EDUCATED PATIENT® Advanced Bladder Cancer Full Webinar


At the CURE® EDUCATED PATIENT® Advanced Bladder Cancer Webinar, experts discussed the role nurses play in care for patients with bladder cancer, new treatments and more.

DR. JONATHAN ROSENBREG: Thank you so much, and it has been a pleasure to be here today with you.So, I'm going to first start out talking a little bit about what the standard of care is for advanced bladder cancer, and then we'll talk about--and we think about taking care of patients, both on clinical trials, and with standard treatments, and think about it from the patient perspective and the patient advocate perspective as well.

So, when we think about patients with metastatic bladder cancer, we have to consider that the standard of care still remains chemotherapy as the first line treatment for most patients.There have been several large clinical trials that have recently showed us that chemotherapy is not beaten by immunotherapy; that in fact, for most patients, chemotherapy is the best place to start, and the standard regimens usually are gemcitabine with a platinum drug, although there are some patients who are getting chemotherapy regimens, such as MVAC.

We know that from other trials that have been done recently, that if you have chemotherapy and you do well, that you can go on to get immunotherapy as a maintenance treatment, after you complete your first line chemotherapy, because we know those patients live longer and do better, and actually had a fairly substantial improvement in the average survival for patients who get immunotherapy.

We also know that some patients whose tumors express very high levels of PDL-1, which is a target of the immune drugs, the immune checkpoint drugs, that they may be patients who may get immunotherapy in the front line setting instead of chemotherapy, and that's the discussion you have to have with your doctor.It's a somewhat subtle discussion around what options might be appropriate for you if you're first diagnose with advanced cancer, and then for patients where chemotherapy or immunotherapy has stopped working, we have two new drugs that are very exciting

One is a drug called enfortumab vedotin, which is something called an antibody drug conjugate, which basically takes chemotherapy and attaches it to an antibody that's targeted to a molecule on the surface of cancer cells, and selectively delivers it to the bladder cancer cells preferentially above all the other cells in the body, reducing the side effect profile of the medicine for patients, and so that is a new treatment that was just FDA-approved a little under a year ago, done inexpensively [phonetic] in clinical trials, and also another drug erdafitinib, which is an oral medication targeting a molecule called FGFR3, or the fibroblast growth factor receptor 3, and that drug is a pill taken once a day by patients who have mutations in that gene, and it's about 15 to 20 percent of patients who have metastatic bladder cancer, will have those mutations in the genes of their cancer, and might be candidates to use that.

But when we're thinking about the types of treatments for advanced cancer, we really have to consider the patient in front of us, and the medical conditions they have, the comorbidities that they have, the limitations, functionally or other ways in their life that they may have, and so Asia, when we're thinking about putting people on clinical trials or on other treatments, how do you engage a patient around some of these issues around side effects, and how we might guide patients as far as treatment?

ASIA MCCOY: So, I have to agree with you, Dr. Rosenberg, in terms of looking at the big picture when it comes to patients, and nurses are really pros at that, so one of the more significant things that I like to zero in on is, if the patient has been treated with anything in the past, whether that has been surgery or radiation therapy, if they've had chemo, if they've had some type of targeted drug, and now, you know, the landscape has been really changed with the introduction of immunotherapy drugs that we're using for bladder cancer, and also targeted therapy, and another thing that we have to consider, too, is the identification of mutations, where we can introduce targeted [break in audio].

You also want [break in audio] functional statuses.Is this someone that is still working, still maintaining their regular lifestyle, or is this someone who needs assistance to do everything, including activities and daily living, so, you know, is cooking a chore for them, is bathing a chore for them, is getting dressed a chore for them?You want to kind of incorporate treatment and potential side effects to round out this picture and eventually come to the best therapy for the patient.

DR. ROSENBERG: And it's important in that context, really - - , what's actually happening in the patient's life, who's helping them, who do they have as resources, do they need help, are they completely independent?Some people want to be independent, but maybe actually aren't able to handle it, and identifying those, and finding the resources, and that's where our nursing colleagues are very good at sussing a lot of that out, in fact, probably better than a lot of doctors are, I would say.

What--in terms of communication between doctors and patients, Karen, you've been on both sides of this, perhaps uniquely, and what advice do you have for physicians and nurses and other healthcare providers to really understand the advances in treatment and how it affects patients.

KAREN SACHSE: Well, the thing I really want to zero in on is the fact that information that you're talking about in the session with the family, it needs to be written down, because I have to tell you how many times I went home, and I was there as eyes and ears for my husband, and I went home, and it was like, now, what was that drug, what was it all about, and so having it written down, and having it in simple language, even though patients are--may have gone to college, or are very sophisticated, when they're sick and when they're stressed out, they have a very difficult time interpreting high level language, so keeping it very simple and in plain English, I would say, is really important.

DR. ROSENBERG: Yeah, I spent a lot of time training fellows, and one of the things that I harp on with them is that, don't use jargon, explain it to the patient as if you'd explain it to your parents or your siblings, because it's very easy to--you lose people very quickly that way, and it's--our job is really--in addition to treating patients, is to really educate them about the treatment, about the disease, and about their options, and if they walk out of the room with their head spinning, it's not a good experience for anybody, unfortunately, and only will prompt more questions the next day.

So, what do you--how do you counsel patients--let's say patients come to you asking, where can I get information, and how can we--and are there resources, Asia, that you point them to, or Karen, that you found useful?

MCCOY: Oh, definitely.At our institution, we have a patient education resource section, and that's where all of our patient education fact cards live, so when we're doing education with patients, we have them referenced there--they signed off on, it's really like a guideline whenever they're going on study, and I'm using the term, informed consent, because my specialty is clinical trials.I am a clinical trials nurse at Memorial Sloan-Kettering Cancer Center, and that document is written in layman's terms, really easy language to comprehend and break down and understand, so we have that compiled with the patient education fact cards that are also written in layman's terms, and those speak to the drugs that they're going to be treated with, if it's something that is approved by the Food and Drug Administration.

If it is an investigational drug that is not approved by the FDA, then that onus is on the clinical trials nurse to break down how that drug works, and then we also have Beacon as a resource.I've given that information to many patients who have gone online and gotten a lot of resources, joined groups, some are even interested in becoming patient advocates, so as much as you can give, and also assessing the need, because as Karen stated, writing down things was really beneficial for her in her situation.

So, patients learn in different ways.Sometimes they are visual learners.They like to actually see things, or they like to hear things, so if we have those resources, it is upon--it's on the nurse to make sure that we can connect the patient and their caregiver with that information, also making sure that a second party or third party is available.It's always really good to have a second set of eyes and a second set of ears, so if a patient comes in on their own, and they express to me that they're not confident with intaking all the information that we're giving, we will get somebody on the phone, or get somebody on Facetime to kind of take notes or listen in, so there's more than one individual getting that information.

DR. ROSENBERG: Karen, anything you want to add?

SACHSE: I just want to say, one of the things that I did that was really helpful was, I put together a notebook, and had it labeled, different sections for lab work, for appointments, I mean, I took notes at every appointment--

DR. ROSENBERG: [Crosstalk] medical charts.

SACHSE: Yeah, and you know, I mean, in the clinic where we were, their record was not computerized at the time, and so it was actually very helpful for the nurses to have all that information, because I had it right at my fingertips, but then all the handouts that the nurses would give us went in that notebook, and it was--just helped me stay organized, and I brought it to every appointment, and it was like my bible.

DR. ROSENBERG: Yeah, those are very helpful when patients--not every patient, I think, works--is as organized as you are, would be, or were, but those are actually very helpful for the doctor when the patient walks in with a binder and says--especially if it's someone who gets part of their care in other places, oh, this was done on this date, and they just flip through it and show it to you, and you don't have to reinvent the wheel, but that puts the onus--that's great if they can do that, I don't want to put the onus on them for it.

SACHSE: Well, I know, and the other thing that was really helpful is, I learned to get copies of the scans, and so I would bring those around to different providers, because as with bladder cancer, it's multi-disciplinary, and different specialists, and so again, it really came in handy, and it was really helpful to the providers.

DR. ROSENBERG: I can imagine.So, I wanted to shift gears a little bit and talk about some side effects.I wanted to just briefly review some of the types of side effects we see from the types of treatments that we are currently giving for advanced bladder cancer, for metastatic bladder cancer.So, for patients who receive chemotherapy, some of our medications lead to peripheral neuropathy, which can mean numbness and tingling in the fingers or the toes.That can be progressive in some patients, annoying in most patients if it happens, and sometimes, really affect quality of life and mobility if it gets severe.

Other side effects often include fatigue, which is unfortunately a side effect of many types of cancer treatments, not only chemotherapy.In addition, patients who get chemotherapy are at risk for infection, often because their white blood cells may become very low, and their neutrophils, which are the infection-fighting cells, may be catastrophically low, very, very low, and so an infection that usually your body would shrug off, becomes something actually quite serious that requires medical attention.

For patients who are receiving immunotherapy as the mainstay of treatment, so these are the IV medications that are antibodies targeting molecules on the surface of immune cells, that these medications actually can trigger autoimmunity, where your body is attacking itself in ways that are sometimes predictable, and other times very unpredictable, and what I tell patients is that probably a third of patients have few or no side effects if they're getting single drug immunotherapy.About another 40 or 50 percent of patients have mild to moderate side effects that can be managed pretty easily, and then anywhere from 10 to 20 percent of patients may have more severe side effects that could require hospitalization or high doses of immunosuppression, and then very, very rarely, people can die from side effects, both chemotherapy or immunotherapy, or any cancer treatment.It is a very rare event, but unfortunately, it does occur.

For patients receiving the antibody drug conjugate, enfortumab vedotin, neuropathy, fatigue, and high blood sugar are issues that we see, and for patients receiving the targeted therapy, erdafitinib, you can get mouth sores, changes in the fingernails, and it also raises your blood phosphorus levels, which have to be monitored and dealt with if they get very high.

So, side effects, there's no free lunch in cancer treatments, unfortunately.I wish there was; it would make all of our days much easier, and patients much happier, but while we work towards less toxic treatments, we've learned how to manage a lot of these things, and ameliorate them or adjust doses and modify treatments, and really, frankly, the oncology nurses are at the forefront of this, both clinical trials and not clinical trials oncology nurses.Asia, how do you go about assessing these things when you see patients in terms of how they're doing, and in terms of what things you want to focus on with the doctor about the patient, and with the patient?

MCCOY: So, from having a special knowledge, experience [break in audio] these therapies, you kind of know how to zero in and ask the right questions and peel back the layers to kind of figure out what's going on with a patient.Sometimes, patients and their caregivers are very, very detailed; they will let you know everything that's happening at every moment, and then you have another [break in audio] patient - - to try to get that information out of them, to try to help and to try to intervene, so really having a focus assessment depending on what drug the patient is being treated with, and also a knowledge, having a knowledge of that particular patient.

It's almost like treating a patient like they're in a silo, even though you may have several patients who are on that clinical trial, so with knowing all of those things, you kind of know how to pick and pull, get to the bottom of the situation, and discuss it with the disease management team to come up with the best solution and best intervention to help the patient and manage the patient.

DR. ROSENBERG: And as a patient, do you have to be - - , to describe what your symptoms are and let the team taking care of you know about them, it's--we really try--people try--you try to ask all the questions, but sometimes, we don't get to the heart of it as well as we good, if the patient is not willing to be forthcoming about what's happening.

MCCOY: I have to say, that's something that we focus on, too, on patient education, not to cut you off, Dr. Rosenberg, but we try to make a stamp and a note of letting the patient and their caregivers know that this is a 50/50 partnership.We're here to treat them, keep them safe while we're treating them, manage any side effects or symptoms, but it is their responsibility to know what's going on, what's happening with the drug that they're being treated with, to monitor themselves, to care for themselves, and to also communicate with us and not wait to communicate.Because if we can fix it at the very beginning, instead of it escalating and getting to a point where we have to fix the problem and hold off on your treatment, we would much rather do that.

DR. ROSENBERG: Absolutely, I agree with you.And how did nurses help you manage your experience with your cancer treatment, as well as your husband's?I mean, what was--and being a nurse, how did you relate to that and watch it happen?

SACHSE: Well, I think the biggest think that the nurses did, and I find the--really, a very important role is the anticipatory guidance to really know the treatments, know the drugs, and to really be able to say, these are the potential things that can happen, and like I said, and if it's written down, then I'd go to my book and say, hey, we're having this, this is a side effect, and this is okay.

One of the practices that we dealt with had a call-in line, so that between visits, if we were having an issue, we could call in and talk to a nurse directly, and that was nice, because then we didn't have to go through a lot of different people and a lot of different steps, but I will have to say that as far as managing side effects, one of the biggest things that--it was like a light bulb went off for my husband, when he was referred to palliative care, and they were just rock stars as far as managing his pain, his nausea, you know, his loss of appetite, and I just can't say enough about palliative care and partnering with them to really help to mitigate these side effects for patients.

DR. ROSENBERG: Yeah, and not only do they help with side effects in an enormous way, there are actually studies that have shown that simply by seeing palliative care in addition to your oncologist, you actually live longer than if you just--your oncologist, and if it was that fancy, expensive new drug, we'd be all over it, and everyone would get it, but because it's palliative care, people have an idea that, oh, why do I need these people, you know, but it really makes a huge difference for many patients, and one of the things that I feel lucky with is that we have palliative care within our own practice, actually.We are co-located with a palliative care physician and team who are very accessible with us, at least before Covid, and I'm sure they'll be back once Covid is under control, but it really--I can't say enough about how helpful they can be, and it's a working partnership between the oncology team and the palliative care team, because they can focus on a lot of things while the oncologists, and the oncology team focuses on the cancer, it's really very helpful as a relationship.

So, one other thing we wanted to talk about specifically was clinical trials, because every treatment that every cancer patient gets these days, used to be in a clinical trial before it became a standard, accepted cancer treatment.It's the only way that patients--that new treatments end up getting to be approved for patients for use widely.The goal is not the trial, the goal is to develop better therapies, so that we treat our patients better, that people live longer and live better.

I just want to make one point, actually, that by the way, going back to what you were saying about palliative care, I think some patients think about palliative care as hospice care, and it's not--palliative care and hospice care are not the same thing.Hospice care is end of life care, when cancer treatment is no longer an option, whereas palliative care is really symptom management.In fact, at MSK, we've actually--they've changed the name of the service to the symptom management service, because there was this negative connotation which really shouldn't be there about palliative care, and so I just want to make that clear to people.It may be a little confusing sometimes.

But going back to clinical trials, this has been a time of enormous change in the treatment of advanced bladder cancer.I've been practicing since a little after 2000, and for about the first 15 years, 14 years of my practice, there wasn't really anything new.We did a lot of clinical trials, nothing really worked, and it really felt like you were banging your head against the wall for a long time, and there has been an explosion of opportunities and options stemming from the understanding of the biology of bladder cancer, as well as work that has frankly been done on other diseases that got translated to bladder cancer and helped bladder cancer therapy, so the immunotherapy revolution, these antibody drug conjugates, all these types of treatments didn't start necessarily on bladder cancer, but we've learned very quickly from our colleagues, and we've been able to show that a lot of these treatments are very helpful.

There are a few things that are very exciting.There are some novel immunotherapy approaches that are being tested in large clinical trials, and we may see some results from some of these in the next few years, where we're trying to target the immune system from different approaches.Sometimes, it increases the side effects, but it also seems to increase the good effects, at least we think so, and so that's why some of those trials are very exciting, and these are things like targeting a molecule called CTLA4, autoimmune cells, in addition to targeting PD-1 or PDL-1, so combination immunotherapy, and there are some clinical trials now looking at combinations of targeted therapies and immunotherapies, with the idea that the targeted therapy might change the immune environment within the tumor, so that the immune system can actually better attack the cancer cells, and then there are trials now testing that drug, enfortumab vedotin, in combination with immunotherapy, and preliminary data has been very, very promising, and there are large, randomized trials going on now, trying to see if it's better than the regular chemotherapy that we give, and actually, the combination of enfortumab vedotin and pembrolizumab, which is one of those checkpoint drugs, immune drugs, was named as an FDA breakthrough therapy recently, and is in clinical trials in patients who have not had prior chemotherapy.

So, it's very important to think about clinical trials.They're not always right for everybody, but it certainly should be on the list of options for patients.Not every patient can get onto one because of their health issues sometimes, and not every patient feels like it's the right option for them, and that's totally fine.How do you help patients wrap their heads around a clinical trial, Asia?I mean, the first question that someone says to me is, oh, I don't want to go in a clinical trial because I don't want to get a placebo, well, and we have to explain to them that not all trials have placebos, and that most trials don't, so how do you break things down for patients so that they're aware of what's going on?Because implication is critical.

MCCOY: Well, what I like to do initially is assess where they are knowledge-wise.Nowadays, our patients are very intelligent, very savvy, they have a lot of information, and they know how to get a lot of information, so it's kind of helpful to figure out where to start, by figuring out what they already know.Also, the myths about clinical trials, and kind of dispelling a lot of that stuff, you know, some patients will use terms as, you know, you just want me to be a guinea pig, or like, I'm a lab rat, or you have to encourage them and make them feel confident about the process of being a patient on a clinical trial.

Also, informing them about their rights and responsibilities as a clinical trial patient.Once you sign your name on an informed consent, which is a legal document that authorizes us to screen a patient for a clinical trial, and also says, the patient, from a legal standpoint, has the understanding of the clinical trial that they may become a part of.We can really get to the heart of the matter once we get some of those things out of the way.So yeah, trying to help the patient in the most practical way that we can to peel back the layers, so that they have an understanding, because the fact is, it means nothing if they don't understand what's happening and what's going on with the clinical trial.You don't want somebody on a trial who feels like they have no understanding of anything that's happening once they start to receive treatment.

DR. ROSENBERG: So one of the--the informed consent process really has to be informed as much as possible, people have to understand what's going on, even--everyone, you have to meet people where they are, but they have to end up at least understanding what's part of this, what's part of the trial and what's not, and I always tell patients that I have a responsibility to the study, but my first responsibility is to you, the patient, in that we're going to look out for your interests first, but we also have to make sure that we're not violating the protocol, and doing things that we're not allowed to do and not supposed to do.

Unfortunately, there is a lot of mythology around clinical trials involving placebos, and are you getting what you think you're supposed to be getting, and those take some time to go through, and there are some trials that have placebos, but they tend to be trials where you add something on, so it's treatment A plus B, or treatment A plus placebo, and so patients are almost always getting active treatments, at least in our cancer trials here in the US.

So, when people are thinking about a clinical trial and whether or not they'll enroll, I think they have to--what's important, my experience has been that people need to understand why the trial is being done, and what's in it for them, and why would--what is the deficiency in the standard treatment that we want to try to remedy by doing a clinical trial?Because as I think I said before, we don't do them for the heck of it, we do it because we're trying to develop better treatments for bladder cancer, and so if you're a patient, ask your doctor, why do you think this is a good idea?Why should I do this, why shouldn't I just take the standard treatment?And you'll probably get a pretty good answer about why.It may or may not be enough for you to want to do it, but it's important to think about, and not every clinical trial is for every patient, obviously.

Karen, so what do you--how do you--I don't know if you participated in any clinical trials yourself as a patient, or your husband did, but as they were being discussed and presented, how did you think about it, and how should people think about this issue?

SACHSE: We--I was not on a clinical trial.We tried to get my husband enrolled in a clinical trial.Unfortunately, he was not eligible.I think that one of the factors for us was that the treatment center where he was getting his care was two hours away, and I was trying to work, and juggle that, and his treatments, and being his caregiver, and so the--not having the trial available in the community was really a huge consideration for us in our family life.

And then, I would have--we would have done anything, if he had been able to get onto one.The--everyone really explained everything perfectly.The issue with us is that his disease was progressing so quickly that--it was back in the day when sequencing was not done right up front, and so he did not have the genetic sequencing done in a timely fashion and available to be able to get onto a trial, so knowing all the eligibility criteria, which is what you all are so special to be able to kind of look ahead and maybe say, hey, maybe we should get sequencing done earlier than--instead of later.

DR. ROSENBERG: Right.Yeah, so now that we have erdafitinib, which is the FGFR3 inhibitor, it has become standard of care to do sequencing now for all patients with advanced bladder cancer.The exact timing is not totally mandated, but I usually try to do it certainly when they're diagnosed with metastatic disease, and if not then, shortly thereafter, and not every insurance will pay for all different types of sequencing, and so unfortunately, there are times when it becomes an insurance issue, which is unfortunate, but there are good assays out there now that can detect a lot of these mutations, and over time, I think we'll have more drugs that are going to be targeted to particular genetic alterations in the tumor cells that we can personalize therapy even more, but we're right at the beginning of this with bladder cancer.

So, what--I've been very lucky to work with outstanding nurses all throughout my career, and I've really seen the value they bring to our practices, and I don't know that patients always appreciate that to the degree that they should, in my experience, and the nurses really are able to help not only get people into clinical trials and to avail them of their options, but as both of you mention, really kind of anticipate what might be coming and help the patient understand what side effects they might experience, where this might be going, because a lot of people don't want to ask the doctor about these things, but they may ask their nurse, you know, what's happening with my cancer, and the nurses don't always--nurses don't always feel comfortable answering those questions, but at least let the doctor know that the patient is thinking about it and bring it back so that we can all talk about it.

I've found both at MSK and the previous places that I worked, I really was very lucky to have worked with outstanding nurses along the way.Asia, how do you think that we can do--are there things that can be done on a bigger picture to better educate patients about bladder cancer, about their care, you know, it's a cancer that nobody things about, it's--you know, that--it's not a sexy cancer like--well, whatever, it's not a sexy cancer, it's not a competitive thing, but patients who don't think about bladder cancer until they get bladder cancer, usually, and so are there things that are done that are out there that we can help educate people better, in a bigger picture, as well as for our own patients.

MCCOY: Well, when you pose that question, Dr. Rosenberg, an organization like BCAN, again, really comes to mind.I had an eye-opening experience with them back in 2018, I attended by first conference, and I had the pleasure of attending a patient advocate session, where I heard Karen's story, and for me, it really hit home, because I was exposed to the patient and caregiver experience in another manner that really made me rethink my practice, and what else is it that I can offer my patients, so BCAN is like, number one on my list in terms of information, education, being connected with people who share the experience.It always hits home in a different way when someone in your shoes is a phone call away or a chat away, to kind of hold your hand and walk you through things.

Also, the patient-to-patient experience.I actually work with Dr. Rosenberg at MSK, so we've had several instances where patients are a little on the fence about participating in clinical trials or moving forward with one of the treatment options in a clinical trial, so we kind of pair them up with other patients who are currently being treated, or someone who has successfully completed clinical trial therapy to talk to them, have a one-on-one session, it's totally private, whatever they share is between the two of them, and it provides for a lot of enlightenment and encouragement, and also, I'm trying to--the word is like, right on my tongue, but I can't get it off.

DR. ROSENBERG: Peer support is very helpful.

MCCOY: Yeah, they feel more comfortable and more at ease, again, because somebody who has walked in those shoes is willing to open themselves up and be transparent and be vulnerable in order to help someone else.We are equipped, as clinicians, with all of this knowledge, and all of these tools andresources, but I have not had bladder cancer, so sometimes, I may not hit the nail on the head the way that the patient-to-patient, or patient-to-caregiver experience may hit the nail on the head, so sometimes, you've got to get up, you've got to pass the baton to someone who has been through the experience, if they're willing to do so to help a patient and to help their caregivers.

DR. ROSENBERG: I've been very lucky that I've had some people who really have given of themselves as patients to other patients, and have been very helpful to people.Obviously, it's totally voluntary for any patient to do it.

MCCOY: Totally voluntary, yes, yes, and the word I was thinking of was reassured.Reassurance is key.

DR. ROSENBERG: Yeah, it's a very scary time, and so bringing in whatever resources we can to bear on this issue really can help people.Karen, from both the patient and caregiver perspective, do you have any advice for oncology nurses you gave a little bit earlier about any other--as we're thinking about the role the nurses play in the patient's journey?

SACHSE: Well, I just have to echo what Asia said about making BCAN available to the patients, and all different facets of the support that BCAN can offer.The other thing is, not all of the bladder cancer treatment is within the oncology department.Sometimes, it varies from center to center, and to be able to tap into whatever support and resources the oncology department has, and make those available to patients with bladder cancer, I think could be huge.

Things like exercise, things like nutrition support, mindfulness, meditation, I guess I want to say also, don't forget all those complementary therapies.You know, my husband was--he was carrying around one of those aromatherapy--a little atomizer, and he didn't want to have to take another pill, and it really helped to tamp down his nausea enough so that he could make it through the day.I mean, he obviously he obviously had to take antiemetics, but all these things, every little complementary therapy helps just a little, and certainly, to be able to talk to the caregivers, and, you know, see how they're doing, and what kind of support you can offer, maybe it's an appointment with a social worker, or an appointment for therapy, all of those can really make a huge difference in the journey of a patient.

MCCOY: Yeah, mental well-being is a big piece of it, and also, financial well-being.Like, that's the last thing that you want to think about while you're going through therapy for your diagnosis, so whatever we can do to kind of cut back on costs, or help to supplement, whether it be transportation or supportive medications, like if a patient is nauseous, and they have really high copays, or need a prior authorization for an anti-nausea medication, the oncology nurses, clinical trials nurses are jumping in to do whatever it is that we can do to help subset cost and decrease the financial burden.

DR. ROSENBERG: Yeah, financial toxicity is a huge problem with a lot of these new standard medicines, unfortunately, not just in bladder cancer, but in all of cancer medicine, and the societal will to tackle it is not quite there, and I'm not sure what the right answer is, personally, but it really is an issue that we have to be mindful of with our patients.

So, I think we're about ready for our Q&A portion, and we're going to get--they're going to be sending me questions that I will either answer or have Asia or Karen weigh in on.So, one question that comes up for me is, what is the average length of time to be on chemotherapy or immunotherapy, and that's a really interesting question.So, the first line chemotherapies generally last between four and five or six months, so that platinum chemotherapy is usually in that range, and immunotherapy is a tough question.

Some studies used immunotherapy for two years and then stopped, so if you did well, and you make it to two years, you're probably going to continue to do very well, and then you might stop immunotherapy.There are other studies with other drugs where they kept people on indefinitely as long as it was working, and as long as side effects weren't bad.

As a practical matter, I talk to patients about two years and kind of judge it when they get there personally for immunotherapy, but it is an area that is actually being tested in clinical trials, and there are some upcoming trials that are going to be looking at the duration of immunotherapy, and if you have a spectacular response, maybe you don't need two years, maybe you need six months, and so we'll be--you know, more to come on that as time goes on.

Asia, are there any symptoms of bladder cancer that patients should be thinking about, or Karen, other than blood in the urine, are there things that you hear from patients that they should ring a bell?

MCCOY: Well, I'll start it off, and I'm sure Karen will back me up and throw anything in there that I may have left out.So, along with sometimes seeing blood in the urine, there can be pain in the back area where your kidneys are, there can be changes in the appearance of one's urine, so sometimes it can have a foul odor, or it can look different than usual, so it can be kind of like, dark, tea-colored, be kind of frothy looking, almost like if you're getting beer from a tap.There can be frequency of urination, there can be urgency of urination, there can be bladder pain or bladder spasming.There can also be pain in the abdominal area.Karen, can you--anything else?

SACHSE: Yeah, I was just going to say, I know - - , I had recurrent urinary tract infections for two years before I was diagnosed, but along with that was this pain.It wasn't really a pain, it was like a pressure when I was urinating, and I think for women, you know, so many of our symptoms get it passed off as gynecologic, and it doesn't always get the provider to thinking about a cancer diagnosis to do the right types of testing.

DR. ROSENBERG: So, it's a very common story, unfortunately, with women, with bladder cancer, that they seem to be delayed compared to men, often, and that suddenly, like, a light bulb goes off, oh, maybe this is not just another urine infection, maybe this is actually something else, and getting them to the urologist with symptoms that don't quite fit or are persistent is something that's important to remember.Unfortunately, it is a story I hear too many times.

I think it's unfortunate that most patients have no symptoms, or many patients have no symptoms.Maybe not most patients, but many patients have no symptoms when they're diagnosed with bladder cancer, often when it's localized, and so it's a--it can be very frustrating.People are like, I feel great, I've never had any problems, why--you know, my doctor found something in my urine, and here I am, and so wrapping your head around that as a patient, I know is very tough at times, unfortunately, for people.

So, one question that has come up in the chat is around things that we might modify or standards that may change for older patients, geriatric patients, people who--and my own experience has been that age is not just a number, and there are people in their 80s who physiologically, physically, are very, very fit and in great shape, and medically, are like they're in their 60s or 70s, and then there are other patients who are in their 80s who are really in their 80s, and you have to treat people differently in terms of the types of treatments they might take, because you don't help the patient if you've hurt them with the treatment, and get them to a point where they can't take more treatment, and so it's something that as a team, we consider very carefully, is this an appropriate option for a patient, and for example, cisplatin is a tough treatment if you're in your 80s, but that's not a blanket statement for every patient in their 80s, and it can be a very tough treatment for someone who's not very healthy in their 60s as well, and so it goes in different directions, and so there isn't--I wouldn't say there's a standard approach, but really, you have to take in the comorbidities, the other medical problems, and the general condition for patients.

Another question that comes up is whether there's--is there any data that can tell you how long a remission might last in a patient who has immunotherapy, and if someone has a great response, how long will it continue, and so for an individual patient, we don't have a lot of information, but we can learn from the clinical trials, where the durations of responses for patients with immune checkpoint drugs, like the PD-1 inhibitors, PDL-1 inhibitors, those responses can last for years sometimes.

I have patients who started treatment on the first clinical trials for immunotherapy in advanced bladder cancer who are alive and well, and even off treatment, because they have had dramatic and sustained remissions, and these are people, frankly, who wouldn't be alive today, if it hadn't been for the fact that they managed to get on one of these trials, and so our ability to predict outcomes is something that remains a challenge, and there are actually something that we call non-therapeutic clinical trials, where we're actually asking patients for permission to study the genes of their cancer, or proteins in their blood, and other things that are not meant to treat them, but to help us understand the disease, so that we can prognosticate, because one of the goals will be to say to a patient, if I give you this treatment, it's not going to work, but if I give you that treatment, it'll work really well, and we're not quite there yet.

We're probably 5-10 years from that in reality.We can do it with certain things, but not regularly, and so those are very important types of trials, that the only thing you may have to give is a couple of vials of blood at the visits in addition, as well as the--talking to a research coordinator or giving access to the tumor tissue that you have already had removed that's sitting in a pathology department somewhere, so those are critical types of trials that frankly, aren't much skin off your back, from a patient perspective, at least from my perspective as a scientist, we're not giving you anything, we're trying to learn.

Another question, Asia, what do you recommend for patients with nausea, both--you know, we use a lot of anti-nausea medicines.Are there other things in addition that sometimes help people?

MCCOY: Oh, sure.There are quite a few things that we can do from a non-medication standpoint, and actually prefer to, depending on the treatment that a patient may be receiving, so remaining in an upright position for 30 to 60 minutes post eating a meal or having a beverage, that allows for the natural flow of food and fluid through the gastrointestinal tract, and it cuts down on your chances of, like, dry heaving, or having any nausea or actually vomiting.Utilizing ginger candy, if you can tolerate it, sour candies, if you can tolerate it, it kind of changes the palette and cuts down on saliva production on the inside of the mouth, therefore cutting down on nausea.

Sometimes, patients will develop taste sensitivity and smell sensitivity, depending on what kind of treatment they're on, so if there are any trigger foods or trigger beverages that you know, if you smell it, if you look at it, if you taste it, it's going to make you nauseous, or it's going to make you vomit or make you queasy, you really, really want to stay away from those things.

Also, acupuncture sometimes can help, so we can very well make a referral for our patients through our integrative medicine service.Also, massage is sometimes helpful, aromatherapy, things along those lines that don't involve [crosstalk].

DR. ROSENBERG: Karen, did you want to add anything?

SACHSE: No, I mean, I already talked about the aromatherapy.We--my husband really liked ginger tea.It was just very soothing.I guess the thing I also want to say is that there are so many different antiemetics that if one is not working, or a combination is not working, make sure you let your provider know, and then--because there are others that can be prescribed.

DR. ROSENBERG: There are--and that's also where palliative care, sometimes symptom management teams can be helpful.If things are getting complicated, and the usual stuff is not helping.So, one question coming from the audience is, what do we do about hyperphosphatemia, and that's related to really one class of medicines, which are the FGFR inhibitors, erdafitinib being the only one that's FDA-approved at this point.There's a bunch of others in clinical trials, presumably will get approved.

We talk to patients about diet modification, although a low phosphorous diet is a hard diet to be on, I've found, from patients, and so a low phosphorous diet, and then there are medications that are phosphate binders, that you take and they basically sop up any phosphorous in your intestinal tract, and kind of suck it out of the body and keep it from getting very high.Different medicines, different FGFR inhibitors, seem to cause different levels of this high phosphorous level.The concern is that it can crystallize, cause crystals to form in the body if the phosphorous gets too high, and that can cause problems in your kidneys and in your joints and in your muscles, and so we want to really--we want to keep them under reasonable control, and so those medicines, the phosphate binders, are often used to try to keep them in more manageable levels.

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