Marie Arsenault, Metastatic Patient, Talks About the Need for a Cure, Not Awareness

Jamie DePolo: Hello everyone. Welcome to this edition of the Breastcancer.org podcast. My name's Jamie DePolo. I'm the senior editor at Breastcancer.org, and for this podcast during Breast Cancer Awareness Month, I'm very delighted to introduce to you a good friend of mine, a personal friend. Her name is Marie Arsenault. She's a former music promoter and booking agent, and she was first diagnosed with stage II, estrogen-receptor-positive, HER2-negative breast cancer in September 2000, at the age of 36. Marie had a mastectomy with TRAM flap reconstruction, chemo, and radiation. In May 2007, she was diagnosed with metastatic disease. The breast cancer had returned to her liver and her bones. In 2011, the cancer spread to her bone marrow. Marie joins us today to talk about what it's like to have metastatic disease during Breast Cancer Awareness Month, and she's also excited to talk about her cats. Marie, thank you so much for joining us.

Marie Arsenault: Oh, thank you, Jamie. Thanks for asking me. I'm very honored that you would choose me.

Jamie DePolo: Oh. Well, it's great to talk to you, and for me, I can see you. I don't think our visitors are going to be able to see you. But tell me a little bit about, I know you've been going through, trying some different treatments right now for the metastatic disease in your bones. What treatments are you currently on?

Marie Arsenault: Well, this summer has been... this has been... May was 8 years since I was diagnosed with mets, so this summer's been pretty challenging. It's probably the -- I don't want to say the sickest I've been, because I don't necessarily feel sick -- but I have the most stuff going on that I've ever had at once. I've been lucky that my treatment has been pretty well controlled by all the different antihormonals and endocrine therapy. But I was on tamoxifen up until May, and it was actually holding things back by themselves, which was pretty good, but then I got sort of a pain in my knee, and there was... We did an X-ray, and there was bone met there, so we did just one, in June, we did one big, one session of radiation to it, and it was getting better. And then I started getting a headache, and we did an MRI on that and it turned out I had another bone met on the skull and it was in an area where it was pushing down on some nerves, one of them optical, so I wasn't able to really move my eye, and it was just causing pain. So I did 15 rounds for that, and then my knee was getting worse, so we just did another 10 rounds for my knee. When I got done at the end of August, I got done with the skull, then we did 10 rounds for the knee, so I'm done with that. But actually did all my scans on Friday, and it turns out my backache's from another bone lesion on my lower lumbar area, which I had treated a couple of years ago. It's in the same area, could be the same one. So Monday I'm getting radiation to that, but only one round.

I've never really had problems with bone mets. I have them, but they were small and went away. The chemo killed them, so this has been challenging just having my, just not being able to get around, not being mobile, is a first for me. And doing all of this, I still have to be on some drug to control the rest of the cancer systematically. And I was on, we're trying Ibrance, which is a new drug that was just FDA approved with a lot of great results, but my platelets are low and we just could not get my platelets up high enough for me to give Ibrance a really good try. I'd be on it for 2 weeks, and my platelets would drop down to 25.

Jamie DePolo: Oh wow.

Marie Arsenault: Yeah. It was getting really low, so... And then I had this CAT scan on last Friday, a week ago, last one I had was in June, and it was just a lot of things have changed that weren't even in there in June. So now it's just becoming, you know, it's... We have to treat it quickly and effectively, you know, you can't... All the different endocrine therapies, they always take longer to work, but I can't do that right now so we're going to do Abraxane starting Monday. I haven't been on an IV chemo in a while, but I did do this one once I don't remember having a lot of trouble with it. So that's basically what's going on now, which is actually more activity in the past, you know, less than 6 months than I've had 4 years in a row sometimes.

Jamie DePolo: Sure. Sure. Well, I wish you all the best with the Abraxane. I know that can be, it can be sometimes tough for people. Other people tolerate it better than others, so it sounds like you did in the past, so hopefully that will go well.

Marie Arsenault: Hoping, because the drugs I've been on, I've been able to tolerate. The Xeloda I was on, and that's a chemo, but it's oral, and I was on that for over 3 years with Faslodex and having trouble, so...

Jamie DePolo: Okay. Okay.

Marie Arsenault: But Femara this time isn't working at all, because I was on Femara with the Ibrance, it's hardly holding things back.

Jamie DePolo: Okay. Okay. You almost need a binder to keep track of everything.

Marie Arsenault: Oh, it's just a mess. I have spreadsheets and then every... Yeah, it's just a lot of information to try to go through and figure out, and then when you have multiple things going on it kind of becomes what's most important, what do I treat first.

Jamie DePolo: Right.

Marie Arsenault: You're always kind of wondering if you're doing the right thing. Tamoxifen was doing so well, so we kind of rode it as long as we could, but I can't help but thinking maybe if we got off it sooner, I could have got on Ibrance sooner and maybe this all wouldn't be happening, but then again, maybe it would, you know?

Jamie DePolo: Right. You can't, yeah. I know that tendency to second-guess yourself. It's very tempting, but it's... you never... You don't know.

Marie Arsenault: And the doctors don't always know either; until we try it, they don't know how it's going to work.

Jamie DePolo: Right. Right, right. Especially for new things.

Marie Arsenault: Yeah, and everyone, every patient reacts differently, so...

Jamie DePolo: Right.

Marie Arsenault: The drugs, so...

Jamie DePolo: It's, yeah, everybody has an individualized response. Now, I'm curious, when you were first diagnosed, did your doctor at that time talk to you about recurrence and a risk of recurrence?

Marie Arsenault: When I was originally treated in Nashville, and I moved here in 2003, I got a doctor at Siteman [Cancer Center] to, at the time, just to check in with once a year. So I knew that it could spread, and that was always my fear, in the back of my head, but the further out I got, you know, then they were saying, you know, 5 years, it's not likely to come back, 7 years, it's not likely to come back. Mine came back in 7 years. And then what I found out after it came back, doing research, trying to connect with other women who had it, it's not uncommon at all for it to come back 7 years later.

Jamie DePolo: In that time period.

Marie Arsenault: For some women it's come back 10 years later, 20 years later. So I think the thing I wasn't aware of is that once you have breast cancer, you're not really ever cured because if it comes back, you're right where... There is no cure so, you know, then we all become in the same boat. So, pet peeve of mine is when people come on, you know, TV or whatever and say they're cured, they're going to die of something else. They don't know.

Jamie DePolo: Right. Well, that's kind of a good in to Breast Cancer Awareness Month. Talk to me a little bit about what it's like to be someone with metastatic disease during Breast Cancer Awareness Month. Because you do see a lot of people sort of being very happy about being quote-unquote cured, and you know, pink power, and lots of pink things, and just what's your personal take on that?

Marie Arsenault: Well, I mean, it's always kind of confused me because I was in Florida visiting a friend a couple of years ago, and we were in the grocery store, and it was October, and there was this huge cake, Breast Cancer Awareness cake, with all the ribbons, and it was pink and all that. And so, we were sitting there, staring at it, standing there, looking at it, going, "What are we celebrating?" You know? Are we celebrating that, you know, somebody has breast cancer? Are we celebrating that they don't have it? Are we celebrating that they had it and they don't anymore? Are we celebrating that they've never had it? I don't know. I just look and I'm like... it doesn't make any sense to me.

I think there was a time when breast cancer really needed awareness, because it was still very taboo, lots of people wouldn't talk about it. And I think, you know, Komen, who was kind of initially behind this, and it's gone way beyond that now, you know. I think that was something that was needed, but I think everybody is aware of what breast cancer is now, and I think that the money doesn't need to go to awareness, the money needs to go to research, because we still don't have a cure. You know, Susan Komen died of metastatic breast cancer, so you know, if we're not... it isn't honoring her if we're not trying to find a cure, I don't know what we're doing because obviously, early detection helps your odds, but it doesn't necessarily change anything. You could be stage I, not even need a mastectomy or anything, and it still come back, and it does. And I'm not a pessimistic person, you know. I have hope, that's why we keep doing this, but I am pragmatic, and you have to know what the numbers are. You need knowledge to be able to fight this, and we need money for research.

Jamie DePolo: Definitely, and you mentioned some of the pink products, and this is just me, personally, sometimes I see things and to me they're pink and they don't make sense, like...

Marie Arsenault: They don't make sense. I mean, anybody...

Jamie DePolo: Like pink drill bits, or you know pink wine, when we know that alcohol consumption in excess can be a risk factor, so some of the things, I just don't get.

Marie Arsenault: No, I don't either. I mean anybody can put a pink ribbon on the package and say... and they don't say anything.

Jamie DePolo: Yeah.

Marie Arsenault: People just assume with a pink ribbon that means its going somewhere, and it may not be. In a lot of cases it doesn't. And when the money does go somewhere, it's not that much, and you really start adding it up.

Jamie DePolo: Yeah. Do you feel during Breast Cancer Awareness Month, do you feel part of it? Do you feel excluded? What do you feel during October?

Marie Arsenault: I don't feel part of it, and I never attempted to be part of it. It just... it's not... breast cancer isn't a happy thing and people think, they kind of make it this big celebratory thing, and I think it's great that they're raising money, but I don't know. I mean I've heard stories about women who, you know, at these big breast cancer runs, you get a colored ribbon for how many years you've survived, so if you're 5 years out you get one color ribbon. But there wasn't any color ribbon at the first for metastatic. So that turned off a lot of women -- though there is now, I don't know, I think they get purple now. And then when metastatic women wanted to speak at these rallies, they weren't invited to speak. They just wanted just positive stories, and it's, you know, the reality is, women are dying and that number hasn't really changed that much. We're definitely living longer, but we're still dying. So yeah, I just don't... Yeah, I just never really felt part of it. It almost seems like some kind of sorority or something. You know? Like, we all have breast cancer!

Jamie DePolo: Yeah. What would you tell people, I mean because, as you said, there is quite a bit of awareness about breast cancer right now, perhaps not about metastatic breast cancer. So if there were like two, three, four, whatever things, what would you want people to know about metastatic disease?

Marie Arsenault: Well, I would want them to know there isn't a cure, because I've actually heard people say, even when you're diagnosed initially, it's still, you have to go through surgery and chemo and, you know, it all happens so fast. And I've heard people say, "Oh, breast cancer, that's the easy cancer," or that's...they just think that it's... there's a cure. I think people think there's a cure.

Jamie DePolo: Or like it's a one and done. You have your treatments and that's it.

Marie Arsenault: And it's not like that at all. That's not the reality of it, and there's no cure. So I think that's the main thing I'd want people to know. I mean, living with it, you know is everybody has their own experiences, you know. I definitely think there's hope. Just in the 8 years that I've been diagnosed, there's been so many new treatments out. There is hope, and there's hope for a decent quality of life too, but -- I'm trying to think what else I'd want them to know. I guess it would depend on who it is. If it's someone who's just finding out they have breast cancer, there's different things I would tell them. If there's somebody who just has breast cancer, but not metastatic, I would probably not tell them a lot of things. You know, everybody has to get through the situation however they have to get through, and, you know, if you want to believe that it's never going to come back, that's your right. It might not. The odds are always that it won't, so odds are almost always in your favor, so... But I guess the main thing is just that we... You know, there isn't a cure, and we need a cure, and that means money. And so people could get rallied and put the emphasis on curing it rather than just being aware, I think that's a lot of money that could go to make some big changes. Because there's a lot of people, a lot of scientists out there doing work.

Jamie DePolo: What has helped you during your treatments, because obviously, there have been a lot of different ones and different side effects. I mean, I -- and this is sort of my personal knowledge, I'm pretty sure you have a pretty good support network, family, friends -- what else has helped you adapt to all the different treatments and side effects?

Marie Arsenault: I think... well, I have an amazing support system, and I'm lucky because not everybody does. John, my husband is fantastic. My mom, who lives in Massachusetts, comes out and will stay 2 or 3 weeks at a time. She's been out a lot this summer, really helping. And then, you know, friends, just anybody you know is out there thinking about you, that gives you just a little... it's just nice, because you do spend a lot of time by yourself when you're going to different treatments, you know. You can't be in crowds. Right now, it's mobility, so sometimes you feel like you're... I call myself the girl in the bubble. It's like, I'm in the bubble, in Arsenault-land. So, it's nice just having people reach out to you, even just via email or Facebook or whatever. I feel I'm still connected. I did have this wonderful support group here, which is really hard to get a metastatic support group. I've been in ones that were just any kind of cancer, but I had one that was all women, most of them were younger than me, but... There was a young women with breast cancer program at Siteman, mostly it's women on their initial diagnosis. But through that, we kind of started meeting, and we'd meet about once a month, maybe month and a half, and it was fantastic but everybody died. One other person, Minnie and I, are the only ones left. And I've learned so much from those women. My friend Stephanie was 10 years, she was diagnosed in her late 20s, and she lived 10 years with a really aggressive cancer. And I learned a lot from her. I learned a lot about being my own advocate, about doing your own research, about looking up for studies. She would change doctors all the time if she did not think they were doing what she needed them to do -- then she was out of there. I apologize for the hiccups, that's from the head radiation. Ever since then, I keep getting the hiccups.

Jamie DePolo: I guess there are worse side effects you could have, right?

Marie Arsenault: That's been a harmless one.

Jamie DePolo: So tell me a little bit about -- I know as you said you are a positive person, pragmatic but positive, and I know you still do volunteer work at a cat rescue. Does that help keep you up and in a good mood, and, you know, let you focus on something else outside of you?

Marie Arsenault: Just getting out of the house. I volunteer at the storefront one day a week from 11 to 5, 5:30, and just getting out of the house and just having somewhere, you know, I'm going to go every week. And I work with the same group of women who have been wonderful, too, and supportive. Yeah, I really look forward to it. It means a lot to me, and I haven't been able to go the last few weeks, excuse me, I was hoping that wouldn't happen...

Jamie DePolo:: That's okay, and I should tell folks who don't know, that Marie lives in St. Louis, so she volunteers at the Tenth Life Animal, excuse me, Tenth Life Cat Rescue, which is -- now that takes in homeless cats and then finds new homes for them, is that right?

Marie Arsenault: Yes. They get them from the streets and from other shelters, municipal shelters. Most of our cats are fostered out, we only have about maybe 15 cats in the storefront, excuse me, and all the rest of the cats are fostered. We've got a really good foster network. But things like that make me feel like I'm doing something because I've been on disability for 5 or 6 years now, and it's... I don't mind not working, at all, but you do... it's nice to feel useful, like I'm doing something to give back, you know? So, yeah.

Jamie DePolo: That's great. That's great. Is there anything else you want to talk about? I mean, that's pretty much all my questions. I want to thank you again, so much, for taking time out of your day to talk with us today, and wish you all the success starting on Monday with the Abraxane.

Marie Arsenault: Yeah. Thank you very much. I'm feeling good about it.

Jamie DePolo: Great. Again, we've been talking to Marie Arsenault, a good friend of mine, a metastatic breast cancer patient, and all-around great cat mom. Thanks again, Marie.

Marie Arsenault: Thank you.