because it is, um, making a difference, certainly by having your voice and your image actually help drive the message home, that breast cancer’s happening to everyone.

And it’s not okay that it it’s happening to black women with a higher rate of mortality versus, um, a comparison with white women. It’s all very unacceptable, but it does, um, take the leadership and, and, um, and voice of people like yourself. So for me to you, thank you so much for, for all that you’re doing.

And I know it’s making a difference. I know some days it’s harder than others, but I do think it’s making a difference slowly but surely. That’s what we can hope for. Yeah. Um, from a few years ago, really, and talking about changes in systems, right. Um, you know, the oncology community, uh, excluded any clinical.

Involvement for say immunotherapy and controlling brain metastases, but also it, they also started excluding people who had any ongoing issues or evidence in the past of brain Mets from clinical trials that could actually benefit them. And, and all of this, we, you know, those of us in the metastatic breast cancer community, it’s like, well, that doesn’t make sense.

But, um, having that change occur has been a long time coming. So, Christine, what are you most concerned about right now? Uh, when you look at the current state of brain Mets research and, and metastatic breast cancer patients,

[00:22:16] Christine Hodgdon: Well, um, if I had to just sum it up the lack of research, um, and this goes from starting at the basic science preclinical level, all the way to, uh, the actual treatments that get approved for breast cancer patients. Um, we are lacking so much research and I lost two dear friends to breast cancer, uh, with brain metastases.

And they both did not die from their brain metastases. They died because they didn’t qualify for trials. So their brain Mets were actually being managed, um, with the treatments that they were on, but because they had progression elsewhere in the body. They were, they were removed from the trial, but they weren’t allowed to participate in any other trials simply because they had brain metastases.

So I’m not the first person to notice this there’s been work done on this, um, friends of cancer research and FDA actually wrote, uh, recommendations for how to broaden the eligibility for patients, patients with brain metastases. So there is now more acceptance, you know, for, for including patients. But a lot of times what I see is patients with stable brain metastases, so which can actually be quite difficult to achieve.

So again, it’s kind of like, uh, you know, you wanna get the best of the best and, and the truth is we really wanna be helping people who actually have active, progressive brain Mets and, um, with the approval of tib, which is now to chia, um, which is manufactured by, uh, Seattle genetic. We now have the first ever approved drug for breast cancer, brain metastasis patients.

And that’s, I can’t, I can’t, I can’t emphasize that enough, that that is huge. And, and with that approval, um, we saw an opportunity to really make the genetics kind of like our model and, and to say, look, they did it. They include patients with brain metastases. Um, they include patients without brain metastases.

They also included patients that were either active in progressing or stable. And then they also have recently opened the trial for the, the, the even more, uh, difficult disease of let and deal disease, which ha it’s a little bit more rare, but, um, it does happen and it has, and it has very, um, very bad prognosis and high mortality rates.

And so even that alone, I’ve learned that. The brain and the leptomeninges are actually totally separate. And so they’re really different. And, uh, we often just treat LMD as if it were brain met. So even at the preclinical stage, we don’t really have models, good models that replicate not only breast cancer, brain metastasis, but breast cancer leptomeningeal disease.

So it kind of starts early. That’s where the research is lacking and you move through the clinical trials and now we’re excluding patients. So, so now we’re not studying we’re, we’re not, not only do we have no drugs, we now are not studying patients with even where there might be a drug that actually has, has an impact in the brain.

And then we move to, when you get to like an FDA approval, they really can’t approve something for brain metastases, unless you actually study brain metastases. So, um, to tib, that’s why it’s the first one. There are other drugs that work in the brain. We have neratinib and, um, Lapatinib, and we even see it with TDM one Kadcyla.

But it’s not being studied in trials, so they can’t FDA can’t make this indication for brain bed. So for me, the lack of research, the lack of inclusion is, is really driving the problem. I think people are aware of it, but even at the oncology level, I know experienced oncologists that will not scan a patient who might be triple negative, BRCA positive, and have migraines.

And they still will not scan their brains. And, um, it’s very frustrating because I’m like, we know that triple negative and her two positive, like these breast cancers tend to spread to the brain. So, um, why are we not studying it? And what I’ve heard from some of the experts is that they kind of just don’t wanna deal with it because they feel like the brain that.

They just don’t have a lot of options and they just sort of see those two separate things. And, um, unfortunately that’s not true. So, so we have a lot of work to do. We, I’m very grateful to many for sharing her story and raising awareness about this because, um, I, myself do not have brain metastases. I just really feel strongly that this community is underserved, they’re vulnerable.

And, you know, with a disproportionate treatment response and limited treatment options, these should be the patient. We are focused on the most. These are the patients that we should be helping.

[00:26:58] Nunny Reece: And I like to say as well too. Why Christina? Uh, why Cine mentioned that for me, you know, I had to pretty much beg to get an MRI done of my brain. I knew I was having symptoms and I knew it was different and it wasn’t like, oh, it’s the, it’s the allergies, you know, this season’s changing. I’m like, no, I know my body.

And something’s definitely, you know, different I’m, I’m feeling dizzy. I’m throwing up a lot for what reason and for me to have to be, to have an MRI done. Um, and luckily I did because, um, I didn’t like the results, but it did show that I had brain meds, but for me to have to bed for that, you know, that that should never happen if I understood.

If, if, if I go to my physician and I say, you know, Hey, um, this is what I’m experiencing. It’s very different for me. Don’t tell me, you know, oh, it is the seasonal changes because. Now you put me behind, uh, in treatment that I could have had. And a lot of women is starting to experience that as well. And that just makes me so upset because I could have had treatment like three months ago, but because you didn’t listen to me now, I’m having to I’m in this category where I kind of, I could have surpassed that.

[00:28:14] Lisa Laudico: So Nunny I’m glad that you were able to advocate obviously for yourself, but what would you tell people who are listening to you now? What would you tell them as your top three or four tips when their oncologist is saying no? And what did they do and how did you get over that hump by using your . Voice?

But I I’d love to hear your top three or four tips of how to get that to happen for other people. 

[00:28:41] Nunny Reece: Well, for one, I always tell you ladies to. To look at your report, read your report and . Understand the terminology. Once you understand the terminology, um, then you can ask questions like, you know, um, for yourself.

Well, maybe it is like when I was diagnosed in 2015, if I looked at my report today, I would have said, well, let me, um, let’s get a ultrasound, just be on the safe side. Last, get to biopsy, just to be on the safe side. Even if my insurance did not wanna cover it, I would have paid for it myself because I look at it as, you know, saving my own life.

And if you feel that something is different, stuff is not right. You have to stand your ground. You have to say, look, this is my body. This is what I want. This is what I want to happen. And your physician should actually do that for you. You have to trust your physician. And that’s one of the things that with African American women, you know, that’s where the trust kind of decline that because of the fact that, you know, when we go to our physician and they’re so nonchalant about certain situations, We don’t have that trust that you put in our care first.

I should not have to stand there and demand to have an MRI done if I’m having multiple different symptoms. So I have to tell you ladies, to stand your ground is your body. You have the right to ask for whatever you want. Now, your insurance may not cover it. If it does not cover, it is worth taking your money and actually getting whatever test done that you need to have done.

Even if you have to make payment plans. And that’s what I tell young ladies, because it, it is really scary to having a goal, get a test done, and then it comes back showing that you have mets in your, in your brain. And then it’s like, okay, well, what else am I gonna miss? What else do I have to stay on my ground for?

Yeah, I, I just, you just have to, you have to be a strong advocate and you just have to stay on your ground and you have to understand the, the terminology, because if you don’t stand understand the terminology you gonna be lost, you have to have, you know, and even if you don’t trust your physician, There are so many women now in the breast cancer world, you know, that websites you could go onto and people that will actually talk to you and, you know, and, and tell you kind of what they went through, like myself and like myself, I’ll share mine.

What is it? My email and everything. So that way, if someone wanna reach out to me, please do, because we’re in this together. 

Oh yeah. So true. Thank you, Nu that is really generous. We will absolutely add your email to our episode notes on our website@ournbclife.org. Let’s take a short break. 

[00:31:10] Eileen from TalkMets: I’m Eileen and I’m a volunteer with the talk Mets helpline.

And I have MBC if you have been diagnosed with metastatic breast cancer, we are here for you. Call the talk Mets helpline at 1 8 4 4. Ask share that’s 1 8 4 4 2 7 5 7 4 2 7. 

[00:31:27] Lisa Laudico: And we’re back with Nunny Reese and Christine Hodgdon. So my apologies, but our internet glitch briefly and yeah, welcome to 2020. And so Christine, I think you were briefly cut off.

[00:31:40] Christine Hodgdon: I talk a lot. It’s totally fine to cut me off. I, I think I was going to say so when I, I totally agree with everything Nunny said and, um, you know, knowing your body, seeing your ground and the other piece of advice I always offer people is get a second opinion. If you have a doctor that’s not listening to you and not taking your concerns seriously, they’re not the right doctor for you, fire them and get another one.

And it’s really not that hard. A lot of people, I mean, I do second opinions for people all the time. Literally I just need an insurance card and I can. Take it from there, I need a little bit of history, maybe the date of birth, but like I have done it for so many people. And I think people have this idea that first of all, they’re offending their current oncologist, which is just not true.

It’s how it’s done. There’s a lot of collaboration among oncologists. So, um, if they’re offended again, they’re probably not the right doctor for you because for me, I like collaboration. I wanna get, I got six opinions when I got diagnosed. I got six opinions because I had a lot of weird, you know, I had a few things that just weren’t.

I kept wanting to get consensus and every time I would go to new opinion, it would be another. So I waited until the six opinion. I finally got consensus on what, what to do with my treatment options. And I learned that for my dad, that, you know, we never got him a second opinion and we regretted it and the truth was waiting until things are bad and you are maybe bedridden or really, really sick.

It’s just not, it’s not as good as doing it when you have, you know, when you have all your ducks in a row, you can just. Call that doctor get the opinion, you know, it’s, it’s very easy, but it’s, it’s, um, it’s a little bit of work upfront, but I just tell people it’s totally worth it, you know, in the end. So, um, when Nu was talking about.

Begging for a brain scan. This is another issue. this is another problem that, um, you know, there is, there are two clinical trials now studying whether, you know, we should be scanning. Um, I think it only is studying her two positive and triple negative metastatic patients. Um, but you know, one of the things we argue for in, um, this initiative that we’ve launched through the metastatic breast cancer Alliance is the inclusion of HR, positive patients, nones HR positive.

In fact, half of the group, more than half of the group is comprised of patients, um, that either have brain metastases or Leptomeningeal disease. And most of them have hormone receptor positive disease that we know that’s the more common breast cancer type, but to exclude it from preclinical, um, you know, models and things like that.

And to exclude HR positive patients from these trials, it’s just not right. You know, it’s just not right. So, um, Yeah, I think that I just wanted to build off of what Nannie said about, you know, making sure that you get the right, get the right doctor in front of you and with brain scans. That’s very tricky because like I said, I think there’s actually a lack of expertise and knowledge on the oncology side.

That there’s a little bit of a fear of what do I do with this. And so, um, there are breast cancer doctors that specialize in brain metastases. So, you know, you can find all this information. We have a, um, there’s a Facebook social media group that we can, we can also list, um, for people to know. And, and it includes, I have a whole spreadsheet of trials specific to brain Mets, drugs that are, have activity in the brain and then doctors as well.

[00:34:52] Lisa Laudico: Well, that would be fantastic if you want us to link to your particular website, we’ll do that. Um, the thing about second opinions that I also wanted to just say, I also have had a second opinion and I would encourage people if they’re looking for places to. Source that second opinion consider a research center, a cancer Institute, um, that, and we will link that as well.

In our episode notes that it will provide a different, um, a different perspective. And right now a lot of oncologists are doing telehealth appointments and really what they do need for that second opinion is yes, a cell, an examination of you would be great. But right now during the pandemic, what we’re seeing is all these telehealth appointments.

And really, they need to just see and read through your records as they, as they are today. And what I find, uh, just as, uh, Christine said, is that my second opinion doctor is a phone call away when I have progression. And so that becomes another part of my team and yes, my oncologist would be fired. She wasn’t open to this collaboration.

And I think to just say to, to, to, to stress a point that’s been made a million times just like they’re not constructing the preclinical trial research in brain mats. They’re not really constructing the trials that are currently in the pipeline properly. Likewise, there’s a lot of unknowns that even are very intelligent, really dedicated oncologists.

They just don’t know. So all of us are in this land of unknown and we are the experts of our own bodies and we are the ones that can lead our team. And we’re the CEOs of our team as opposed to passive, Hey, I’m the patient? I don’t know anything. And it turns out that sometimes our oncologist. Don’t have the whole story either.

And it’s the good oncologists that are actually open to collaboration because their goal is to get the best outcome for you, the patient, the CEO of your body, and also to be able to find out there’s no way every oncologist can know every single thing, because it’s a moving target. Metastatic breast cancer is incredibly complex.

It’s why we haven’t cracked the code yet. Um, so I can’t even E I I’m just repeating what both of you have been so articulate about already, but I just can’t emphasize it enough. So, thank you. The next thing I wanted to talk to you about is, is N can you talk a little bit about your, the various treatments that are targeting the brain metastases and what that’s been like for you?

[00:37:35] Nunny Reece: Um, as, as far so far, I, like I said, I had a whole brain radiation. Um, that was very difficult for me. I was already having some symptoms of, you know, feeling dizzy, headaches, um, vomiting a lot. So once I finished 10 rounds of the whole brain radiation, The, um, the side effects that I was, um, experiencing actually decreased a little bit, but then they start to pick back up after a couple weeks, um, because of the fact that I was diagnosed with the COVID, um, virus, I was not able to get the MRI when I was supposed to.

So I’m actually gonna go this week to have the MRI done, to kind of see if the whole brain radiation, if it helped, if it, um, did any strength or anything like that. So, um, and also I was in the process of getting ready to change treatment plans as well, because right now I’m getting ready to start my eighth treatment plan and that’s a lot, um, I had only been stable, I think, for about six months on one medication.

And that was it for me. So basically it was like one treatment to see if it was gonna work another treatment, see if it was gonna work and just so on until where I’m at now. , um, we haven’t really decided which treatment I was gonna start yet because we kind of think in between, um, two different treatments.

And once I speak to my physician, once we get the MRI, um, back, we can kind of make a decision on that. But, um, as far as treatment so far, it’s just been the whole brain radiation. 

[00:39:13] Lisa Laudico: Okay. All right. Well, let’s hope that this MRI is gonna give you some more answers to get you to the next place. So that’s really important.

So, Christine, can you tell us a little bit about the metastatic breast cancer alliances work on the breast cancer brain Mets initiative? 

[00:39:30] Christine Hodgdon: Yes, I would love to tell you about this. It’s the first time we’re talking about it publicly. So this actually started last year. I went to a society for neuro-oncology meeting and I think it was a inaugural meeting on brain metastases.

This is a New York city and it kind of convened all the experts in the field. And that, you know, also includes people who work on, um, oncologists who work on melanoma, lung cancer. Um, kidney is another cancer where it tends to spread to the brain. So it was really neat to see all these people in one room and giving talks.

And I was the only advocate there. It was very small, but I was the only one there. And, um, I learned so much, I wrote a 10 page report because. So much that I learned, but like I said, at the beginning, what I really learned was that there was just so much, we still don’t know. And, um, and I, as I mentioned, I have several friends that have bring metastases and, and, you know, the more I, I, I kept talking to different people trying to figure out, like, is there a role here for advocates?

Like, what can we do? Um, and what I kept hearing was that, you know, I be, I basically kept hearing people pass the buck when I would say, why aren’t you including bringing those patients? Oh, well, um, that’s, that’s pharma. And then pharma would say, oh, well, that’s the FDA. Oh, well, that’s the research institution.

You know, I, I couldn’t ever get anybody to like, be accountable for, for not making these changes. And, um, I decided that I wanted to create, um, something that, you know, where advocates can have us say, advocates are very powerful. And, um, sometimes we don’t even realize our power of sharing our story and how we can actually influence change.

And, you know, if we look at the HIV aids crisis, we saw that advocates really. Basically got their treatments from advocating for themselves. So, um, you know, I wanted to see what can we, what can we do here? So I, I had written this report and then I submitted a proposal to the metastatic breast cancer Alliance.

I’m a member of, and, um, I’m also on the research task force. And so we submitted it through the task force. And, um, along the way, as I was writing this report in this proposal, I realized like I need some input from, from doctors. Um, you know, I’m just a patient, like I don’t have any medical background, so I’d love some input from people who actually work in the field.

And we now have about, I think like 12 people on our advisory board and some of the top names in and bring metastases. And that includes neurosurgeons, neuro oncologist. Researchers breast cancer, oncologists, radiation, oncologists. So we kind of have a nice mix of people. And what we did was we just outlined and looking at it right now because I’m always editing it, but we just outlined, um, five goals that we had.

And, um, the goals are basically to increase basic clinical, uh, preclinical research increase the number of, um, trials that we have, uh, testing a variety of interventions. So not just looking at, um, you know, drugs, but looking at surgical techniques and radiation techniques and things like that. Um, let me just see what else.

So we also have in here about reducing that crazy restrictive eligibility and actually creating cohorts that would show, you know, it basically can have a cohort of patients that don’t have brain Mets, cohorts of patients with stable brain Mets, another with, uh, progressive brain Mets and then another Leptomeningeal disease..

So lepto is kind of. Hold it into this, even though we make, we have a whole section on lepto and how it’s, it’s totally different, um, different cancer altogether, um, of course spreading from the breast, but just where this location is, is quite different. And then we also, um, talk about improving, um, the trial endpoint.

That’s another criticism that we hear a lot is that with these brain metastases trials, the, um, trial endpoints maybe of just overall survival are not really good enough. So for example, 

[00:43:23] Lisa Laudico: so let’s talk, let’s make sure for, for people who may not know, uh, clinical trial language endpoint, so let’s explain what endpoints are for clinical trials.

Cuz I think all of us need to learn more about what clinical trials are all about and the nomenclature around it. Thanks. Yeah. 

[00:43:42] Christine Hodgdon: And I dunno if I’ll give the best explanation, but it’s essentially what you are measuring to determine the efficacy of your treatment. So, um, you know, we often see progression free survival or overall survival.

And, you know, for example, in a phase three trial, you’re looking at, um, a new therapy and you’re comparing it to a standard of care therapy. And so you wanna see which patients go longer without having progression. So if you have the experimental therapy, you’re, you’re living, you know, 10 months longer without, you know, without any treatment, then that therapy means the PFS is higher and that’s, that’s good.

And you can look at overall survival, too. The problem with overall survival is you literally have to wait until the people in the trial die. That’s what you have to wait for to see. So that’s looking at overall survival, these are good endpoints, like we would wanna know. And we saw that with Tucatinib and improved PFS and OS, um, with, you know, compared to patients who just had, I think it was just trastuzumab and Keine so that’s great.

That was, these are really good numbers, but when none was talking about whole brain radiation, You know, one of these things, oftentimes when you don’t scan a patient and they develop brain metastases, it’s often, um, the treatment that you need later is often more invasive. So, you know, a lot of people say, Ugh, they would just love gamma knife.

And that would be easier than whole brain radiation. Now, maybe overall survival is the same. Maybe you do a trial and you look head to head doing whole brain versus, um, you know, whole brain versus gamma knife with somebody whose BR whose brain metastases were caught a little bit earlier. And maybe the overall survival would be the same.

But what we’re trying to say is that’s not the only measure people wanna live a good quality of life. We need to be measuring quality of life. And most of the patients I’ve spoken to had gamma knife would much prefer that Overhold brain. So, you know, we have to just. Incorporate, um, you know, they’re called patient reported outcomes as well.

We need to make sure that we’re actually using clinically meaningful endpoints, but also endpoints that measure a patient’s quality of life. Because if you’re just measuring overall survival, I can tell you, I just dropped a drug from my regimen. Um, I’ve been on Herceptin and Projeta for five years, Progeta has all kinds of side effects, causes really bad itching.

I had a really bad attack last night. I can’t work. I can’t focus. I can’t sleep. It’s like being in pain. And for me, even though I know that my overall survival is much longer when I have Prota Progeta and my regimen, I couldn’t take it. I couldn’t take it. And for me, it was worth getting rid of it so that I could get my quality of life back.

And I am not recommending anybody do that. I’m just showing, trying to highlight the importance of quality of life that people, yes, they wanna live longer, but they also wanna live better. So we don’t want a long life full of pain and side effects. Um, and this is something that in the brain metastasis community, they have this problem big time, because the only interventions we have right now are surgery and radiation.

And with the recent Tucatinib drug being approved, that’s like the first targeted treatment that we have. Um, but yeah, it’s, it’s very difficult to treat brain metastases and then as well, monitor and image and all these other things. So , so I, I will just keep talking about all the problems and, um, we are trying to offer solutions and part of the initiative is to work we’re strategizing and working with, um, pharmaceutical companies to talk about the goals that we have and that we want future trials to incorporate our goals, as well as the endpoints that I just mentioned.

Um, and then we’re gonna keep going. We’re gonna, we’re gonna work with FDA. We’re gonna work with others to try to make sure that we kind of build a coalition. That’s geared and, and very focused on improving the lives of patients, living with brain Mets or leptin and deal disease.

[00:47:37] Lisa Laudico: Okay. Let’s take another short break here in my talk with Christine Hodgdon and Nunny Reece I’m Lisa, and this is our MBC life podcast, and we’ll be right back.

[00:47:51] Shante Drakeford: Thank you for listening to our MBC life. I’m Shante one of the hosts. Now it’s your turn to share your voice. The last Monday of every month is the just gotta share listener Roundup, which is dedicated to your voice, the voices and opinions of people who are living with MBC today. 

Please send us what you just gotta share in a voice memo. It can be whatever’s on your mind or a reflection of what you have heard on our MBC life podcast. Send to. OurMBClife@sharecancersupport.org or check our website for info, our MBC life.org. Thank you.

[00:48:36] Lisa Laudico: And we’re back. So Nunny how long have you had brain metastases? 

[00:48:46] Nunny Reece: I found out it was in October and then it was October and I had the whole remediation. It was, um, December. And I honestly say, I mean, as for me, I really have not seen much of a difference because like you said, Christine, you know, with, with me HR positive, I I’m excluded, you know, so I’m not in that.

And you know, my quality of life now that you mentioned about the quality of life, that’s something that’s really important. Like I sit. Today and like right now, and I may sound like I’m okay. But the dizziness that I’m feeling inside my head right now is like out of this world, but you know, I have to push through that, you know, especially if I’m trying to tell my story and advocate because of the fact that I want other people, um, to know, you know, what I go through and you have to kind of like, just push through it.

But, um, it, we have people ask us, you know, are you okay? And sometimes, you know, my words get messed up and. I wanna say something, but it’ll come out that way. All the things that you, you have to think about as well, but, and it’s a struggle, the quality of life. It is a struggle. It’s very different from when I didn’t have brain met to now, because my short term, my short term memory is, um, it’s a little off, so it’s, it’s a struggle.

It, it really is. 

[00:50:06] Christine Hodgdon: I agree with Nunny I don’t think I’ve seen much movement in this cuz it’s it’s early and, and, um, you know, Tucatinib and S were kind of the first to, to really, to take this on. What I do see movement on is the value that people and the medical community are placing on advocates. I do think that advocacy patient advocacy continues to grow and get stronger.

And there’s a lot of really fantastic. Brilliant advocates out there that, you know, are really making changes at the policy level at research level, you know, it’s so I, I, I think I’m seeing more respect now for advocacy. I don’t think we’re seen as fluff anymore. You know, we’re seen as like actual participants who have a, you know, who have a very important voice and should be heard. 

[00:50:51] Lisa Laudico: Nunny do you feel like your, your, your experience as an advocate mirrors, what Christine’s just discussing or just mentioning? 

[00:50:59] Nunny Reece: Oh yeah. Yeah. Mo most definitely. Yeah. I, I agree with her in, in a lot of ways. And like I said, for me, I just, I just wanna live and, and be here for my family. You know, my youngest son, he’s 10 years old and I cannot imagine not being here.

And he’s, you know, he he’s not have, he don’t have a mom. And, um, which is one of the reasons why I push so hard because I want to be here for my son. and although it’s a difficult life to live and you know, like Christine said, it may be a medication. She may not feel that’s worth taking because of side effects and you just want stop.

It’s not that you’re giving up, but sometimes the side effects is just so difficult. It it’s, it is actually on worse than the cancer itself. So, um, yeah, I very much agree with it. And like I said, it, it is really hard. You just wanna live a good life. And, um, we want people to the pharmaceutical company, the, the doctors, the FDA just take you seriously because of the fact that you want to live.

[00:51:58] Lisa Laudico: Yeah. I think that’s a drop the mic moment. It’s pretty much what we’re all trying to do. You know, all of this, I have other questions, but I, I will make sure that in our episode notes, we will have links to your work with the, um, the, the Alliance and also with your storm rider’s work, which I think is also super will make sure that’s linked in there.

But I think I’d like to switch our, our conversation to mental health now. And that is, you know, as advocates, you know, you’re busy doing your advocate work while you’re also trying to maintain your, your own health and treatment issues. And then on top of it, last I checked we’re in a pandemic. There’s tons of issues that have been going on forever with racial injustice in this country.

It just goes on and on and on right now. Super tough time for a lot of people. But I think that those of us in the metastatic breast cancer community, it’s pretty heavy. So I wanna ask both of you and take a moment to think about it. How do you take care of your mental health in these days? 

[00:53:03] Christine Hodgdon: It’s hard. it is not easy.

I can say I actually got a therapist, which I love. She’s been very helpful and, you know, I don’t think people should shy away from, from getting the care that they need. I mean, we, we focus a lot on our physical health, but our mental health is just. So important. And you know, they even show that when you improve quality of life, this can actually improve overall survival in some cases.

So it actually can save your life if you can actually take care of yourself. And one of the things that we, what we did, and I especially struggle in the winter time, I’m, I’m definitely a summer girl and I like. Warm weather. And I like the long days and in the wintertime, it’s just awful. It’s just dark all the time and it’s cold and I hate the cold.

So one of the things we did is I actually created a list of things that just make me happy and I have it on my refrigerator. And, you know, the goal is not to get everything on that list. The goal is to do one thing on that list. So, you know, for me, if I’ve been working all day and I haven’t taken a break and I see my list and I haven’t done anything, if I light a candle that counts that’s on my list.

And in other days, I’ll do like more than half of the list. I’ll go for a walk or I’ll exercise. I do yoga every morning, or I try to do yoga every morning. And so I just have a list of things that make me feel good and that actually are good for me. And then I just try to do at least one a day that’s. 

[00:54:25] Lisa Laudico: Oh, that’s a great, those are great tips.

What about, what about you Nunny how how’s it going on that front? 

[00:54:30] Nunny Reece: Yeah, for me about like Christine, you know, I have a list too. I call it my live love life list and, you know, there’s things that I want to accomplish on that list. One of the first things I wanted to do was to renew my rate vows with my husband and we actually achieved that it was February cuz it was 20 years for us.

So that was really beautiful. But as far as my mental health, one of the things for me is, you know, some people don’t talk about it because they shy away from it or maybe embarrassed to talk about it. But my relationship with God, you know, that’s how I’m able to get through. I praise and worship. Listen to my worship.

Music is kind of, um, zone zoned. Just kind of get my little conference zone and that’s really what, what does it for me? You know, everybody had their own way, but I’m reading my Bible, going to church, hanging with my family, my friends. That’s kind of, I love to laugh. I love things. That’s funny. I love to dance.

I have all kind of top videos out there. clothes and he understands a lot, you know what I’m going through. So, um, sometimes he come in the room. He’ll bring his little game and like, mom, you know, we could, I can come in here and play with you in here. And of course, since the COVID now the virus, you know, I had to kind of stay away for him.

So, so really my future, just a better quality of life, uh, to be on a treatment where I’m not having to deal with a lot of side effects, I’m spending less time having to go into the hospital and just having a good relationship with my physician. You know, the physician that I’m with now, I trust. And like, um, Christine said a while back, you know, you, I fired a couple physicians as well, because you have to be able to trust them.

You have to be able to, to know that they’re all about your life. And she liked to say, okay, this is team Kela. So, you know, if things like that lets me know that she’s really for me and that she also want me to have a good quality of life. 

[00:56:20] Lisa Laudico: And is there one thing that you’d love to . Change right now? One thing in the world right now, what, in your, in your advocacy or anywhere other aspect of your life?

[00:56:30] Nunny Reece: Well, you know, one thing I would like to change and one thing I will share with, um, one of my top videos, uh, I’m in an interracial relationship, my husband’s Caucasian and, you know, sometimes people put negative scenes, you know, on the post and, um, the things that we are going through now, as far as, um, you know, Black life matters.

You know, of course I’m African American and, and I stand behind that, but I just wish at this point, you know, people could, can just get along and just love on each other. You know, we have enough going on as it is with, you know, healthcare and, um, people dying and, um, people being sick families alone in the hospital who can’t, can’t go up there because of the fact they won’t allow any visitors. And that’s really hard. So as, as a nation, we just need to come together and just love each other. Oh, 

[00:57:20] Lisa Laudico: thank you. Thank you for that. Thank you. I, I couldn’t agree more. So, Christine, you’re up? What what’s going on in the next few months? What’s up on your plate and what goals do you have? 

[00:57:32] Christine Hodgdon: Oh, I have way too many goals.

I’m like I have too many things on my plate. Um, I’m actually really trying hard to establish a work life balance because I work too much. And, uh, we were talking about this before, Lisa, that when you love what you do. Sometimes it’s hard to put boundaries on, you know, the time you spend doing the things you love.

So I have become a workaholic and, you know, I don’t love that. I love what I do, but I do need time for myself. So I’ll be very literal about your, what is coming up. I’m actually going on vacation next week. And I’m very excited about the real vacation. I took like a mini vacation a couple weeks ago, but I was like still working a little bit.

This is like on a lake, the finger lakes and upstate New York. It’s gonna be with my brothers, with my family. And, you know, we, we usually do this every year. We used to go to Canada every year. My dad had been going since he was eight years old. It’s like a family tradition. And we’ve, since it kind of lost its magic after my dad died.

So we’re kind of starting we’re in this phase of like trying to start new traditions in my family. And so I’m very excited. Hang with my brothers and I’m gonna be kayaking and swimming. And I love being in the water. That’s kind of my element. So I’m, I’m very much looking forward to that. And, you know, starting September, my life’s gonna pick up again, all the conferences while most of ’em are gonna be virtual.

It’s still a lot, you know, there’s still a lot to, to start in September. So I’m kind of trying to get all my ducks in a row before September so that I can, you know, so I can be fully focused on work in the fall. 

[00:59:00] Lisa Laudico: oh, that’s wonderful. And a final question, uh, before I just gotta share what was the one thing that you’d wanna change in the world right now?

It’s like another one is like, well, where do I start? There’s so much to do, but anyway, 

[00:59:15] Christine Hodgdon: I think, yeah, this is a really good question. I think I would just love to have a, a vaccine or a treatment for this virus. It’s just ruining so many people’s lives. I mean, it it’s just devastating. So metastatic patients that are already dealing with, with a awful.

People who are dealing with a metastatic diagnosis who are an ongoing treatment. It is just awful. It’s already hard. And then you put a pandemic on top of cancer and it’s even worse. On the other side though, we, I think everybody’s getting a little taste of what it feels like to live with cancer. I think that everybody feels very scared and they don’t know what their future holds and, and, um, they’re afraid this like evil little, you know, microscopic thing that might kill them.

That’s what we live with every day. So it’s been interesting watching people’s reactions. To how scary it is to live with the virus. But I do wish that we, you know, I just feel so much for our healthcare professionals and these people that are working on the front lines and exposing themselves daily and for 14 hours a day, you know, I just, I just really hope that we can find something soon so that we can get back to a normal 

[01:00:21] Lisa Laudico: yeah, amen to that.

Well, both of you have been a delight. It’s been great to meet you Nunny for the first time and to get to know you and Christine to meet you as well. I’ve known of both of you for a long time. And so it is truly an honor, actually, this is the best part of this new gig that I’ve got going is I get to meet people like you both.

So thank you so much. And so at the end of our interview with Christine and Nonnie, our senior producer, Anne Woodward had this to say, 

[01:00:56] Anne Woodward: I do have one quick question, Christine, if you’re up for it, You said chronic, and then you stopped yourself and said, people get mad at me. Could you, could you just speak to that for a couple minutes?

[01:01:04] Christine Hodgdon: Yeah. I would love to explain that. So, you know, right now metastatic breast cancer is an incurable disease and you know, it is it’s treatable, but it’s not, it’s not cured. And so, you know, I, I totally understand where metastatic patients are coming from when, when they, when they get upset, when they hear chronic, because chronic would imply that you’re gonna live a normal life, but, and you’re gonna live a normal life span.

You’re just dealing with this, with this health issue like diabetes. And it’s obviously not that it’s completely different from that. But I do what, what I struggle is that I do feel like I’m stable because I’ve literally been on the same treatment for over five years. I’ve never had progression. I barely had progression.

We almost didn’t catch my stage four cancer because my lesion was so small. So sometimes I feel like I’m like cheating it in the stage four world, but you know, I, I still am. I still have report. I still have to get my infusion. So what I always tell people is that chronic would imply that I live a normal lifespan.

So if I was diagnosed at 34, which I was, I was diagnosed at 34, um, let’s say I get 10 years, which is a long time for metastatic breast cancer patient. If I got 10 years, I diet 44. That’s still not a, like a, a reasonable lifespan. We wanna live till 70, 80, 90, a hundred. So I caught myself because. It might be considered chronic for somebody like me who had these very certain criteria, but it’s not fair.

I’m very much an anomaly and it’s not fair to characterize the whole, the whole metastatic experience as chronic. But for me it is, I mean, and we know, you know, there’s ESA, shepherd has been living with her two positive metastatic disease for like 20 years. I mean, that’s chronic, but, but she’s very rare.

It’s a very rare circumstance that, that, that you get that. So, um, now it’s becoming better. The lifespan is increasing, especially with the, for two drugs, but also with the CDK inhibitors that’s expanding like, and those people are still, when I talked about overall survival, we’re still studying those people.

We still can’t give you an ethical number. Cause those people haven’t died yet, which is good.

[01:03:15] Lisa Laudico: and finally. We wanted to give you our listeners a little update on how Nunny is doing since her MRI and our interview. A few weeks ago, she’s been gathering extra opinions on what her next treatment plan should be and is hoping to have a decision in the next few weeks. She is following all the great advice she gave us here.

Get a second opinion. Do your research, discuss getting a new, a biopsy with your team. Tap into MBC resources in your community and around the country to get the right answer for yourself. We’ll be following up with money and we wish her well. This podcast was produced by me, Lisa Laudico along with our collaborative podcast team of Jersey baker, Victoria Goldberg, Sheila Malone, rainy Orka, Shante, Randall, and Ann Woodward.

Our executive producer is Christine Benjamin, senior director of patient services and education at share. Interning with us is Elena go and Angelica Elberta and Amy Eski special. Thanks to Beth Costello and rainy Tika who designed our logo and to the team at Cher, Jill golden, Carol Evans and Amanda Russell.

For their support, you can find more episodes of our MBC life, wherever you find your podcast. Be sure to subscribe and look for a new podcast every Monday.