[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring
[00:00:06] real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room
[00:00:16] This is Real Talk, a podcast conversation where we’re digging deep into breast cancer and the realities patients and survivors face every day. We’re talking openly and honestly about just how difficult breast cancer can be, from being diagnosed, to selecting the right treatment plan, to living day to day with metastatic breast cancer.
[00:00:34] Metastatic breast cancer cannot be cured, but it can be treated. Treatment focuses on disease management while maintaining the best possible quality of life. The unfortunate reality is that treatment will only work for so long, then another one is needed. Joining me today are two women that are living with metastatic breast cancer who are sharing their experiences living one treatment to the next.
[00:00:58] They are tireless advocates for research and the breakthroughs that will ensure their next treatment is available when they need it. They’re sharing how they live life to the fullest and manage their day-to-day care. Missy Von Lochren and Judy Greiman, it is my pleasure to welcome you to the show.
[00:01:15] Missy Van Lokeren: Thanks for having us.
[00:01:16] Judy Greiman: Thank you.
[00:01:17] Adam Walker: Yeah.
[00:01:19] Judy Greiman: I’m Judy Greiman. I was diagnosed in June of 2023 with metastatic breast cancer. It was de novo, which means I hadn’t had any early stage, and it was quite a surprise. I had only s- short of some lymph nodes, I had only one metastasis, which really meant… It’s called oligometastatic, which is when you have fewer than five.
[00:01:46] And it receives a somewhat different kind of treatment generally. And I am stable. Right now, I have not had progression, although I’ve had lots of treatment. And I’m on what’s technically my third line of treatment, but I didn’t fail my second line, so there’s some confusion there as to how we call it.
[00:02:11] We just changed the treatment. And so that’s my short version of how, when, and what I was diagnosed with. How about you, Missy?
[00:02:24] Missy Van Lokeren: Well, we have a very different experience, Judy. I was actually diagnosed with stage one breast cancer back in two thousand fourteen. I was forty-six years old, and it was just a lump in my breast.
[00:02:37] And we were very aggressive. We did a double mastectomy, and then six months later I had a hysterectomy, all for preventative. And I was on maintenance medication, tamoxifen anti-estrogen medicine, because it was estrogen positive breast cancer. So I was on that for four and a half years, and I really thought breast cancer was in my rear view mirror.
[00:03:01] I was living my life, and I had done some charity work for breast cancer research and this kind of thing. I did get really involved when I was first diagnosed, but then I backed off that a little and just started living my life again. And then four and a half years later I had a bit of shortness of breath on an airplane coming back from Hawaii for our 25th wedding anniversary, and honestly didn’t think much of it other than at the time I thought the plane was going down.
[00:03:25] I could not breathe, and my husband was sound asleep next to me, and everyone was acting like business as usual. I’m like, “Oh.” And then it went away maybe 30 seconds later. It felt like a lifetime, but… And I didn’t really think much of it until I went to my doctor’s office, and I mentioned it at the very end of an appointment, and she said, “Oh, Tamoxifen can cause blood clots in your lungs, so that’s probably what it is.
[00:03:49] No big deal. We’ll give you a blood thinner. You’ll be fine And so we got a PET scan. Actually, maybe it was a CAT scan back then, but anyway, and they found a, so the seven-centimeter tumor in my liver at that point. So that was out of the blue, and coincidentally, I had a, an MRI two years previous, and there was nothing there.
[00:04:10] And I had an MRI for a totally different reason. And so it was a pretty fast-growing tumor. But anyway, so I was back in the cancer world again, unfortunately, and had… And now you’re talking big time when it’s metastatic, that it’s a whole other ballgame, and it’s a much more intense situation.
[00:04:27] So I have been on… And so that was 2018 when I was diagnosed with metastatic breast cancer, and I have had many treatments. It’s funny that you say it’s hard to say which lu- I definitely have been on at least three. I think I’m on my fourth. I had very short runs on one drug that they did a PET scan, and it wasn’t working, and then another short run on another drug that caused a severe rash.
[00:04:55] So I think I’m officially on my fourth line of treatment, and I’m coming up on my PET scan. All the..
[00:05:02] Judy Greiman: Same.
[00:05:03] Missy Van Lokeren: Oh, you are too, this month?
[00:05:04] Judy Greiman: Yes.
[00:05:04] Missy Van Lokeren: That’s crazy. That’s crazy. So this timing is- Yeah … Interesting. So that’s coming up, and that’ll tell me a lot about whether this medication is working or not.
[00:05:14] I’ve been stable on it so far. I’m hoping that it’s better than stable. If it’s not, then I have to go to another treatment. If it… Well, if it’s progressed at all, I have to think about another treatment, and that’s scary because there’s not as many options right now for me. So that’s where I am right now.
[00:05:32] Judy Greiman: Right.
[00:05:32] Missy Van Lokeren: What are you on right now, Judy?
[00:05:34] Judy Greiman: I’m actually, since April, I’m on Lynparza or Olaparib, which is really focused on people who have the BRCA mutation, which is-
[00:05:46] Missy Van Lokeren: Oh, you have the
[00:05:47] BRCA
[00:05:47] mutation?
[00:05:48] Judy Greiman: Which was my other surprise in June of 2023 that surprise I had this. And I had a doctor at a major medical center say to me, “Oh, there’s no way you have the BRCA mutation because you and your sisters are all in your 60s, and none of you have had breast or ovarian cancer, and not possible.”
[00:06:13] And as I walked out of her office, I got a call from a genetic counselor saying, “You have the BRCA mutation.” So we I didn’t start on this medication. It’s highly toxic and can cause cancer if you’re on it for a period of time. So I was originally on a, a chemo, and then I was originally on Verzenio for two years, which was wonderful for me.
[00:06:41] And then y- basically three years into this, did something which is highly unusual, which is I had a double mastectomy then. Don’t usually– Surgeons don’t wanna do mastectomies generally on people who have metastatic cancer, and then did radiation, and then we shifted to this BRCA focus medication.
[00:07:04] So my first scan is also, it’s actually in the first week of September, and it’ll be the first one I have on this new medication, right? So and I think that I think that as we think about this conversation about metastatic cancer, right, I think that we’ve just illustrated for the world A, no cure, B forever treatment, the ups and downs of that treatment and the side effects and how it is essentially we can look great and actually sometimes feel great and live a big life, but it also is hanging over our heads, right?
[00:07:45] And I know that- As you said, both of us waiting for scans on and having switched to a new med is stressful.
[00:07:55] Missy Van Lokeren: Yeah.
[00:07:55] Judy Greiman: How do you… Yeah, how do you-
[00:07:57] Missy Van Lokeren: I actually heard somebody on a podcast say this, and it has stuck with me. It’s a cancer podcast I listen to occasionally about living with metastatic disease, and they said, “Living with metastatic disease is like having a gun pointed at your head.
[00:08:11] A loaded gun, and you just never know when it’s going to go off.” So that’s a dramatic way of saying it. It’s not like you’re going to die immediately, but it’s like you you have to live knowing that the next treatment may or may not work, and then you n- where that could lead would be horrible.
[00:08:29] And so I feel I really hope this medicine works, but then part of me is and I think there is a clinical trial I could do, but clinical trials which I’m all for clinical trials, but that could lead to all kinds of side effects, too, and I am, I’m already having some side effects on this medication where I’m, like one week out of the month, I am fatigued.
[00:08:52] Yeah. I don’t like to complain about it too much, but since that’s what we’re talking about, I’m just going to go there and just say it’s interesting that you have to organize your life in a way that I know on the fourth day after my… I get in- I’m on Enhertu right now, infusion.
[00:09:08] Judy Greiman: Okay.
[00:09:09] Missy Van Lokeren: So every three weeks I get-
[00:09:10] Judy Greiman: That’s a tough one.
[00:09:11] Yeah.
[00:09:11] Missy Van Lokeren: It’s a tough one, and it’s the hardest one I’ve been on. I was on Ibrance for six and a half years.
[00:09:17] Judy Greiman: Wow.
[00:09:17] Missy Van Lokeren: And I’ll tell you what, my life didn’t change much, and it was a joy and it was wonderful, and I, ugh, I look back on those days fondly. Like that was a really good treatment for me. Yeah. And then since then, it’s been a lot harder, but Enhertu is probably the hardest.
[00:09:32] But so the fourth, fifth, sixth day, I know I’m going to be lying on the couch, lying in bed and then gradually I’ll feel better and I’ll be able to do things, and I’ll feel great the week before the treatment.
[00:09:47] Judy Greiman: Right.
[00:09:48] Missy Van Lokeren: And then you’re like, ugh, you feel great, but then you know that treatment is so close, and it’s just something you have to do.
[00:09:53] It’s just a weird way of living that you force yourself to get this treatment that’s going to make you feel so bad because you wanna spend time with your family. You wanna… I don’t know if you have grandchildren. I have two grown children who are just married, and I’m hoping for grandchildren, and so I there’s a reason to stay living and to fight for this, but sometimes it’s really hard to- grapple with the fact that you just don’t feel like yourself, and-
[00:10:18] Judy Greiman: Like yourself.
[00:10:19] Yeah …
[00:10:19] Missy Van Lokeren: And you’ve– I just sometimes long for the days when I used to feel good all the time, and it’s it’s just a, such a simple thing that you see people who are healthy, they take g- given– and not that they take it for granted. That’s a horrible thing to say, but we just wish we could be like that again.
[00:10:37] That is the dream.
[00:10:39] Judy Greiman: Absolutely. And yeah, I think about the same thing, and I think that it’s interesting. People… Two things that you’ve said really resonate with me, which one is people always say, “But you look so good.” Well, sure, I’m doing okay. I’m managing. I’m walking every day.
[00:10:58] I move. I live a– I made a decision to really embrace life when I got this, which doesn’t mean it’s easy, and it doesn’t mean I’m not exhausted, and it doesn’t mean I don’t have side effects, and that I’m not managing them in a million different ways, right? And that I’m not worried about the next will I move to a next treatment?
[00:11:19] Will I have progression? Will I get to a place where there isn’t a next treatment? And I think that people are sort of have been… The good news is people have learned, okay check your breasts, get your mammograms, find it early. It’s curable. That’s not our situation. And I think the other thing that people say occasionally, which I actually never understand is the well, we could all be hit by a bus someday, but your bus doesn’t have your name on it with the headlights focused on you, and it’s on your street.
[00:11:54] Right. It’s coming right at you.
[00:11:56] Missy Van Lokeren: We see the bus every-
[00:11:56] Judy Greiman: Daily …
[00:11:57] Missy Van Lokeren: day of your life. We-
[00:11:58] Judy Greiman: Every day …
[00:11:58] Missy Van Lokeren: see that bus coming at us every day. That is-
[00:12:00] Judy Greiman: Every day …
[00:12:01] Missy Van Lokeren: exactly the explanation. You’re absolutely-
[00:12:03] Judy Greiman: Exactly. Exactly, yeah. So ah and- Yeah, that’s the bus thing.
[00:12:09] Missy Van Lokeren: Yeah …
[00:12:09] Judy Greiman: Can I travel, and will I see this event of my family?
[00:12:13] That’s just not in everybody’s realm, but it is in ours every day. Yeah, it is.
[00:12:19] Missy Van Lokeren: Yeah.
[00:12:21] No, I’m with you, and I I what you just said rings a bell with me in that people assume there’s a cure, and they’re like, “When is your treatment going to be over? You’re … You look so great, and I’m I’m sure you’re doing great.
[00:12:33] So when will you be done with your treatment?” And I’m like, “Never.” I remember trying to explain this to my mother, and it’s What do you mean never?” I’m like, “This is a disease that they don’t have a cure for. I will be on medicine till the rest of my life.” And it’s just so hard for people to get their heads around that.
[00:12:49] And then I think they do feel bad for you. You’re like they go, “Oh, well, I didn’t know that,” or, “I don’t…” I can’t… They can’t even understand it.
[00:12:57] Judy Greiman: They can’t grasp it, right.
[00:12:59] Missy Van Lokeren: Right. They can’t grasp it. You could say it a million times and they can’t grasp it. But I-
[00:13:03] Judy Greiman: Yeah …
[00:13:04] Missy Van Lokeren: I’m still hopeful.
[00:13:05] I still feel like there’s so many good medicines coming out, and I’m hoping the next one will give me more time, less side effects, something. It’s just, I that’s the hope- Yeah … that’s the dream. We… And that’s why you’re a patient advocate, right?
[00:13:20] Judy Greiman: Yes.
[00:13:21] Missy Van Lokeren: We get involved in research, right?
[00:13:23] Judy Greiman: Absolutely. I’m actually, right now, I’m on a, a d- there’s funding that goes to the Department of Defense for breast cancer research, and right this minute, I’m reading grants because I’m a patient representative on that. And you’re looking for what’s impact around curing metastatic disease.
[00:13:44] And I’ll tell you right now, the other thing that keeps me up at night in addition to how is my scan going to be, is with all of the cuts to research funding- the next cure, the I say all the time that my amazing friends in this community live discovery to discovery, that when they get to the end of the line, will there be another medication that works for them?
[00:14:15] And I worry when I hear universities didn’t bring in as many graduate students this year or post-grads to do research in this, and that maybe the thing that’s going to save my life when I have to get off this drug is in somebody’s head who now is going to go do something else because we’ve stopped so much research funding in this country.
[00:14:37] And I think that it’s just critically important that we continue as a nation to fund this research because… A- and metastatic research, right? We’re the ones who die. If you can solve this problem, then you can sort of solve breast cancer because you’ve got treatments for the others. And and I think that It’s just critically important for all of us to use our voice around supporting research funding.
[00:15:08] Yeah.
[00:15:09] Missy Van Lokeren: I couldn’t agree more. And…
[00:15:11] Judy Greiman: Yeah.
[00:15:11] Missy Van Lokeren: I’ve been involved in quite a few research projects with re- you know, who are trying to come up with… And honestly, I agree with you. We need more research. We need more money going to research. The, the cutting on the funding is very upsetting. But I will give you one example.
[00:15:30] Where I live in Carolin- I live in North Carolina UNC Lineberger Cancer Center was just given a $20 million anonymous donation for metastatic breast cancer research. Isn’t that amazing? Yeah. So things like that, it’s God, it’s out there. People do care. And honestly metastatic breast cancer, as you said, is the only breast cancer that kills.
[00:15:52] So many people with early onset breast cancer, they’re cured. They don’t get the metastatic diagnosis. But once it’s metastatic, it is a systemic problem in your body, and it is and it is a real pro- So I’ve worked with people who are working on antibody vaccines, which is a big new realm of research.
[00:16:14] Immunotherapy, of course, which may be my next stage, which would be the clinical trial I would go to, which would be immuno- because everyone’s trying immunotherapy, which I think is great to get the immune system to work to find cancer, because that’s the whole problem. I’ve heard a theory, I don’t know if you’ve heard this, that every person has cancer cells in their body, a little bit here and there.
[00:16:37] But most immu- most of the time the immune system will just take it away fix it little pieces. And that the ones of us that are unlucky enough, the cancer just got away from the immune system, was able to form a tumor, whatever. Yeah. Anyway, so immuno- immunotherapy makes sense.
[00:16:56] I think it’s still very complicated. The whole idea of getting your immune system to recognize the cancer but not- Fight other healthy organs.
[00:17:04] Judy Greiman: Not fight other things, right. Yeah.
[00:17:07] Missy Van Lokeren: It’s a- Okay … slippery slope, but that, that may be my next step. But I do think I’m trying to be hopeful even though you’re right, the funding has been canceled a lot and, but I do think the researchers out there are passionate, and a lot of them have personal reasons for being in the business.
[00:17:23] And-
[00:17:24] Judy Greiman: Yeah …
[00:17:24] Missy Van Lokeren: They have come a long way with understanding cancer. Have you ever thought, though, the more they find out, the more questions there are kind of sort of thing?
[00:17:32] Judy Greiman: I know. Yeah. kind of like such a complex-
[00:17:32] Missy Van Lokeren: Yeah … disease with all the different types you can get.
[00:17:39] Judy Greiman: All the different types, right.
[00:17:41] Yeah. I had no idea, I have to say. I knew about some mutations, but before I got this, I had no idea that there were so many different kinds of breast… It’s not breast cancer is this. It’s many different things. And each one has its own stuff, right? Its own things around it. Tri- triple negative, lobular.
[00:18:04] It’s just-
[00:18:05] Missy Van Lokeren: I have
[00:18:05] lobular … it’s
[00:18:07] very interesting.
[00:18:07] Judy Greiman: It’s- Actually. Do you? Okay.
[00:18:09] Missy Van Lokeren: Yeah. And it’s a very understudied cancer. I think they’re starting to put some funds into lobular breast cancer, because only 20% of the breast cancer patients get lobular. So I think-
[00:18:19] Judy Greiman: Right …
[00:18:20] Missy Van Lokeren: I get that it’s a smaller group, but they are starting…
[00:18:23] There is a group the LBCA, Lobular Breast Cancer Alliance, that has formed and is trying- Good … to get more people to do research on lobular breast cancer and- Good … put more funding into it. But there’s so many different strains and types of just breast cancer.
[00:18:40] Judy Greiman: Right.
[00:18:41] Missy Van Lokeren: Estrogen positive, like you were saying, triple negative you know- Yeah
[00:18:44] BRCA- All of it … you have.
[00:18:46] Judy Greiman: Yeah.
[00:18:47] Missy Van Lokeren: Yes. So it’s interesting. Do the, the BRCA g- Having the BRCA gene, did you have a lot in your family? Did you have a lot of breast cancer in your family?
[00:18:56] Judy Greiman: None.
[00:18:57] Missy Van Lokeren: None.
[00:18:57] Judy Greiman: But… None. Zero. But my mother died at, when she was 32 of melanoma. Wow. And my… So would she have had breast or ovarian?
[00:19:12] We don’t know. But my oncologist, when I first met her, said, ” I was interested in your case because of the melanoma, because melanoma can be associated with the BRCA mutation also.”
[00:19:24] Missy Van Lokeren: Really? I didn’t know that. Okay.
[00:19:26] Judy Greiman: I didn’t either. And so, and I had a hysterectomy for totally other reasons when I was ear- in my early 40s.
[00:19:35] Would I have had ovarian cancer, right? So, so-
[00:19:39] Interesting … lucky that I had that. So I had no idea. And I have sisters that so everybody got the genetic test. My sisters don’t have the mutation. My daughter does not, but my son does. And it’s actually almost worse for men because males with the BRCA mutation are subject to higher rates of prostate, pancreas breast, and melanoma.
[00:20:11] And so he is 35, and he w- he has a good doctor who’s overseeing it, but he’ll just be tested earlier than he would have, so whatever was going to be done at 40-
[00:20:27] Missy Van Lokeren: For prostate cancer or all the- answers?
[00:20:27] Judy Greiman: Yeah. Yeah. Yeah. And that felt horrible also. It was sort of an additional emotional kick, like, okay, not only do I have to manage all this, and obviously my family along with me, but I’ve p- obviously not my fault, but I’ve passed this on to my son.
[00:20:50] And th- very painful for me. Oh. Very painful. And one of the reasons that they decided to do the double mastectomy kind of- You know, on somebody with metastatic was that they were sure that because of the mutation, I might, I would get another breast cancer that might not be as amenable to the curative treatment that I was having.
[00:21:21] So it was what tipped it over the edge for the surgeon that I was talking to to do the surgery. My case was at the tumor board so many times that when I met the radiologist, he hugged me. I’d never met him and I looked at him and he said, “Oh my God, I’ve talked about your tumor for three years,” that’s crazy.
[00:21:44] Yeah, it was very funny. Because I have a doctor who has done a lot of research into oligometastatic, and she passionately believes in the notion of curative intent. And so she sort of wanted to do anything she could. And anyway but
[00:22:04] it was-
[00:22:05] Missy Van Lokeren: Yeah, I’ve never heard of-
[00:22:05] Judy Greiman: Yeah
[00:22:06] Missy Van Lokeren: people getting double mastectomies after a metastatic diagnosis.
[00:22:09] Judy Greiman: No. No. Yeah. The surgeon at first two and a half years ago was like, “Absolutely not. What are you, crazy? I I would never do that.” And then, We waited two years. My s- my oncologist really wanted this. Had me go meet with him again, and I expected him to say no again.
[00:22:32] I wasn’t sure what I felt about it, to be honest. And ultimately, he said, “Look you haven’t progra- had… You haven’t had progression. Very stable, worried about the BRCA.” And I will say they were sure that the original tumors were gone But when they did the the surgery, in every single original area, so breast and lymph, there were cancer cells.
[00:23:08] Missy Van Lokeren: Really?
[00:23:09] Judy Greiman: Yep. So it wasn’t- Well, okay … progression, but it was the original, and so that’s all gone now.
[00:23:17] But obviously it doesn’t… Somewhere in this body there are sleepers, Right … waiting to pop out, and so we hope that the meds that I’m taking will keep them quiet. Right.
[00:23:31] Missy Van Lokeren: And you have estrogen positive, is that your type of cancer? Yeah. HER2- Yes …
[00:23:36] Judy Greiman: negative? Yes.
[00:23:37] Missy Van Lokeren: Okay. Yeah. I have HER2 low. I don’t know if you’ve heard-
[00:23:42] Judy Greiman: Okay.
[00:23:43] Missy Van Lokeren: A little bit. So enhertu, which is what I’m on, it- Right … it is really suggested for people with HER2 positive cancer.
[00:23:52] Judy Greiman: Yeah.
[00:23:52] Missy Van Lokeren: But it’s been recently accepted, I guess, for HER2 low.
[00:23:59] So if I have a low amount of HER2, it could attack that protein- Okay … and it could keep it from progressing. So my chances of it working are not as high as if I had HER2 positive, highly positive cancer, but I have HER2 low, so we’ll see. It has worked- Yeah … on quite a few people. It’s been a really good drug for a lot of people as far as- Right
[00:24:19] some people have ended up NED, which I’m sure you know what NED is, no evidence- Yeah … of disease, which is the gold standard, right? So that’s my wish, but we’ll see. And as you and I both know, there is a real thing called scan-xiety.
[00:24:34] Judy Greiman: Yes. Yes.
[00:24:36] Missy Van Lokeren: And it’s like- Yeah … The day or two before, at least for me, there’s not a big chance of me sleeping or anything.
[00:24:43] I’m trying to meditate and think of good thoughts and healing thoughts, but it’s a real stressing time, for sure.
[00:24:53] Judy Greiman: It is. It’s interesting because I try also to just keep it in place. But I have to say, I have many very close friends now in this community, and this has been a rough summer for them.
[00:25:08] I have so many friends who’ve had pretty significant progression. I unfortunately had a friend who was a dear friend pass away last night. I just-
[00:25:18] Missy Van Lokeren: Oh, no.
[00:25:19] Judy Greiman: An hour before joining this, heard this, and she was as healthy as can be. I sat next to her two weeks ago at a luncheon. You’re kidding. So,
[00:25:27] Missy Van Lokeren: What happened?
[00:25:27] Do you know what happened?
[00:25:29] Judy Greiman: I think it was liver failure.
[00:25:31] Missy Van Lokeren: Oh.
[00:25:31] Judy Greiman: She said, ” I have a little bloat,” but she had been stable for seven years. And so it, to me it’s sort of remembering that- In any way this could turn, right? Live your life big. But also, it’s probably for me the first time where I’m really getting some skinxiety because s- it’s l- it’s just been the summer of progression for all these women, and I’m on a new medication.
[00:26:02] So I hope for both of us-
[00:26:05] Missy Van Lokeren: Me too. I’m hoping- We have great scans … the cancer goes away. Yeah.
[00:26:08] Judy Greiman: Great scans, yeah.
[00:26:10] Missy Van Lokeren: It’s a tricky time, but we’ll hope for the best. Absolutely. Good news would be fantastic, and then we can move forward, right?
[00:26:16] Judy Greiman: That’s right.
[00:26:17] Missy Van Lokeren: Yeah.
[00:26:17] Adam Walker: Ladies, thank you for sharing what it’s like living with metastatic breast cancer and living one treatment to the next.
[00:26:24] For someone that’s listening that’s unsure what it’s like to live one treatment to the next, what do you want them to know, and how can they make a difference?
[00:26:34] Missy Van Lokeren: The thing about living one treatment to the next is you should be present in the treatment you’re on, and just enjoy it. I hate to say enjoy, but figure out a way to be able to…
[00:26:48] with the side effects. There’s so many medications that you could take to deal with the side effects, and just hope for the best. And maybe I’m all about a little bit of meditation here and there, and just try and be hopeful with the medication you’re on. The next medication could be easier, or it could be harder, but it will be there for you.
[00:27:09] There’s a lot of medications, and you will have another line of therapy. And even if there’s nothing right now, by the time you have to move on, there will be some line of therapy. And even sometimes you can go back to a th- line of therapy that may have worked for a while. There’s a lot of ways the doctors can manipulate the medication so that you can use something that will stabilize your cancer.
[00:27:30] And the, the thing is to live in the present, and that is what cancer has taught me, just to enjoy my family. Enjoy if I go out to dinner, enjoy every bite. Enjoy a long walk with my dog like it’s the last walk I’ll take, and just live in the present and don’t worry so much about the next medication.
[00:27:51] It’ll be there, and you’ll figure it out when you need to figure it out, and try and stay in the present. That’s what I would say is my best advice.
[00:27:58] Judy Greiman: Yeah, and I would just add to that. I think that there are, as you go down the list of medications, there often are more and more side effects. They’re a little bit more toxic.
[00:28:08] They’re a little bit more difficult. And I think that people sometimes even forget palliative care does… is not hospice care. Palliative care is people who help you figure out ways to have better quality of life. Talking to your oncologist about some of the side effects, because if you’re taking a medication that just absolutely makes you unable to live that life, to appreciate that each day, then- That’s more difficult.
[00:28:40] And so I think it’s really important to try acupuncture, get outside and move. Like, when I was doing chemo, I told myself no matter how I felt, I had to walk at least a block. I had to just be outside and moving. And so I think it’s use all of the things available to you that you can to help with side effects.
[00:29:06] And I agree, live as much as you can in the present. And what can you do to help advocate for more research funding? Because I still, I passionately believe that there are cures out there not just medication to keep us stable or any- but there are cures out there in someone’s head, and that we need to continue to have research funds flowing to bring those to the forefront.
[00:29:42] Missy Van Lokeren: Yes, and I want to add on to that. I am a part of a group called PART, Patients and Researchers Together, and we advocate that patients donate tissue if at all possible. If they’re having a biopsy, if they’re having a surgery, donate tissue for research. Researchers are desperate to get real human tissue.
[00:30:00] It helps them move forward with research. And I also want to say, because I don’t want to sugarcoat, you’re right, th- that these treatments can be very difficult. I’m on a difficult one right now, and I think you need to give yourself a little grace. If you feel like staying in bed for the day, stay in bed for the day, and don’t beat yourself up horribly about not being able to do everything perfectly because this is not a perfect way to live, and you have to just give yourself grace to do the best you can every day, and that’s all you can do.
[00:30:32] Judy Greiman: Agree.
[00:30:33] Adam Walker: Ladies, thank you both for sharing your stories, for sharing your lives, and for just being open and authentic. We so appreciate what you’ve contributed to this community today and just thank you so much for joining us on the show.
[00:30:50] Thanks for listening to Real
[00:30:51] Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.komen.org, and for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog, adamjwalker.com