Full CURE Educated Patient Breast Cancer Webinar


View our full first breast cancer webinar where an expert panel discusses topics highly relevant to patients, caregivers and advocates right now.

DR. HOPE RUGO: Wonderful, thank you so much, Kristie, and thanks to the organizers for making this event possible.Because I think it’s just such a nice thing to be able to talk to everybody live and answer your questions.And then, I’m so excited to be joined by Dawn Hershman, who has done a really, I think some of that practice changing work in supportive care and is continuing to do that work now.And Ricki Fairley, who is herself a breast cancer survivor.And I think I’ll let both my colleagues just say one sentence about themselves, if you can be quick, so we have plenty of time to talk.Dawn, do you want to start?

DR. DAWN HERSHAMN: Sure, well yeah, again, thank you so much for allowing me to be part of this webinars series, I look forward to some engaging questions.And yeah, I’m a breast oncologist, I focus on, as Dr. Rugo said, cancer care delivery and ways of improving access to the treatments that we know work so well.

DR. RUGO: Ricki?

MS. RICKI FAIRLEY: Hi, I’m Ricki Fairly and I am the CEO of Touch the Breast Cancer Alliance, and I’m sorry for the ringing in the background.And I’m a 9 year survivor of stage 3A, triple negative, and I know that God left me here to do this work and be an advocate for my breastie sisters, so I try to fight like a girl every day to help women get through not only triple negative breast cancer but all kinds of breast cancer.So thank you so much for having me here.

DR. RUGO: Thanks so much for joining us, Ricki.Ricki had shared a little bit about her initial diagnosis and she did have multiple positive nodes and got chemotherapy and then had a local recurrence and got chemotherapy again and remarkably has been cured of her cancer.So it’s really exciting to have you here and to share in the success of your treatment and experience with breast cancer.I’m a breast medical oncologist also and have focused on a number of different areas during my career, one being education, but another more recently, much more focused on supportive care and then novel agents for breast cancer.

But I think Dawn having made her career in this area, it is just really great to have her here.And today we’re going to focus on a number of different areas.So first we’re going to talk about triple negative breast cancer and current options for triple negative disease.And potentially Dawn, you could just briefly talk about what we see as the unmet needs for triple negative disease and our current treatment options.

DR. HERSHAMN: Yeah, Well, thank you.I think for so long we haven’t had targeted treatments for triple negative breast cancer.We’ve focused on giving a variety of different types of combination chemotherapy drugs, thinking that more chemotherapy must be better.But I think there have been quite a few really recent exciting changes to that paradigm that I’m sure we’ll be talking more about.We can now, for some patients with BRCA positive, triple negative breast cancer, have treatments targeted towards that.

We now are talking more about the subgroups that might respond to immunotherapy that have triple negative breast cancers.And, I think most recently, some novel types of what we call an antibody drug conjugates or smart drugs to figure out how to get certain agents directly to cancer cells that have shown a lot of promise for triple negative breast cancer.

DR. RUGO: That’s great.I mean, I think that this year we’ve seen approval of an antibody drug conjugate that showed improved survival, as you mentioned, and I think that’s really exciting because it’s taken so long to see that.We also saw some really controversial data with immunotherapy, which I think we still feel very comfortable with immunotherapy overall.But we understand that there may be differences based on the chemotherapy partner and unfortunately this still benefits, really, less than 50 % of our patients with triple negative disease.From the patient standpoint, Ricki, what do you see as the biggest unmet needs?

MS. FAIRLEY: Well, I think that, you know, clearly I think you guys are talking about Trodelvy and Tecentriq, which we are so happy to have and those are doing wonderful things.I’ve actually worked with both of them, both of their companies, for the past few years as they’ve gone through clinical trials and I’m so glad that they’re here.But, frankly, they are for metastatic triple negative cancer, which is great because that’s what you die of, right?But it would be lovely to have some kind of medical or some kind of therapy for earlier stage triple negative breast cancer, like what I had.So I had stage 3A and I did kind of standard of care for all breast cancers, but I still think we’re lacking something for early stage, triple negative and we’re definitely still lacking a drug to prevent recurrence.

You know, we are the only subtype of breast cancer that doesn’t have a recurrence drug like tamoxifen or something of that sort that you take for 5 years.And so we still don’t have that.You know, my drug is paddle boarding every day I live on the Chesapeake Bay, so we have to have something.So I still think there’s so much room for science.I also believe that black women get a different disease.And overall for breast cancer, and we’re not really, we don’t have enough clinical data with black physiology to understand the real impact on black women.So that, we need to do some work in that area too.

DR. RUGO: Really good point actually.I think somebody was just asking you that the other day, that do black women really get a different biology of disease?And I think sometimes, yes, but sometimes no.And it is really an interesting area that we need to understand a little bit better and I think we see that biology in women who are not black also.And so there’s just balances between and trying to understand how we are treating them is so important in education is really important.Because I think the toxicities of the treatments that we give are so different between different groups of individuals, regardless of whether it’s - I think people’s biology and metabolism of drugs are different and there do seem to be some racial divides there.They’re not again absolute, but it’s quite interesting.

We - one of the questions we have is about less harsh treatments going to be available in the near future.And you mentioned that we do need to have - we do need to have more treatment for early stage disease.And one of the things that happened for you was that you got treatment after your surgery and now we’re really pushing very hard to get people with triple negative disease, except for the tiniest cancers, get their treatment before surgery.And true for HER2 positive disease as well.Because that allows us to change treatment after surgery.With the idea like you had, we don’t have a tamoxifen, but maybe we could find another drug like the drug you referred to as Sacituzumab, Trodelvy, that we refer to as Sacituzumab, Saci for short.So, that or maybe immunotherapy in that setting.Dawn, any comments there?

DR. HERSHAMN: Yeah, I mean I thin, you know, you bring up a really good point because, as we’ve learned, it’s sort of finding the right drug for the right patient.And one of the real advantages of neoadjuvant therapy is that it allows us to see how a patient with early stage breast cancer responds to their treatment.Knowing so well that patients that have a great response do very well.And patients that don’t, it’s a good opportunity for us to figure out what else they might need.We’ve certainly learned that giving some types of chemotherapy pills to patients like Xeloda after they still have residual disease may in fact reduce that recurrence.

But it’s a good opportunity for us to figure out how to give less to people that are very responsive and don’t need as much and give more to patients that have A more complex cancers and might need a bit more.

DR. RUGO: Yeah this individualization or personalization of therapy is just so important and that’s what neoadjuvant therapy allows us to do.One of the questions I’ll just quickly answer was approval for a new drug for triple negative disease, and the drug we’ve been talking about, which Ricki noted is Trodelvy is the brand name is also called Sacituzumab Govitecan and it’s an antibody drug conjugate, which is currently approved by the FDA for treatment of patients who have received 2 lines of chemotherapy in the metastatic setting, but it’s been actively studied in combination with immunotherapy and also in the earlier stage setting, which I think is really important.

You know, we’re talking about this personalization also trying to reduce toxicities of therapy.I think that we’re - that’s a real steep hill to climb for patients with triple negative disease because we haven’t yet found that there is less toxic therapies, which do quite as well.But this is something we’re working on.One area - one question that came up is whether there is something new for patients who have triple negative disease that’s inflammatory?Inflammatory being a breast, that doesn’t - you don’t have to have tumor in skin, but a red, swollen breast, sometimes skin nodules that are found to be tumor where the tumor blocks the lymph flow in the breast itself and this diffuse kind of involvement of the breast has been a big challenge for us.Dawn do you want to briefly comment on that?

DR. HERSHAMN: Yeah, I mean, it’s always been a big concern that especially these cancers have a high risk of coming back locally and involving the skin after surgery.And so they can be extremely difficult to control.They often involve multiple different types of therapies, chemotherapy, radiation therapy and obviously surgery.But I do think that there are a lot of ongoing studies looking at the immune involved environment of these kinds of cancers to try to figure out how to capitalize off of whether or not there is infiltration of lymphocytes or immune cells into that area.And to really figure out what the best combinations of treatment are to sort of capitalize off of that inflammation.

DR. RUGO: Yeah, it’s interesting because you know of course inflammatory, breast cancer is inflammatory, but may - patients may have a muted immune response against their own cancer.And so know some of the areas that are being worked on is how to enhance that.But we have found - somebody asked whether patients with early stage breast cancer do better if they are given treatment before surgery versus after.And Ricki is a great example of the fact that if treatment works, it works regardless of whether you give it at before or after surgery.But one of the things that has come up with the immunotherapy studies in the neoadjuvant setting, the treatment before surgery, is that you may need the tumor to be there, to have neo - to have the immunotherapy work as well as it can.

But I don’t know that we’re ever going to answer that question.And I think people could do better if you knew what the response was and then you could give treatment afterwards for people who knew needed more or even before.Some of the initiatives are trying to change treatment even before, if you don’t have as good a response.So I think that this is an evolving area.Ricki, do you want to comment on that at all?

MS. FAIRLEY: Yeah, and part of it too, you know, I didn’t really have a choice 9 years ago.But part of it is you just want to get the cancer out of your body.As a patient, you know, the sort of - the thought of having surgery meant that they were going to go and cut something out and get rid of it.And that’s sort of the chemo sort of after the fact.But the fact that you could psychologically feel like something was being taken out with some - was meaningful, at least to me.And I think to others that I have talked to.Because when you are sort of waiting for the chemo to work you feel like crap on chemo and you only get scanned and whatever, once a month and you - - strength, but it’s still in your body and it’s still like, you know, you wonder what it’s doing there.

So, I think clearly the science, we should do what the science says and kind of fall to the research.But, there is something psychological about having that surgery where they cut you open and pull something out and hopefully it’s gone.Does that make sense?You know take some of the fear away.It’s not a fun experience at all - but.

DR. HERSHAMN: I think one of the other sides of that to pay attention to is that, you know, there is also something about knowing that the treatment is working.And that often when we were giving so much treatment after the fact people would say why am I doing this, the cancer is gone?Maybe I don’t even need to do it.And so somehow engaging so that you can see the cancer shrinking and, you know, the treatment is working, allows people to finish their treatment where they may not have.So it’s, there is a little bit of ying and yang to that.

MS. FAIRLEY: The chicken or the egg, right?

Oral Therapies

DR. RUGO:- - from both of you is really important and I think it sort of in some ways leads us to something we’ll talk about in a little bit, which is how we can more appropriately provide patient education in what is a very scary and critical time.Because I think that giving treatment before surgery, which I’m very passionate about, is it all about patient education.Yes, you want that cancer out and you are completely like freaked out about it.But the fact is that that doesn’t cure the cancer, as we know.And the second part of that is now, with what’s going on now, I have 2 patients in my clinic who had early stage triple negative disease, had surgery first, then they got their chemotherapy and they are just destroyed psychologically.They can’t live with the uncertainty of not knowing whether they should now take a year of Xeloda, like there wasn’t a Chinese study which has a lot of toxicity.

Whether they should take, they have BRCA mutations, take PARP inhibitors and people have recommended it without data.Again, toxicity.We don’t know what the long-term effects are.But they just can’t live in their skins because they feel like they’re 30 something and they don’t know what’s going to happen next year.And so I feel like there is real benefit to neoadjuvant therapy for that reason.But let’s move on and talk and we can keep talking about this as go along.

But we have some - there is, as you pointed out, you know, you’re getting all this IV therapy and coming in, Ricki, and it is tough for patients.We have a big problem with IV access since one arm - - and is not usable and we can really destroy veins by using the arms.But for some people, having a port is a really big issue, you have a scar and - one of my patients is a policewoman and she didn’t want a port, and what do you do?So having oral therapy.

MS. FAIRLEY: (interposing) Yeah here is my port - can you see my port?

DR. RUGO: Yeah, that’s a thing, you can’t get - that scar is there, it’s sort of like you are carrying it with you as a battle scar.

MS. FAIRLEY: It’s a battle scar.

DR. RUGO: So the question is the difference between, like, how do you sort of balance the oral and IV treatments and how important do you think it is to have more oral treatments for our patient’s, Dawn?

DR. HERSHAMN: Yeah, I mean, I think, you know, like at face value it seems like, oh, of course I would rather have an oral medication.But like I think everything when you start to dig down and you start to realize, oh, our system doesn’t do so well in terms of accommodating patients that are on medical, oral medications.I think the biggest issue is access.A lot of people have insurance plans that are very different for their medical problems than it is for their pharmacy plans.And so there can be tremendous variation in terms of out of pocket costs that, just for picking up the medicine for the first time, copayments, co-insurance so it can be a huge barrier for people.Some of these medications are 11, $15,000 a month.It’s a huge problem.

And then they’re complicated.You have to - some of them you take 2 weeks in a row, you take twice a day for 2 weeks, you have 1 week off, 2 weeks off.I mean some you take every day.And if you’re on multiple different medications, not just for your breast cancer but for other things, it can get very complicated very quickly.And then finally, as oncologists, we’re probably not great at dealing with drug-drug interactions all so well.And so some of the complexity of absorption from the stomach and when you can eat and when you can eat and what other medications you can take it’s a problem.And so they may not be working as well as they can, if we’re not aware of all of these issues.

DR. RUGO: Yeah that’s so important, and I think that the share of cost is a, I think, a crisis in our country, which I hope can be addressed.I just, it’s not well recognized and people have share shared cost from the $200 range to the $2,000 range a month and it’s really not affordable.So that’s a big issue with oral therapy.The other thing, and Ricki, maybe you could comment on this a little bit, is that you could - people tend to think of oral medications as being less toxic and having better, like you would have - like you don’t have to poke the vein.

But sometimes oral therapies actually involve unknown toxicities.One of our drugs we talked about, Xeloda, the metabolism can vary a lot.Other drugs that we have some new oral taxanes, they all cause GI or gut toxicity, nausea, diarrhea.And so you have to be able to take the pre medications every day.For example, if you’re taking these medications, you don’t want to be thrown up for the next 3 days and the effects can be long lasting.So how do you sort of balance that, Ricki?

MS. FAIRLEY: Well, you know, I didn’t have that choice, but I know a lot of breasties who are dealing with that right now.The cost thing is huge because it’s a different insurance model when you get, when you have an infusion versus going to CVS, so that’s an issue.But also there are a lot of issues and I have to say that my closest bond during my treatment was with my chemo nurse.Her name is Cheryl and I still call her all the time and talk to her, it’s been 9 years.

And on Nurses Day, I send her a present.And so there is something cathartic about going and sitting in that chair.And I would have a party every chemo I always had a gang of people with me and actually I had chemo 2 years in a row on the day before Christmas Eve, so my daughter’s a dancer, we performed the nutcracker in the chemo.

DR. RUGO: I love it.

MS. FAIRLEY: But, every day, I cooked, I brought them brownies, I brought them pound cake because they were my lifeline and I felt like I could ask them anything.I, became - I had a pretty intimate relationship with my chemo nurse and especially when they told me, okay, now you’re metastatic.She explained what that meant, but I didn’t even know what that meant.So better than my doctor.So, and there’s something cathartic though about going to this place, sitting in that chair, being tended to, having people around you, checking your blood pressure, checking your weight, whenever they’re doing around you, knowing that you are getting care.

Do you know what I mean?I think it’s more - it’s scarier when you’re at home by yourself.And one of my - one of my best breasties just started taking, taking Xeloda and taking it at home.And she’s like, she actually did a video of like okay, I have to put this bag, put this in the bag, where the gloves take this out here, drink the water.Like, it was like a process and it’s scary because you’re in control of your own destiny and we don’t know what we’re doing, we’re sick.

DR. RUGO: I think that for many people, the transportation, the parking and the fear of going to infusion is, it balances that.Like, I have patients who say very similar things to what you’re saying, like for example, we now have subcutaneous Herceptin and Pejeta the antibodies for HER2 positive disease.And some people say no, I want to come in every 3 weeks, so are the people I know, and they’re not worrying about toxicity, these are professional people who have been getting it for ages.So I think that - but there are still other people coming in is a nightmare, and so I think that it is a balance, the oral —

MS. FAIRLEY: (interposing) Yeah, but COVID, COVID adds a whole another layer of fear of going to the hospital.But I don’t know, I think you need.

DR. RUGO: In general for right now, I think the hospital is doing pretty good job in the outpatient setting of preventing transmission, inpatient is a little bit more complex.But I think that the oral therapies that you take may also have the complication of needing to do fasting, et cetera, and also there is an issue with adherence.I think we’ve all, as oncologists, found that patients have, you know, I want - you give hormone therapy and one of the biggest issues for us is hormone therapy.I mean, it seems a little less with chemo.But you give hormone therapy to a patient, but you actually don’t really know that they’re taking the pills.And Dawn, do you want to just comment on what we’ve learned a little bit about adherence?

DR. HERSHAMN: Sure.I mean I think it’s always, I think you always heard it in medical school, of people not finishing their antibiotic courses and things along those lines, TB not finishing the whole thing and it being nerve racking.But nobody, I don’t think people realize, like for cancer it is something that’s so immediately life threatening that there would be complexity to taking medication, even just single pills once a day.And, you know, both myself and others have shown that only about 50 % of women finished the full 5 years of therapy at the full amount, like taking it greater than 80 % of the time.

And now we’re seeing, even in the metastatic setting, people that are taking some of these medicines for 6, 7, 8 years, not just the hormone medicines but other medicines along with it, like Palbociclib plus all of their medicines for their heart disease, their diabetes and other things as well.And it can get very complex very quickly.And not taking your medicines, not wanting to tell your doctor you’re not taking your medicines, not remembering to take your medicines.It’s complicated and so - and people are often not seen every, you know, all the time to discuss these issues with their physicians.So I think it’s, I think we have to pay a lot of attention to how we make sure that people are getting the medicine they need.

Treatment Adherence

DR. RUGO: Ricki, what kinds of things from the patient perspective and advocacy, that people you’ve heard about really play a role in adherence to medications?And how can we work in some ways to try and improve that?You know, how do we improve our communication?As Dawn said, a lot of times, the patient doesn’t want to tell the physician that they aren’t taking the drug or that they missed it or they don’t know really what to do if they miss a couple of days.

MS. FAIRLEY: Yeah they don’t tell the physician they call me.They call me and say - you can’t imagine how many calls I get, and I don’t want to tell them, but you know so - so my daughter has a soccer game at 2 o’clock.I’m supposed to take my pill at noon, but I know it’s going to make nauseous, so do you think it’s okay if I wait till after the soccer game?And I’m like, no, take the pill.And I know that the - and I’m not a doctor, I can’t tell you that - but they cheat because they want to have their life and they know that taking this pill or taking this medicine is going to make them feel a certain way.Been there, done that, got the tee shirt.So they want to live their lives and - - so we give license to cheat because they want to do something or they have a time period that they want it to something.

And so they are going to cheat and they are going to try to figure out what they aren’t going to cheat and they’re going to try to figure out what works for them even though they’re petrified of dying because they’re metastatic or they’ve got cancer.But still, they still are going to try to figure out, okay, this really is sort of in my control and maybe I can put out that nausea and - - so I can go out to dinner with my husband, right?Or so I can - - or so I can hang out with my kids or whatever it is, or so I can go to work.And I know with a lot of black women, 77.3 % of black moms are single moms.So add cancer to that, add therapy to that, what’s she going to do?She going to prioritize her kids, so she’s going to give herself the meds based on what she has to do for her kid.So I hear that a lot

DR. RUGO:- - patient who has little kids and she keeps knocking off her on body device, the on pro that people use for growth factor.Today I - - again.So I think that that can be a really big issue.And I worry, I worry a little bit about these new oral taxanes and how people are going to manage them.It’s going to really require a lot of, a lot of education.One drug is given every 3 weeks but it’s given in combination with keeps, with Xeloda.And the other drug is given 3 days weekly and you need to fast both and after.So it’s just these are - but on the other hand, I think people would really like to come into the infusion center, to come in and see the doctor every 3 weeks as opposed to coming in weekly for treatment.Dawn, what do you think about those issues?

DR. HERSHAMN: I mean, I think the thing you sort of point out too as well is that we’re used to - we sort of can figure out how to give certain medications to control the side effects of IV chemotherapy, even given them along with the infusions.But there is this perception that somehow oral therapies are less toxic or, you know, that they’re, they have less side effects.But we see with a lot of these medications they have rash, they have GI side effects, they have a lot of side effects that we’re not so good at controlling.

And so - and that patients become very symptomatic from.And so I think until one of the things is trying to develop a whole field of supportive care around these oral medications that have taken 20 years to develop, around some of the IV medications.So I think we’re behind in terms of that.

DR. RUGO: Yeah, I agree and I think that we really do need to emphasize the education for both providers and patients.We talk a lot about patient education, but I also feel like provider education is one of those keys that we really need to, because you can over educate the providers.The other thing that is interesting is, you know, the gut toxicity is one thing and usually I feel like, you know, many cases we can manage it again if we know ahead of time.But one of the things that’s kind of emerging out of some of these drugs is that we may actually see less neuropathy and less hair loss.So that is going to be very, very interesting.

I mean like Xeloda it doesn’t cause neuropathy or hair loss, some finger, hand-foot irritation.But these new oral taxanes, I think that we don’t have them approved yet, but maybe we’ll have drugs next year., those are really going to be very interesting to understand.If people are staying on the drugs for a long time, whether it makes a difference.They’re going to only be approved in metastatic disease, just so people know.I mean, the studies looking at early stage disease are only being developed now.One of the areas that came up —

DR. HERSHAMN: (interposing) I mean I think, just to sort of take that one step further, is that now that we’ve gotten used to telehealth and teleconferences and, you know, figuring out how to remotely connect with people, we may be able to use that technology to better control patient side effects in real time.So it opens up a whole opportunity to try to help deal - help patients that are at home, dealing with these things.

DR. HERSHAMN: That’s a great idea and a great comment.So Ricki, have you done any telemedicine visits?

MS. FAIRLEY: I have done a couple of telemedicine visits and actually my GP told me she’s never going to go back to practice again.She’s like a family medicine doctor she said she’s going to do one day a week in the office. - - feels safe for her, she said I can see more patients, I’m more effective and I like it better.But, the one point I was going to make too was that are there some kind of apps we can come up with.And I think about one of my favorite movies is Rent, it’s about AIDS, the AIDS community and so they have - they all set an alarm on their phone, like it’s - - time.So is there a way we could develop an app for people with the drug?

So when you get the drug you sign up for the app and the app actually directs you on when to take it, how to take it, what you need to do, reminds you to fast from my whatever and kind of helps control those dynamics a little bit and makes it - it gives you a tool to use to help you do the right, do the therapy in the right way.So, I think there is some room for that.But still you know that that touching your doctor or touching your nurse is an invaluable thing.And having that conversation and just - it’s like reassurance like just getting the hug that you need today.And so I think - I don’t know how you make that - how that goes away.And maybe even telemedicine can help there and maybe it’s a virtual hug.

But just that people contact helps a lot because you’re so - there’s so many things to be afraid of when you have cancer.If you could just take one thing off the list, you know that would be a great thing to have happen.And it’s - and knowing that you’re doing it right, wondering if you screw something up what’s happening.And then my first chemo I actually got C-dif, and I had never had chemo before they told me I was going to be nauseous but I didn’t know what C-dif felt like either.And so I was like sick until one of my nurse finds came over and said oh my god this is not chemo you need to go to the hospital you are totally dehydrated.And I ended up spending 3 days in the hospital.But how would I have known that if I didn’t have a friend who was a nurse, who came to my house?

DR. RUGO: No I think that your comments are really important because I think that having a way for people to early call in and ask questions, I think that electronic health record has really improved that a lot because people can now send in - for example you might think, I’ve heard from patients well I don’t want to be a complainer, you know, so they won’t put in the information.So one of the things we do, we have chemotherapy teaching with our triage nurses, I think pretty much all enter do that now and really encourage people to send in message for anything.I think I agree with you that telemedicine that when people are on oral therapy and don’t need to come in quite as much, is an invaluable way.

And with our physician so called extenders, and I really just call them the provider group, but our nurse practitioners, our physician assistants, these follow up visits are incredibly important in managing symptoms and answering questions so that these kind of things are great.Just to go back to you app questions, I know a lot of people have worked on apps for diabetes medications, for many diseases where there are a lot of oral medications or you have to know to take an injection and check your glucose for example, these are good examples.

And you know for some reason they just are not so widespread.And I think it is really interesting, it’s almost just like another thing.You know for me, I got texts and emails all the time, it would be hard to have that one more thing.So I think we might see more of it and Dawn you may have a better perspective on this, as well.

DR. HERSHAMN: I just got logged out and came back in - - technology right.So you know like all of this works until it doesn’t.But yeah we actually have a few commercial apps that we’re testing amongst patients with complex medicine regimens now.And I think you know it’s really trying to find that sweet spot between being beneficial and being easy but not being like too much because we’re all inundated with information all the time.So maybe trying to find the right - just like we do with everything, trying to find the right patients where it’s going to benefit them the most and the patients that are at the highest risk.But there are so many innovate ways to do it.

MS. FAIRLEY: I think it’s an age thing too.

Patient / Physician Interaction

DR. RUGO:- - is nice about what you’re doing is that, you could maybe increase the intensity or decrease it so that it would be individualized, which I think is nice.Ricki, let me just make - you were talking about how the patient, physician or provider, nurse, nurse practitioner or PA interaction is so important to you.I think now in person visits, we can’t hug our patients, which has been a huge shift for all of us.There was a phenomenal editorial about a spoon of honey that somebody wrote that they gave to their - - patients and how that had changed everything.But I think that telemedicine we don’t have to wear our masks so I like to vary.I don’t think that telemedicine in anyway is going to take over in person visits.

I mean we see out patients in person, we’ve been seeing them since March.So in the - but patients who can’t do telemedicine visits we intersperse them and it’s great because now we can actually see what the person looks like, which is really wonderful.I think expression is so incredibly important.One of the things that - a patient, somebody asked about in our chat was about the fatigue that we see in patients who are on both early and late stage therapy and some people really have pretty profound fatigue.Dawn, do you want to briefly comment about that and then Ricki, how you managed that.

DR. HERSHAMN: Yeah, sure I mean I think it’s one of the things that it’s hard to quantitate for people.So it’s, also as we talk about patient provider discussion and interactions, like what’s fatigue for one person may be that they are only running 18 miles instead of 26.And what is fatigue for somebody else is that they can’t get out of bed.And so we really have to sort of tailor our recommendations for fatigue around it.I think trying to find what we can reverse.Is the person anemic?Do they need blood?Do they need less chemotherapy?Do we need to alter the dosing?But what we’ve also learned is that other types of interventions even just exercise can help people feel less tired.

And sleep, you know of course somebody is going to be tired is we’re giving them steroids and they are not sleeping at night.Se we have to really think about what we can do to improve it.I think there is a lot of work trying to understand the mechanisms of fatigue and they are going to be different for different drugs.But there is no question it can be debilitating.

DR. RUGO: Ricki?

MS. FAIRLEY: Yeah so I think you’re right, you know fatigue is all relative to what your activity level is.If you could be a marathon runner, so you’re right about running less miles.But, I tell everybody take a walk.To me it’s like take a walk even if you can only walk up your driveway, even if you can only walk around the block.However far you can walk, even if you can only walk around your house take a walk.But I always say go outside because you see god, you see nature, you see miracles all around you.And so that alone gives you energy that you wouldn’t have had if you would have stayed in your bed.So get up, put your clothes on or whatever, and just walk outside for 5 minutes.

Every day you can walk - - and you have those cycles where one week you have a lot of energy.So - - but go out and look at the flowers, look at the trees, look at the sun - - touch nature and see miracles all around you because not only will it give you energy but it will make you feel better and just help your treatment and make you feel better about life.Because you see life all around you.So that’s my advice to everybody.

DR. RUGO: And Ricki what do you think - Dawn there’s a question just about more information about the apps that you’re testing for home meds, but and I’ll let you answer that in just a second.But Ricki, just do you think you - you didn’t have to take oral medications, but do you think that do you see in the people you talk to as an advocate now that these apps would be added value?

MS. FAIRLEY: I do.And you know it’s an age thing.I’m old so it may not work as well for me as it would for a younger woman.But these millennial women, they’re all really busy with their kids or whatever, I think they would.And they use apps for everything.I mean when my first granddaughter was born, I was the nanny on Mondays and so my daughter gave me this app.So you have to put in the app when the baby ate, how much they pooped, the time they pooped, how much formula you gave.

I’m like, I can’t do this Amanda, like - I lasted 2 days with the app and I said forget it.I am not the nanny I am the grandma and I am not in this app.But she still lives by that.And so I think at 35 - at the 30 to 40 year olds and god bless if they have breast cancer to begin with at their age.But I think they would respond better to having some kind of tool on their phone that dinged, that gave them a signal or something, I think it’s a good thing.For maybe an older woman like me maybe it wouldn’t work as well.But, then you know I think if I - if there were an app, my daughter would say mom, it’s time, it’s time to take your pill.Like somebody in the family would sort of take control of the app and then tell me what to do as the mother, or the grandmother.So I think - I do think there’s value there, I do.

DR. RUGO: And Dawn, anything more about the kinds of apps you are developing?Somebody was interested in that

DR. HERSHAMN: I mean some of them are actually available.I mean some are really complex and helpful and you can - you put all of you medicines in once and it tells you what to do and it’s this little pill bottle that you can see that you have taken this in the morning and you still have this in the evening.And if you don’t do it you get a little reminder, a text reminder.Like you can put a window around it.Like I normally take my medicines from 8 to 9 and you get a little thing that says did you take it?

Yes, and then you can see your chart overtime about how often you take it when you’re supposed to.And if you don’t you get a you forgot to take you medicine yesterday, did you just forget to put it into the phone?SO there are things like that that are interactive.There are actually digital medicines now, which is a really cool thing where you can take a pill - I mean not for all medicines, but for certain types of medicines that may be very expensive or may be a shorter course, like hepatitis C medicines, or whatever the thing is and you can put a little bit of copper in it.

And so if you were like a fit bit kind of thing it can capture every time you’ve taken the medicine and it actually can alert somebody if you stop.And it was particularly helpful for like medicines for psychosis.So if a patient is starting feel really good that had a psychiatric abnormality and stopped taking their medicines, maybe their provider or a family member would get notified.After they stop taking it for a few days they could be at high risk.But there is also —

MS. FAIRLEY: (interposing) I love that.

DR. HERSHAMN: But there is also electronic pill bottles - - prepackaged things that every time they open it up to take it, it alerts their phone that they took their medicine.So there are all kind of nifty kinds of technologic devices that can be used to help people figure out how to do it better.

MS. FAIRLEY: Yeah, I think about my older parents, my elderly parents and the medications that they’re taking.If I could have an app to manage them, that would be great, to just know that they’re complying.Because you don’t really know and you worry about whether they are taking the stuff.And mom, did you take your medicine today.So I would definitely use it even from that perspective, you know, to help manage somebody else, right.So I think it’s all good, the technology is all good.but keep it simple, stupid, you know.

DR. RUGO: I think that these are really really important and as we get into drugs that require fasting or specific schedules or pre medicationsand are largely given at home and offer some advice, advantages to our patients in terms of, as I was mentioning before the long term really terrible quality of life impacting toxicities like neuropathy or the short term impacts like hair loss.Which are important, so incredibly important for our patients these applications are going to be part and parcel for everything we do.Now part of —

MS. FAIRLEY: (interposing) I have one thing, I have one thing.

DR. RUGO: Go ahead.

MS. FAIRLEY: I was going to add, I love - - on pro, you - - mentioned that because I didn’t have that app option.And my daughters took turns giving me that shot, they had too much fun with it.Bu the fact that it takes the worry away right, everyday - it takes the - you don’t have to think about it.So that auto injection thing is really really great because (cross talk) you don’t have to think about tit, right

DR. RUGO: And I think one on the issues that is fascinating about the auto injection is that it was developed really as a way to counter the fact that these biologic agents were going to be made into biosimilars by competitors and so the market share was going to be lost.And it’s a fascinating sort of lesson in drug development and what we put out for our patients.So, because of that the nobody device was developed because it allowed people to have an advantage so that they would use the branded product and not the biosimilar.And in fact it’s incredibly great for our patients.

So I think that is something that I think has really changed things.If you get the self-administered drug, sometimes because it is self-administered people have a share of cost because it is delivered to home.So, getting the on body device, the on pro makes a difference.And this is a growth factor for those people who are interested - who are listening don’t know, it’s a patch essentially that goes on your skin and 24 hours after you’re done with chemo delivers your drug and then you peel it off and throw it out essentially, it delivers the white blood cell growth factor to keep your white blood cells strong.So, let’s talk a little bit about - we talked some about adherence and one for the things - - we talked about telemedicine which I think is a really interesting area where we have been able to expand communication, a lot.

But for example now you can do use telemedicine to tell people their scans instead of calling them 15 times and hoping they pick up, which is just great.And then they can’t remember what you said.The - now with COVID I think we get a lot of people who want to delay screening or active treatment to try and not come in.And one of the questions is what advice do you give patients about that?I think it’s been a big concern in the area of breast cancer.Dawn do you want to just address that first?

DR. HERSHAMN: Yeah a huge problem because we’ve spent so many years trying to increase trust with the community that these - all of our screening and cancer prevention activities are important.And then there’s now the perception that the medical facility puts them at risk.And so we have to really figure out how to create safe environments so that people really understand the benefits.I think numerous studies have shown that they’re very concerned that based on modeling that patients are avoiding their screening, we’re going to see an uptick of patients presenting at way later stage disease.And, I think that we’ve learned a lot with COVID, but we also know how to protect people and to create safer environments for people.People should be coming back and getting their screening tests and the other things that they need to make sure that they’re getting all of the surveillance testing and mammograms and colonoscopies that they need to try to prevent something bad from happening.

DR. RUGO: Ricki?

MS. FAIRLEY: Yeah, first of all on your last one, I did learn last week that there’s a 31 % efficacy benefit because of because of on pro and I love that.But you know I have this conversation every day, every day with somebody, yes you have to go get your mammogram, yes you have to go to chemo, yes you have to get the therapy, yes you have to get the scan.And I’m so frightened about what the impact of this is going to be in terms of the cancers being undiagnosed and the stages at which they are diagnosed.It’s frightening to me what the world is going to look like, the breast cancer world a year from now.I think our mortality rates are going to get higher, it’s not gonna, it’s not a good thing.

So, I post a lot about that on social media.I encourage people on the phone all the time, please get your treatment, please get your scan, please get your mammogram.This is no joke and you can’t let COVID kill - COVID is going to kill you even if you don’t have COVID.But you’re letting COVID kill you by not doing what you have to do to take care of yourself.So, I have that conversation with at least, at least a person every day.So we just have to keep talking about it and make it known to people that COVID cannot rain on your parade, you’re not helping yourself, you’re actually hurting yourself by not getting your treatment or getting your scans or getting your mammograms.

DR. RUGO: I think that’s really important.And one of the things that I think has happened in the health care area is in fact the providers seem to be at more risk from the patients than the patients are from the hospital environment.I think this has come to light a couple of situations where I heard of cases of patients who were - had a family member who was diagnosed with COVID but just didn’t see themselves at risk and come in for their treatment and answered no to all of our detailed screening questions, but of course tested positive for COVID 2 days later.So one of the things that I think is helpful for patients and providers is that we now wear masks, we’re required to be masked all the tie we’re in any - the medical facility, unless you’re in a room all by yourself.And to clean the counters, of course, there’s a lot of cleaning going on.

And then the face shields play a big role and the same is true of travel.I mean this is what I recommend to people is that you really need that combination of mask and face shield to protect yourself.And you can get the treatment that you need and do the screening tests that you need to do.Obviously not if you’ve had a recent exposure but otherwise yes.So, I think that’s —

DR. HERSHAMN: And we know - it’s a good point because we know that all of that protective equipment and washing your hands and using pure, they work, it really does work.

MS. FAIRLEY: It works.

DR. HERSHAMN: So I think that is important.And I being someone who never - who still is completely perplexed about the anti-maskers I think it is really really an important part in healthcare and in oncology.But one question that came up is about whether, and we talked about this briefly but I’d like to hear your thoughts on this Dawn, is do black women tend to get triple negative or more aggressive forms of breast cancer overall?

DR. HERSHAMN: Yeah it’s - we certainly know that there are disparities in outcome based on race.And so while black women are less likely to get breast cancer, they’re when they do stage for stage they have a higher risk of dying from it.And one of the reasons is that there’s a slight differences in the biology.Of course this is a statistical phenomenon.So we know that black women have a higher likelihood of getting triple negative breast cancer, so do women who have BRCA mutations, have a slightly higher risk of getting triple negative breast cancers.

But of course everybody can sort of fall all over the spectrum.And we also know that triple negative breast cancer is not all the same, right, there are many many different types of triple negative breast cancer.So there’s no question that there are differences in the biology of the cancer.There’s differences in host factors, people with comorbidities, more comorbidities may have different types of breast cancer may tolerate treatments better or differently and may have different efficacy from treatment.

So it’s about the person, it’s about the type of cancer, it’s about access, it’s about completeness of treatment, there’s so many different factors that come to play when we talk about disparities and outcome.

MS. FAIRLEY: Yeah there’s a study —

DR. RUGO: Yeah it’s really important to think about - Ricki and I’ll ask you to comment on that in just a moment.But just to mention that there was a group, the Carolinas, a breast cancer group that actually was some of the first data that showed on younger black women, triple negative breast cancer was more common than in some other groups.But in post-menopausal black women the actual sort of distribution of breast cancer subtypes, again less commonly diagnosed, but overall tend to be the same.Ricki, your comments.

MS. FAIRLEY: Yeah there was study done 2 years ago by Leah Stat at the University of Georgia, she’s now at Emory and that was the first national study done on triple negative in black women and her research indicated that black women get triple negative breast cancer at 2.3 times the rate as white women.Just overall breast cancer you know the mortality rate for black women is 42 % higher.And the data for young black women, black women under 35 are getting breast cancer at twice the rate and dying at 3 times the rate.

So I do believe it’s different for us and I do think there are a lot of psycho social factors as you mentioned, Dawn, but I do believe there is some physiological differences that we have not uncovered yet.Frankly in clinical trial research, black women only represent 3 % of clinical trial research.And so without really having data we don’t know.And if you look at the Trodelvy they had about 7.8 % black women in their trial.And ten centric had like almost 20 % of black women in their trial.So, those drugs have a better track record with black women because they had more of them in the trial.

But until we get that research happening with black bodies ad black women’s bodies, we’re never going to really know what the efficacy is for black women and that’s what I try to do every day.That’s what I’m working really hard at is try to encourage black women to participate in research.And so my, kind of my latest - I’m a marketing person, so my latest sort of marketing message is do it for you daughters.And overcome that fear and that mistrust, do it for your daughters if you’re not going to do it for yourself because we do everything for everybody else.

So, black women you know we take care of everybody else except ourselves, so do it for your daughter, do it for your sons, do it for your granddaughter.And hopefully that message will resonate and we will make some headway.But we’re doing a lot of research right now just to understand the basis of that mistrust.And we know that there’s a lot of history and there’s a lot of stuff that’s been tested and evaluated before.But I think there’s something emotional that we haven’t uncovered yet and that’s what I’m working on with TOUCH right now.

DR. RUGO: And I think that that work that you’re doing is really critical because access to trial information, that trust, access to general care, all very very important.But interestingly, stage for stage, as you pointed out outcome can be worse because biologically the subtypes seem to me more aggressive and we don’t understand that.One of the questions that came up, why is this true?And we just don’t understand it and it is fascinating I think that we’re just uncovering these issues now and there is a lot of work going on just to look at the biology and look at outcomes.

Comorbidities that have been mentioned, just to define that word, have to do with other medical problems that you have, that impact your ability to tolerate treatment or your underlying toxicity. For example if you already have bad neuropathy, nerve pain, nerve dysfunction in your hand and feet from diabetes, or you have diabetes and your just at risk for it, we can cause permanent neuropathy very easily with the standard treatment we give for triple negative disease.So it may really really limit your ability to be exposed to therapy that helps you to live longer.So that’s an example of how comorbidities or for example heart disease, hypertension, et cetera might impact your ability to tolerate treatment.

But that’s certainly not by any means, the answer.So I really applaud the work you’re doing, Ricki, because we need you to be multiply - be multiplied.

MS. FAIRLEY: Well we are actually promoting on our social media, a study right now being done on neuropathy in black women.I can’t remember exactly what it is but if you go to my Facebook page it is on there.It’s so important.And even lymphedema, you know lymphedema is a huge thing for us.And it’s funny because I don’t really feel neuropathy until I talk about it and so now I feel it now because I’m talking about it.ButHave it still 9 years later, not so bad.But really every aspect of our disease need to be researched with black women.So I’m trying to make that happen.

DR. RUGO: Not to - you know I mean I think it’s really important, but we need to look at, we have a lot of even smaller ethnic groups and I think we need to be trying to focus on them.We’re terrible in clinical trials and also just in focusing in on those areas.I think the lymphedemaquestion is really important and Dawn maybe we just have time really to answer this question and then we’ll be wrapping up because I’m going to have you each make one wrap up statement so you can prepare.So Dawn, are there studies looking at chronic lymphedema?How do we - I mean I think there’s both prevention and treatment.

DR. HERSHAMN: Yeah absolutely.I mean we know that certain factors like baseline weight and exercise all can impact risk of lymphedema down the line.Obviously we made a huge improvement by taking out fewer lymph nodes on so many women and that’s probably the best thing we could have done as really established sentinel lymph nodes for so many people.But now there’s actually very interesting surgical techniques that are being done called lymph vascular bypath where they can do micro surgery on the lymph vessels at the time of surgery to try to help prevent lymphedema in people that have to have a lot of lymph nodes removed.So I think trying to get at it from all the different angles might help in the future.

DR. RUGO: I think it’s amazing that we used to - you know I never agreed with this but I remember as a medical student in the 80’s people said - the early 80’s actually that you shouldn’t exercise because you would make your lymphedema worse.And now it’s thought that exercise can actually help prevent the lymphedema.Which always made sense to me, it just didn’t matter.So, in our last few minutes, so Ricki do you want to make some sort of a summary statement about the things we’ve talked about and what you want to convey to our audience?

MS. FAIRLEY: Sure sure.So in the black households we don’t talk about illness we don’t talk about disease.There’s a lot of secrets, there’s a lot of uncovering, waiting until someone gets sick, oh yeah grandma Edith had that.So I implore everybody to know your her story, know your her story, know your history.Make breast cancer a conversation with your family.You know, early detection is our only protection.And so, so many young black women are getting breast cancer that we need to talk about it.So when your daughter wants to get birth control pill and she goes for her first gyno appointment she needs to be checking her breast.Know her and talk about breast cancer, but it on the kitchen table.

It should be something like your hygiene, like going to the dentist.But you know check, I always tell everybody, check the breast you love, I know you have a pair.But I want this conversation to be something that’s a common conversation in the household, it’s okay to talk about, about all disease, but specifically about breast cancer.And, talk about it at a young age, make your kids comfortable talking about it.And know your normal, so that when you do feel a lump or feel something unusual you can advocate for yourself and you know what it feels like.So you know your body better than anybody else.So I say make it a conversation in your household and don’t be afraid of science.Let the science work for us.

DR. RUGO: thank you so much Ricki, for your great comments, and I applaud everything you’re doing, it’s really wonderful.Dawn, we just - you get a hold a sentence, sorry but.


DR. HERSHAMN: That’s okay.First of all thank you so much for organizing this.It’s so important that we think that and we end this optimistically ‘cause there’s so much improvements so many new treatments out there and so many new ways of controlling side effects.So I think there’s lot of room for optimism going forward.

DR. RUGO: And I want to—

MS. FAIRLEY: (interposing) Can I say one more thing really fast?

DR. RUGO: I think we have to end unfortunately, keep it.I know you have - we could be talking for hours, I know, we all have a lot to say, but we have our - we have run out of time.And I am so grateful to both of you for your excellent comments, it’s been such a fun discussion and I’d love to do it again.And for our audience you can watch the webinar again, it will be available on on demand webinars page of curetoday.com within the coming days.And you know the - I think these kind of events are so incredibly important for our patients, our community and the fact that you donated your time and energy for doing this is really really important.And the work you’re doing also, incredibly important.

I also want to thank CURE for making this happen and their focus on patient education and communication and our partners Susan G Komen and Athenex Oncology who makes one of the oral taxmen that is posed to hopefully be in the clinic in the near future.And they were able to provide funding for today’s educational webcast possible.Don’t forget to check your email however, tomorrow, for the survey because if you fill out your survey you can be entered to win a gift card, which is always nice in today’s age and anytime.Thank you all for joining, we’ll see you next time.Good bye.

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