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Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers

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Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers from Patient Empowerment Network on Vimeo.

What are key myelofibrosis barriers and solutions for healthcare providers? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss common obstacles to myelofibrosis care and methods they’ve used to overcome barriers including collaborative care tips.

See More from EPEP MPNs

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Expert Insights on Overcoming Barriers to Myelofibrosis Care

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 HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

 Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Transcript:

Dr. Nicole Rochester:

Dr. Palmer, can you speak to some of the obstacles or barriers faced by healthcare providers themselves when treating myelofibrosis patients?

Dr. Jeanne M. Palmer:

I think one of the challenging pieces, you know, I know in Arizona, we have a pretty big catchment area, because there’s not only the Phoenix metropolitan area, but there are a lot of smaller communities scattered throughout Arizona. And I think one of the issues that we have is, let’s say I want to start somebody on a new medication that potentially has a side effect of anemia or something. Being able to manage them remotely is difficult, because a lot of times they may require a blood transfusion. Can they even get a blood transfusion where they’re at? Can they afford the 5-hour drive down to Phoenix to get that? So I think sometimes, even access to simple things, well, I guess it’s not that simple, but things like blood transfusions can be hard. Fortunately for labs, you’re often able to get them most places through various Labcorp, Quest, et cetera. But sometimes any type of infusional treatment can be really, really hard to get.

Dr. Nicole Rochester:

Thank you. Do you have anything to add, Dr. Rampal, with regard to barriers faced by providers?

Dr. Raajit K. Rampal:

No, I actually think that’s an important, that’s a really important thing. Because it depends on your area of the country and what access to resources patients have locally. If we’re thinking about this as sort of a hub and spoke model, that may be the outdated model. In other words, it’s not that people can afford to, you know, from a financial perspective or a time perspective, come into the major center and then go back. They need to get access to care locally, but you have to have the infrastructure, the healthcare infrastructure, if you will, to deliver that care. And that’s a difficult problem in many parts of the country.

Dr. Nicole Rochester:

Dr. Rampal, can you speak to unforeseen or maybe outdated practice-related barriers that may hinder your work and that of your colleagues with regard to myelofibrosis treatment?

Dr. Raajit K. Rampal:

Yeah, I guess my broad answer to this is that things are changing rapidly and the pace of change is accelerated. In other words, when we think about myelofibrosis, the treatment paradigm probably, if you think about the last 15 years, in the early part of that, things were kind of relatively static and now they’re not as new knowledge emerges, as new treatments emerge. And the challenge here, again, speaking in general terms is, as Dr. Palmer pointed out, this is a rare disease. It’s not something that’s frequently seen by physicians in the community. So how do you keep people up to date on something that is not the majority of what they do? It’s a very small percentage of what they see and do. And that’s an ongoing challenge. And I’m not sure there’s any perfect solution to that except for education. It’s just a question of how do you deliver that in a time-effective manner so that people can devote some time to getting up to date? But it is ultimately a good problem that things are changing rapidly.

Dr. Nicole Rochester:

Absolutely. And, Dr. Palmer, do you have any solutions or actions or things that healthcare providers can do as this treatment landscape rapidly evolves?

Dr. Jeanne M. Palmer:

I think it’s a real challenge because even when we look at sort of the dogma of like, well, what’s the response criteria? I mean, when you’re thinking of a lot of like solid tumors, you think, okay, did the tumor shrink a certain amount? Did the tumor go away? With myelofibrosis, when we think about even response criteria, it’s really challenging. So I think I agree education is part of it, and it’s trying to figure out how to distill down the really important components of how do you manage these patients day-to-day? We can talk about the COMFORT study and the MOMENTUM study and everything else all we want to, that tested, were major studies that tested the drugs that we use, but then the nuances of how to manage them day-to-day is something that I think we could probably improve upon how we educate.

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Expert Insights on Overcoming Barriers to Myelofibrosis Care

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Expert Insights on Overcoming Barriers to Myelofibrosis Care from Patient Empowerment Network on Vimeo.

How is myelofibrosis care impacted by barriers, and what are solutions for healthcare providers to overcome them? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss different access barriers that impact quality of care and ways that healthcare providers can help close disparity gaps for patients.

See More from EPEP MPNs

Related Resources:

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers

 HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

 Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Transcript: 

Dr. Nicole Rochester:

So we’re going to start by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here. And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this.

And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available.

Fortunately, this is a space where new drugs are coming pretty rapidly. So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral. Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place in like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

 

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HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

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HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers from Patient Empowerment Network on Vimeo.

Explore the complex challenges and barriers in myelofibrosis care with Dr. Raajit K. Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne M. Palmer from the Mayo Clinic. Gain insights into therapeutic inertia, effective strategies for overcoming care barriers, and enhancing patient-centric care to improve myelofibrosis outcomes.

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Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms?

 Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. In this healthcare provider roundtable, we are discussing breaking through myelofibrosis practice barriers.

We’re going to talk about the nuanced challenges and practice barriers in myelofibrosis care. How do patient socioeconomic factors impact treatment access? We will look at gaps in the field and overcoming practice barriers such as lack of awareness, outdated practices, and therapeutic inertia, while also addressing solutions to enhance patient-centric care in myelofibrosis for improved patient outcomes. 

It is my privilege to be joined by Dr. Raajit K. Rampal of Memorial Sloan Kettering Cancer Center. Dr. Rampal is a clinical translational investigator whose research focuses on the genetic events that contribute to the development and progression of leukemia and myeloproliferative neoplasms. Thank you so much for joining this EPEP program, Dr. Rampal. 

Dr. Raajit K. Rampal:

Thanks so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

It’s also an honor to be joined by Dr. Jeanne Palmer, hematologist at Mayo Clinic. Dr. Palmer’s interest is in identifying novel targeted therapies for patients with myeloproliferative neoplasms. She strives to offer innovative therapies to patients in all stages of their disease through clinical trials. Thank you so much for joining us, Dr. Palmer.

Dr. Jeanne M. Palmer:

Thanks for having me.

Dr. Nicole Rochester:

So we’re going to start today’s discussion by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here.

And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this. And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available. Fortunately, this is a space where new drugs are coming pretty rapidly.

So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral.

Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

Dr. Nicole Rochester:

Thank you so much, Dr. Rampal. Well, we’ve been talking about the barriers that patients face. Dr. Palmer, can you speak to some of the obstacles or barriers faced by healthcare providers themselves when treating myelofibrosis patients?

Dr. Jeanne M. Palmer:

I think one of the challenging pieces, you know, I know in Arizona, we have a pretty big catchment area, because there’s not only the Phoenix metropolitan area, but there are a lot of smaller communities scattered throughout Arizona. And I think one of the issues that we have is, let’s say I want to start somebody on a new medication that potentially has a side effect of anemia or something.

Being able to manage them remotely is difficult, because a lot of times they may require a blood transfusion. Can they even get a blood transfusion where they’re at? Can they afford the 5-hour drive down to Phoenix to get that? So I think sometimes, even access to simple things, well, I guess it’s not that simple, but things like blood transfusions can be hard. Fortunately for labs, you’re often able to get them most places through various Labcorp, Quest, et cetera. But sometimes any type of infusional treatment can be really, really hard to get.

Dr. Nicole Rochester:

Thank you. Do you have anything to add, Dr. Rampal, with regard to barriers faced by providers?

Dr. Raajit K. Rampal:

No, I actually think that’s an important, that’s a really important thing. Because it depends on your area of the country and what access to resources patients have locally. If we’re thinking about this as sort of a hub and spoke model, that may be the outdated model. In other words, it’s not that people can afford to, you know, from a financial perspective or a time perspective, come into the major center and then go back. They need to get access to care locally, but you have to have the infrastructure, the healthcare infrastructure, if you will, to deliver that care. And that’s a difficult problem in many parts of the country.

Dr. Nicole Rochester:

Absolutely. Wonderful. Well, you talked about something maybe being outdated. That’s a perfect segue to our next conversation. And so I’ll start with you this time, Dr. Rampal. Can you speak to unforeseen or maybe outdated practice-related barriers that may hinder your work and that of your colleagues with regard to myelofibrosis treatment?

Dr. Raajit K. Rampal:

Yeah, I guess my broad answer to this is that things are changing rapidly and the pace of change is accelerated. In other words, when we think about myelofibrosis, the treatment paradigm probably, if you think about the last 15 years, in the early part of that, things were kind of relatively static and now they’re not as new knowledge emerges, as new treatments emerge. And the challenge here, again, speaking in general terms is, as Dr. Palmer pointed out, this is a rare disease. It’s not something that’s frequently seen by physicians in the community.

So how do you keep people up to date on something that is not the majority of what they do? It’s a very small percentage of what they see and do. And that’s an ongoing challenge. And I’m not sure there’s any perfect solution to that except for education. It’s just a question of how do you deliver that in a time-effective manner so that people can devote some time to getting up to date? But it is ultimately a good problem that things are changing rapidly.

Dr. Nicole Rochester:

Absolutely. And, Dr. Palmer, do you have any solutions or actions or things that healthcare providers can do as this treatment landscape rapidly evolves?

Dr. Jeanne M. Palmer:

I think it’s a real challenge because even when we look at sort of the dogma of like, well, what’s the response criteria? I mean, when you’re thinking of a lot of like solid tumors, you think, okay, did the tumor shrink a certain amount? Did the tumor go away? With myelofibrosis, when we think about even response criteria, it’s really challenging.

So I think I agree education is part of it, and it’s trying to figure out how to distill down the really important components of how do you manage these patients day-to-day? We can talk about the COMFORT study and the MOMENTUM study and everything else all we want to, that tested, were major studies that tested the drugs that we use, but then the nuances of how to manage them day-to-day is something that I think we could probably improve upon how we educate.

Dr. Nicole Rochester:

Thank you. So as we move on to our final topic, we’re going to start talking about collaborative care. You all have spoken about this being a rare disease, the need for expert care, the fact that not everyone has access to that expert care. And so the reality is that it’s going to take more than just experts like yourself in order to manage these patients. And so, Dr. Palmer, I’m going to start with you. What are the key components of an effective collaborative care ecosystem for myelofibrosis? And how can healthcare providers integrate these components to ensure comprehensive patient care?

Dr. Jeanne M. Palmer:

Well, I think one of the most important things is really making sure you’re having conversations with the patients, are able to sort of elucidate what’s really important to them and how they’re feeling. I think many patients actually are very aware of things that they want to or don’t want to do. And so, and then in a disease like this one, where there are lots of different options, there are also just nuances in the way you sort of treat things like, okay, do you want to take this side effect or that side effect? Or how do you want to approach this? Being able to have those conversations to really get their input on it is very important.

That’s one of the reasons I really enjoy treating this disease is because it’s not so regimented in how you do it. It becomes really a conversation, understanding how the patient’s feeling, understanding the side effects that they’re having, so you can better determine how you should continue with the therapy.

Dr. Nicole Rochester:

Wonderful. I appreciate that. And I appreciate that you brought in the patient perspective when we’re speaking about collaborative care, because, of course, they need to be involved in their part of their medical team. Dr. Rampal, what about the healthcare providers? How can you cultivate a collaborative ecosystem with other healthcare providers as you all provide care for myelofibrosis?

Dr. Raajit K. Rampal:

Part of my advice here is simple, which is to pick up the phone. And I’ll tell you why I put it that way. I think that what happens…and this is something I always emphasize to our trainees, because I don’t think this is something that’s taught. This is, as they call it, a soft skill. But there is, I think, a tendency, at least in academic centers, for people to want to ensconce themselves in the ivory tower. And that doesn’t help, because you have to communicate with the people taking care of the patients.

And the simplest way to do that is to pick up the phone and call the referring doctor who they’re seeing in the community, and say, “Listen, I saw your patient. Here’s what I think. I’d like to share the care with the patient. I can see them every six months. Please keep me updated. This is my cell phone number. Call me if there’s a problem.” That, to me, has been the most simple, effective tool to build collaborative partnerships with physicians in the community. And it’s not something that I think is taught, but we have to do that. We have to break down these barriers between specialty care or academic care and community care. I think that’s one of the best things we can do to help patients get the care they need.

Dr. Nicole Rochester:

And what a simple tool, just picking up the phone. We often try to create complex technological solutions. And you’re right. It’s just as simple as picking up the phone and having that one-on-one conversation. So thank you for adding that. Dr. Palmer, how can multidisciplinary teams be best utilized to improve outcomes in myelofibrosis care?

Dr. Jeanne M. Palmer:

So it always takes a village to treat a patient. I think that making sure that you have…that your social workers or case managers have good access to different resources to help with patients. As I said, one of the biggest challenges is paying for these drugs. So having a good team of social workers or case managers who are really able to tap into resources, so patients can get access to these drugs is really important. Making sure that you have good nursing support.

One of the things that’s really important is I can ask my nurse, “Hey, look, can you check in on this person in the next few weeks to see how they’re doing with their new medication?” And even having good APPs. I’m very fortunate to have a couple of APPs I work with who are very knowledgeable about MPN. So I don’t worry that if I’m not there to see the patient that somebody else who’s seeing the patient won’t be able to assess them in a good way. So I think having that whole cadre of people around you to support the care of that patient is critical.

Dr. Nicole Rochester:

Absolutely. And I appreciate that you lifted up not just the medical providers, but the case managers as well, particularly with some of the challenges that we’ve been talking about today. And, Dr. Rampal, do you have any specific solutions for how to achieve seamless coordination among the different specialists that may be involved in the patient’s care?

Dr. Raajit K. Rampal:

No. I think it’s a difficult problem. I’m not sure there’s a clear solution. Even the simple thing of medical record systems not talking to each other; people use different medical record systems, those things all create barriers. I think that…the only thing that I think is worthwhile is making sure that you’re actively managing this communication.

In other words, when you write a note in your electronic medical system, you’re assuming that it’s getting sent and being read by the referring physician and all of that, but that’s a passive way of thinking about this. And one has to be active. One has to make sure that if there are key things to be communicated amongst all of the people taking care of a patient, as I said earlier, a simple thing is pick up the phone or make sure you have communication about your ideas and plans for the patient so that the other people, providers involved in that patient’s care are all aware of that.

Dr. Nicole Rochester:

Thank you so much. Yeah, the electronic medical record does not sometimes live up to those expectations, which takes us back to what you said earlier, picking up the phone. It’s time to wrap up our roundtable. And I must say I have enjoyed this conversation so much. And as we bring this program to a close, I’d love to get closing thoughts from each of you.

And so I’ll start with you, Dr. Palmer. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening and watching this program around how we begin to eliminate barriers in myelofibrosis care?

Dr. Jeanne M. Palmer:

Well, I think one of the key factors here is to make sure that you understand what you know and then understand what you don’t know. And there are lots of us out there who are very willing to help and support in any way we can. I think this is a really challenging disease to treat. Speaking as someone who started to treat it mid-career, it was something that I realized that it’s not just about reading papers, there are a lot of nuances to it. So really not having the fear of asking.

Also, to really tap into patient advocacy organizations. There are a number of really good organizations that provide excellent education opportunities for patients and making sure that patients are aware of those so that they can be able to do their own Google search, but not necessarily in a non-constructive fashion. So really tapping into those patient advocacy groups is really important.

Dr. Nicole Rochester:

Wonderful. And what about you, Dr. Rampal? What’s a closing takeaway message for our audience?

Dr. Raajit K. Rampal:

I think open lines of communication. I think that from the perspective of providers in the community, we want to know that you have questions. We want to make ourselves available to answer those questions. And so I would much rather be inundated with questions specific to a patient’s care than not to hear from somebody.

And then I think from the specialist side of things, we have to make ourselves available to address these questions and make ourselves accessible. So I think in as much as possible, opening up lines of communication is one of the keys to overcoming some of these barriers. Obviously, there are systemic barriers here that require systemic solutions, but on a granular level I think those are the things we can do.

Dr. Nicole Rochester:

Well, I want to thank you both. Thank you, Dr. Palmer. Thank you, Dr. Rampal. As always, this has been a very informative conversation. We talked about many of the barriers to myelofibrosis care. We talked about some of the systemic and structural barriers, but we’ve also talked about barriers that healthcare providers can overcome.

And ultimately, the take-home message for me is communication. Communication with our patients in a way that they can understand, in a way that they like to receive information, having respect for cultural differences, and communication and collaboration with each other. So again, thank you both for all of the information that you shared. And thank you all for tuning in to this Empowering Providers to Empower Patients Patient Empowerment Network Program. I’m Dr. Nicole Rochester. Thank you for watching.

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What To Do When Newly Diagnosed With Follicular Lymphoma?

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What To Do When Newly Diagnosed With Follicular Lymphoma from Patient Empowerment Network on Vimeo.

What should newly diagnosed follicular lymphoma patients take as next steps after diagnosis? Cancer patient Lisa Hatfield and Dr. Matthew Matasar from Memorial Sloan Kettering Cancer Center share advice for patients to be proactive in their care.

See More from START HERE Follicular Lymphoma

Related Resources:

What Are the Signs It Is Time to Treat Follicular Lymphoma

 How Can I Manage Anxiety After Follicular Lymphoma Diagnosis

 Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Transcript:

Lisa Hatfield:

When you are first diagnosed with follicular lymphoma, you may not know what to do or what next steps to take. Dr. Matthew Matasar from Memorial Sloan Kettering Center shares what he encourages all his patients to do.

Dr. Matthew Matasar:

Everybody should have access to a second opinion pathology review.  This is independent of what the doctors are giving you advice in taking care of the illness, but just making sure that the diagnosis itself is correct. We know that the diagnosis of lymphoma is a tricky one for pathologists, particularly if they’re not pathologists that are seeing lymphoma under the microscope every day of the week. And when you go for a second opinion pathology review by having the slides sent to a major academic center, there’s a possibility that the diagnosis will be changed or revised in a way that’s meaningful meaning that it would lead to different recommendations for how to take care of your illness.  

Lisa Hatfield:

As Dr. Matasar says, you can ask your physician or community oncologist to send your diagnosis test results to another institution, particularly one with a lymphoma expert. Let’s listen as Dr. Matasar continues: 

Dr. Matthew Matasar:

You’re entitled to a second opinion medical review as well and going to see an expert in lymphoma if your first opinion was with a community oncologist or somebody referred by your primary care doctor who may not have singular expertise in these illnesses, can be helpful.

Lisa Hatfield:

The lymphoma expert that you seek a second opinion from may agree with your local oncologist and suggest collaborating with him/her on your care OR may suggest an alternative such as newer medications your local oncologist may not be up to date on or offer clinical trials. When you have this second opinion consult, be sure to ask questions like “Are there alternatives to the therapy my local doctor or you are suggesting?”, “What is the difference between my options?” and “Are there clinical trials or new drugs that I might be eligible for?”  We’ll go back to Dr. Matasar for his last recommendation now: 

Dr. Matthew Matasar:

Let your doctors know who you are, how you view things, how you like to receive your healthcare information. Are you a big picture or a detail person, and what are your priorities so that they can best match their recommendations to who you are as an individual, as a person, as a member of a family in the community so that they can give you the most personalized and appropriate recommendations possible.

Lisa Hatfield:  

By sharing with your doctor a little bit about you and your personality, you can set yourself up for success to get the best recommendations as possible. We hope these tips help you feel empowered as you begin your follicular lymphoma journey! 

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RuthAnn Gordon: Why Is It Important for You to Empower Patients?

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RuthAnn Gordon: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can patients be empowered, and why is it an important part of their care? Director of Clinical Trials Nursing RuthAnn Gordon from Memorial Sloan Kettering Cancer Center shares her expert perspective.

See More from Empowering Providers to Empower Patients (EPEP)

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 Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

RuthAnn Gordon:

Thank you for the question. I think one of the most important things we can do to empower our patients is to educate them. They really need to be prepared for what they can expect when they’re on their journey and also what their responsibilities are and what the clinician’s responsibilities are. What are going to be the expectations? And outlining that in a format that they’re comfortable with so considering what their literacy is, how they like to learn is important in those empowering conversations. Learning about the patient, building that relationship with them so you understand their learning styles, so you understand what they might need more direction on or more education on is  really important. 

And the reason why all of those things are important is because we want our patients to feel like they’re being heard. We want them to feel like no matter how big or small the question that they should ask it, that we are in a place to support them and help them and that we want to hear their questions. And we want to educate them. And we want them to feel like they have the best support that they need, the most appropriate support that they need in order to be educated and empowered and informed and a part of the process.

It’s important to make your patient a part of the process. It is we are in this, we are doing this. What do you need? What can I do to help? And really giving them that confidence. You understand what their needs are, and you want them to speak up and that it is safe to speak up, and that your questions will be heard here. I think that makes patients feel empowered, and it also gives them more self-confidence. And with confidence comes so many other healing things. And so I think it’s really important to help them with their processing with everything that’s going on is to empower them and educate them. And educating them will empower them.

Evolving Myeloma Clinical Trial Discussions Amid a Dynamic Treatment Landscape

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Evolving Myeloma Clinical Trial Discussions Amid a Dynamic Treatment Landscape from Patient Empowerment Network on Vimeo.

How can discussion about myeloma clinical trials continue to expand? Experts Dr. Beth Faiman from Taussig Cancer Institute and RuthAnn Gordon from Memorial Sloan Kettering Cancer Center discuss how clinical trial communication has changed and some specific points of communication that are helpful.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

What Guidance Can Help Nurses With Clinical Trial Communication

 HCP Strategies for Navigating the Pre-trial Eligibility and Informed Consent Process

 HCP Roundtable: Best Practices for Talking About Clinical Trials With Myeloma Patients

Transcript:

Dr. Nicole Rochester:

Dr. Faiman, as the myeloma treatment landscape continues to expand thanks to clinical trials, how are clinical trial conversations evolving, and what do you feel should be top of mind?

Dr. Beth Faiman:

That’s an excellent question. Over 20 different drugs are available in various combinations. And so we talked about sequencing very briefly about having patients that have access to clinical trials, making sure they’re not exposed to this class, or maybe they needed to be exposed to this class of drug before they can get drug B, for example. And so sharing mutual information through shared decision-making, again, the patients sharing information and goals of care, the provider and healthcare team mutually sharing information, bring in your social worker or pharmacist, etcetera, and then you can mutually agree on a treatment for the patient. And so that is something we did not have 20 years ago. There were very few effective agents.

I like to remind patients when we provide clinical trial consent forms, that the language is written by lawyers, but it’s intended to protect you. I overemphasize that this is voluntary, and you can withdraw your consent at any time. But I try to go back and highlight why there’s stringent, plus or minus one day, maybe you can’t take off three days to go on a holiday weekend, because we really need to dose this drug on that day and obtain this blood information. So again, having the patients understand what’s involved in the clinical trials and then being able to provide information.

I like to also offer handouts. So the International Myeloma Foundation has clinical trials and diversity handouts. And then another one that I really like is by the FDA that describes the importance of clinical trials. I give that to everybody. So at diagnosis, if you’re on a standard care treatment, you’re not receiving a clinical trial. Everybody that comes into my office that I see for myeloma amyloidosis and related disorders, I would say, “You are a candidate for clinical trial now, but if I or somebody else does not involve you or ask you to participate, then ask us. Just ask us about clinical trials.” I even have a pen that says “Ask me about clinical trials” so that everybody can see it.

Dr. Nicole Rochester:

I love the idea of a pen. Wonderful. Well, let’s move on to how to educate and mentor nursing professionals. Both of you are nursing professionals, and you’ve clearly highlighted in this program so far the importance of the role of nurses in this clinical trial process. So, Ms. Gordon, I’m going to go to you. We know that one significant challenge for some providers is actually initiating conversations about clinical trials and also determining the appropriate timing. Can you speak to whether care variation may pose challenges in community hospital settings, perhaps compared to academic hospitals?

RuthAnn Gordon:

Yeah, absolutely. I think one of the most important things about when to talk to the patient is every time, anytime, right? I think that we should be asking them if they’re interested in clinical trials. If they haven’t been engaged in that, we should be talking to them about, “You know, there’s maybe a chance at some time in our partnership together that we will be talking about clinical trials.” And introducing that up front I think is really important so that we don’t leave clinical trials sort of as a last thought and the patient have that feeling. And I think that for the community setting, that’s one of the things that may be a challenge, is because it is hard to put a patient on a clinical trial and run it from a community setting.

So it’s, how do we give them the support and resources so that it’s not so hard and that they do offer it and talk to their patients as much as possible about it? And I feel like that’s what we need to do more with these partnerships with academic settings, is that we have to give them support so that it’s not so hard, and that that clinical trials first of mind to them when they’re planning care for their patients.

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HCP Strategies for Navigating the Pre-trial Eligibility and Informed Consent Process

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HCP Strategies for Navigating the Pre-trial Eligibility and Informed Consent Process from Patient Empowerment Network on Vimeo.

How can myeloma patient communication about clinical trials be improved? Clinical trial nursing director RuthAnn Gordon from Memorial Sloan Kettering Cancer Center discusses clinical trial eligibility determinations and the consent process for patients.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

What Guidance Can Help Nurses With Clinical Trial Communication

 Evolving Myeloma Clinical Trial Discussions Amid a Dynamic Treatment Landscape

 HCP Roundtable: Best Practices for Talking About Clinical Trials With Myeloma Patients

Transcript:

Dr. Nicole Rochester:

Ms. Gordon, you’ve been doing this for a long time. In your experience, what are tried and true strategies that healthcare providers can implement to effectively communicate with their patients about clinical trials when speaking to pretrial eligibility determination and the consent process specifically?

RuthAnn Gordon:

Yeah. Thanks for the question. I think that an important thing whenever we’re talking to our patients is to really understand where they are with understanding and how they learn. So it’s important for us to know what their health literacy is so that we’re making sure that we’re talking in a language that they can understand and using words that are appropriate. And so that’s key. Clinical trials have a lot of comprehensive and complex assessments that are needed for pretrial eligibility, right?

So I think it’s really important to make sure that we are being transparent as to what they can expect. We don’t want them to have surprises later on and then not feel like they want to continue with that process. So I do recommend to my providers and my research nurses, sometimes get out the hard stuff up front. Know if they’re going to be there for 12-hour PKs. Let them know. It shouldn’t be a surprise. And I think that that really helps patients. First, they get involved in the process, they know what to expect, and you can really have more confidence in their adherence.

The other thing is to allow time for the conversations, right? We need to allow time for our patients to ask questions. And the consent process can be lengthy. There’s a lot on the document. Sometimes it’s quite long. So you want to make sure that they’re in a state of mind to have the conversation, that you allow time for questions, and that you make it an exchange between the two of you. It’s a dialogue. It should be.

And you should come with understanding where they’re at; understanding a little bit about what’s going on behind the scenes, right?What’s happening at home is important as you’re talking about pretrial eligibility, as you’re talking about what they can expect on trial, just to get a full picture of them. So I think that those to me are very helpful. Providing take-home information to the patient so they have something to reflect on later is also really important, because they’re not going to grasp everything in that one session. And consenting is like an ongoing process, right? You have one conversation, you probably have 10 more.

Dr. Nicole Rochester:

That is wonderful. Thank you so much for sharing that. And I really appreciate that both of you have highlighted the importance of health literacy, and meeting our patients and families where they are and making sure that they understand, and this idea that it’s a continuum: That there may be multiple conversations that will be necessary.

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How Do Nurses and Allied Professionals Help in Myeloma Clinical Trial Settings?

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How Do Nurses and Allied Professionals Help in Myeloma Clinical Trial Settings? from Patient Empowerment Network on Vimeo.

How are myeloma clinical trials aided by nurses and other patient advocates? Experts Dr. Beth Faiman from Taussig Cancer Institute and RuthAnn Gordon from Memorial Sloan Kettering Cancer Center share how others help with patients considering clinical trials and those in clinical trials.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

How Do Research Nurses Assist Myeloma Patients on Their Journey

 Understanding Unique Barriers Faced by Myeloma Research Nurses

 Understanding Distinct Barriers to Myeloma Clinical Trial Participation

Transcript:

Dr. Nicole Rochester:

Dr. Faiman, we know that patients with myeloma are living longer, and they’re dealing with a different set of challenges than perhaps they previously encountered. So can you speak to the critical role of nurses specifically in the myeloma trial setting today?

Dr. Beth Faiman:

Yeah, absolutely. You know, I must first start by saying that the successes in the treatment of multiple myeloma can be owed to the brave participation of the patients and the caregivers. So let’s not forget about the caregivers to support the patients with clinical trials. And I started as a clinical trials nurse in the 1990s managing these patients, and a nurse practitioner in 2002. And now my role is different also as a researcher.

And so I have seen firsthand all these drug developments. And so the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important. And how can we support our patients who are now living a longer life span with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life? I know we have a very robust program to talk about later on, but I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.

Dr. Nicole Rochester:

Thank you. Ms. Gordon, we know that diversity in clinical trials is lacking. Certainly there have been lots of reports about that. It’s gotten increasing attention over the last few years. There’s now regulations related to that. And while things are changing, we have a long way to go. And it’s also important that we celebrate the wins that we’ve achieved along the way. So my question for you is, do research nurses play a role in increasing diversity in clinical trials and also in trial innovation?

RuthAnn Gordon:

Absolutely. I think that one of the things that is important is community outreach, right? And so we have a lot of opportunities for research nurses. Well, as in large academic settings, a focus needs to be on exploring ways to have partnerships with our community organizations. And once those connections are established, the research nurses can play an extremely pivotal role in ensuring that we’re not only at point-of-consent educating, but way before that, getting involved in pre-screening activities in order to ensure that we’re looking at a diverse population.

And also to help with providers that are in the community that may have more advanced questions, and having the nurse being partners with those clinicians in order to help them get through the questions that they might have in a more timely manner. And so the research nurses that are attached to those academic centers have a pivotal role in ensuring that the community centers have support.

And in doing the pre-screening, I think is an important feature of having the research nurse also be involved in that process. And so I think that…we know that the community has needs, and we know that we need to increase that access. So looking at opportunities to partner with those settings, to me, with the research nurse, is really critical, and I think is an important way that we can do that.

Educating is, I’ll keep going back to that, when you get hands on that patient, making sure that they understand what they can expect. And any misconceptions. Clearing up misconceptions about being on clinical trials is really important so that when you have a patient that is eligible, that they feel comfortable and confident in joining that study.

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How Do Research Nurses Assist Myeloma Patients on Their Journey?

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How Do Research Nurses Assist Myeloma Patients on Their Journey? from Patient Empowerment Network on Vimeo.

Research nurses can help myeloma patients, but how do they help exactly? Clinical trial nursing director RuthAnn Gordon from Memorial Sloan Kettering Cancer Center explains the different ways that research nurses help during the patient journey.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

How Do Nurses and Allied Professionals Help in Myeloma Clinical Trial Settings

 Understanding Unique Barriers Faced by Myeloma Research Nurses

 Understanding Distinct Barriers to Myeloma Clinical Trial Participation

Transcript:

Dr. Nicole Rochester:

We know that research nurses are at the front line of treating patients. Can you speak to your role, and how you believe it has changed over time?

RuthAnn Gordon:

Absolutely. First, I can tell you that I’ve been doing research nursing for over 20 years and really love the work. I think it’s important for patients to have that support when they’re going through a clinical trial. And so we’ve done a lot of work to make sure that they have that support. So our role is to really be able to guide the patient through the journey, making sure that they’re educated on what they can expect on the clinical trial, and not only in terms of what maybe the drug might be doing them in terms of side effects, but what is their schedule going to look like? When are they going to have to come in? How long are they going to be here? What does that mean? And how do we support them with their quality of life while they go through all the responsibilities that they as patients have on a clinical trial, and what do they need to do to get ready for that experience?

And so we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gatekeep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials.

Because trials have changed so much in the last decade. There’s so many more expectations. There are so many more things that need to happen while they’re on the trial that really having that clinician doing that with the patient has improved our ability to do those kinds of complex trials. And so I think that really recognizing that having that clinician perspective at the partner, at the bedside with the patient has really helped us to expand the kind of trials that we can do.

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HCP Roundtable: Best Practices for Talking About Clinical Trials With Myeloma Patients

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HCP Roundtable: Best Practices for Talking About Clinical Trials With Myeloma Patients from Patient Empowerment Network on Vimeo.

Clinical trials represent tomorrow’s medicine today, yet not every patient confronting a myeloma diagnosis is informed about all available care options. Surprisingly, some patients and their care partners are never introduced to the possibility of participating in clinical trials. How can we alter the course? What strategies can healthcare professionals (HCPs) employ to effectively communicate information about clinical trials and guide patients through next steps?

Experts Dr. Beth Faiman and RuthAnn Gordon share important insights into understanding the critical role of clinical trial nurses and how they educate and mentor nursing professionals around best practices for broaching clinical trial conversations.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

What Guidance Can Help Nurses With Clinical Trial Communication

 Evolving Myeloma Clinical Trial Discussions Amid a Dynamic Treatment Landscape

 HCP Strategies for Navigating the Pre-trial Eligibility and Informed Consent Process

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and overcoming practice barriers. Today we are tackling best practices for talking about clinical trials with myeloma patients. One significant challenge for some providers is initiating conversations about clinical trials and determining the appropriate timing of those conversations.

While clinical trials are often described as embodying tomorrow’s medicine today, not every patient facing a myeloma diagnosis is well-informed about all available care options. Astonishingly, some patients and their care partners are never even introduced to the possibility of participating in clinical trials. How can we shift this trend? How do we make these conversations a standard part of healthcare discussions at the outset of care?

What strategies can we as healthcare professionals employ to effectively convey information about clinical trials and guide patients and families through the next steps? We are joined today by RuthAnn Gordon, Director of Clinical Trial Nursing at Memorial Sloan Kettering. Ms. Gordon oversees clinical trial nurses, and develops and implements policies, procedures, standards, and systems to improve quality and compliance in the conduct of clinical research. We are also joined by Dr. Beth Faiman, a nurse practitioner and research oncology professional at the Cleveland Clinic. Dr. Faiman is an active author, presenter, and educator on the topic of multiple myeloma. Thank you both for joining me for this very important conversation.

Dr. Beth Faiman:

Thank you for having us.

Dr. Nicole Rochester: So we have a lot to discuss as it relates to best practices for talking about clinical trials with myeloma patients and their families. And I think this is always a topic that deserves so much conversation, likely more than we will be able to dedicate today. And while it can be a broadly beneficial conversation to have, in the program today we are speaking to the unique needs of myeloma patients and their families.

Some of the topics we’ll tackle today are understanding the critical role of clinical trial nurses, healthcare provider to healthcare provider recommended strategies to effectively communicate about pretrial eligibility determination and the consenting process, and how to educate and mentor nursing professionals in community hospital settings and beyond, guiding them to assist patients and families through the subsequent steps of participating in a clinical trial.

So let’s get started by talking about the role of clinical trial nurses. And, Ms. Gordon, I’m going to start with you. We know that research nurses are at the front line of treating patients. Can you speak to your role, and how you believe it has changed over time?

RuthAnn Gordon:

Absolutely. First, I can tell you that I’ve been doing research nursing for over 20 years and really love the work. I think it’s important for patients to have that support when they’re going through a clinical trial. And so we’ve done a lot of work to make sure that they have that support. So our role is to really be able to guide the patient through the journey, making sure that they’re educated on what they can expect on the clinical trial, and not only in terms of what maybe the drug might be doing them in terms of side effects, but what is their schedule going to look like? When are they going to have to come in? How long are they going to be here? What does that mean? And how do we support them with their quality of life while they go through all the responsibilities that they as patients have on a clinical trial, and what do they need to do to get ready for that experience?

And so we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gate keep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials. Because trials have changed so much in the last decade.

There’s so many more expectations. There’s so many more things that need to happen while they’re on the trial that really having that clinician doing that with the patient has improved our ability to do those kinds of complex trials. And so I think that really recognizing that having that clinician perspective at the partner, at the bedside with the patient has really helped us to expand the kind of trials that we can do.  

Dr. Nicole Rochester:

Thank you. And as a physician who acknowledges that the time that we are allotted with our patients is often very little, it really makes a lot of sense that you all are able to bridge those gaps in the patient education, and are critically important to this work. So thank you for the work that you do. Dr. Faiman, we know that patients with myeloma are living longer, and they’re dealing with a different set of challenges than perhaps they previously encountered. So can you speak to the critical role of nurses specifically in the myeloma trial setting today?

Dr. Beth Faiman:

Yeah, absolutely. You know, I must first start by saying that the successes in the treatment of multiple myeloma can be owed to the brave participation of the patients and the caregivers. So let’s not forget about the caregivers to support the patients with clinical trials. And I started as a clinical trials nurse in the 1990s managing these patients, and a nurse practitioner in 2002. And now my role is different also as a researcher. And so I have seen firsthand all these drug developments. And so the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important. And how can we support our patients who are now living a longer lifespan with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life? I know we have a very robust program to talk about later on, but I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.

Dr. Nicole Rochester:

Thank you. And thank you for acknowledging the role of the patients and their caregivers in all of the growth that we’ve seen in this field, in the research. Ms. Gordon, we know that diversity in clinical trials is lacking. Certainly there have been lots of reports about that. It’s gotten increasing attention over the last few years. There’s now regulations related to that. And while things are changing, we have a long way to go. And it’s also important that we celebrate the wins that we’ve achieved along the way. So my question for you is, do research nurses play a role in increasing diversity in clinical trials and also in trial innovation?

RuthAnn Gordon:  

Absolutely. Absolutely. I think that one of the things that is important is community outreach, right? And so we have a lot of opportunities for research nurses. Well, as in large academic settings, a focus needs to be on exploring ways to have partnerships with our community organizations. And once those connections are established, the research nurses can play an extremely pivotal role in ensuring that we’re not only at point-of-consent educating, but way before that, getting involved in pre-screening activities in order to ensure that we’re looking at a diverse population.

And also to help with providers that are in the community that may have more advanced questions, and having the nurse being partners with those clinicians in order to help them get through the questions that they might have in a more timely manner. And so the research nurses that are attached to those academic centers have a pivotal role in ensuring that the community centers have support.

And in doing the pre-screening, I think is an important feature of having the research nurse also be involved in that process. And so I think that…we know that the community has needs, and we know that we need to increase that access. So looking at opportunities to partner with those settings, to me, with the research nurse, is really critical, and I think is an important way that we can do that.

Educating is, I’ll keep going back to that, when you get hands on that patient, making sure that they understand what they can expect. And any misconceptions. Clearing up misconceptions about being on clinical trials is really important so that when you have a patient that is eligible, that they feel comfortable and confident in joining that study.

Dr. Nicole Rochester:

Wonderful. Thank you so much. Dr. Faiman, I’m going to come back to you. And my question for you is, can you speak to unforeseen or outdated practice-related barriers that may actually hinder the work of research nurses?

Dr. Beth Faiman:

Absolutely. So I wanna preface this by saying in my mind. I think that both oncology nurses and advanced practice providers are highly trained professionals that should function within a multidisciplinary team. So that team, just as you mentioned before, Dr. Rochester, was the physician has limited time, maybe even the advanced practice provider has limited time. How can we harness all of our resources to provide the best care to that patient? And clinical trials are one of them. Clinical trials will offer support so that the patient can have access to a pharmacist, a social worker, a dedicated nurse, a dedicated line to call if they’re having a symptom. But to speak to some of the outdated procedures, again, it goes to scope of the practice. No matter how highly trained they are experientially or with credentialing, there are practice barriers within the hospital organization within state laws.

The nice thing about clinical trials though, is that nurses in most institutions are very able to watch that clinical protocol. They’ll look for who needs to hold a medication because of toxicity, consult with the provider, and then they’ll say, “Okay, hold your dose. And when your toxicity resolves, reduce it one dose level, and come back for labs,” or whatever that would entail. So while there are outdated practices historically, I think that within clinical trials nursing it provides some more autonomy for oncology nurses, again, as a part of that multidisciplinary team to enhance patient care.

Dr. Nicole Rochester:

That’s wonderful. Are there any additional solutions that you think are necessary as we continue to see advancements in myeloma?

Dr. Beth Faiman:

Continuing education for these highly trained providers. And so those kind of…the education though, I’ll tell you, I think should focus a lot on the disparities in clinical research. One of the things I’m passionate about is highlighting the implicit and explicit biases that are in clinical research. Many of us will say, “Oh, that person won’t be a good clinical trial candidate because they live too far away or they don’t have a caregiver.” And so I’m really…I tell all of my nurses, nurse practitioners, even physicians, just ask a patient. Don’t think that because they live an hour away, they’re not going to want to participate in a well-designed clinical trial without even asking them. That doesn’t even allow them the opportunity to provide feedback.

And then not to mention all of the resources that are available to patients that provide, that participate in clinical trials. Many of the research studies will provide transportation or an overnight stay or some nominal, again, not trying to coerce the patients, but some nominal reimbursement for expenses to allow them to have access to that drug. So I can talk on and on, because I’m so passionate about this topic. But being aware that biases exist, through continuing education will hopefully enhance the diversity of clinical trials so that patients will be able to have access to care, and then that the clinical trial results are representative of the actual population of who we’re treating.

Dr. Nicole Rochester:

Thank you. I can definitely feel they’re both of your passion, and that’s why it’s so important that we have you here with us today for this conversation. So let’s shift focus a little bit and begin to talk about communication between healthcare providers to effectively communicate about pretrial eligibility determination and the consent process. So I’m going to go right back to you, Dr. Faiman. What do you think are the unique barriers that providers face when they’re speaking about myeloma trials to patients and their families?

Dr. Beth Faiman:

Right. So I think multiple myeloma is unique in that there are such an explosion of new therapies within the last decade. There hasn’t been such momentum in any other cancer such as multiple myeloma. But, unfortunately, there are challenges such as language barriers and communication problems that overarching with all the different specialties. The geographic I had already mentioned in a previous discussion about the geographic barriers to participate in clinical trials, not meeting inclusion criteria, I think it takes an astute nurse or advanced practice provider or physician to now sequence the therapy.

So for example, they have new therapies such as BCMA-targeted drugs that are available through cellular therapy trials or bispecific antibody trials. And without getting too specific into the drugs, you need a specialist to be able to say, “Okay, if I give you this drug today, that will exclude you from a clinical trial that might be very innovative and promising in the future.”

So those are unique barriers to accessing clinical trials or standard therapies for that matter because of the plethora of therapies that are available. So getting in, having patients get in with a myeloma specialist, they might not see them on a regular basis, maybe employ telehealth techniques, see them once and then virtually connect, share information about what might be available. Those are ways that you can provide access to patients, caregivers, and others throughout their disease trajectory because they’re living longer than ever.

Dr. Nicole Rochester:

Which is a wonderful thing.

Dr. Beth Faiman:

Yes. 

Dr. Nicole Rochester:

Ms. Gordon, you’ve been doing this for a long time. In your experience, what are tried and true strategies that healthcare providers can implement to effectively communicate with their patients about clinical trials when speaking to pretrial eligibility determination and the consent process specifically?

RuthAnn Gordon:

Yeah. Thanks for the question. I think that an important thing whenever we’re talking to our patients is to really understand where they are with understanding and how they learn. So it’s important for us to know what their health literacy is so that we’re making sure that we’re talking in a language that they can understand and using words that are appropriate. And so that’s key. Clinical trials have a lot of comprehensive and complex assessments that are needed for pretrial eligibility, right?

So I think it’s really important to make sure that we are being transparent as to what they can expect. We don’t want them to have surprises later on and then not feel like they want to continue with that process. So I do recommend to my providers and my research nurses, sometimes get out the hard stuff up front. Know if they’re going to be there for 12-hour PKs. Let them know. It shouldn’t be a surprise. And I think that that really helps patients. First, they get involved in the process, they know what to expect, and you can really have more confidence in their adherence.

The other thing is to allow time for the conversations, right? We need to allow time for our patients to ask questions. And the consent process can be lengthy. There’s a lot on the document. Sometimes it’s quite long. So you wanna make sure that they’re in a state of mind to have the conversation, that you allow time for questions, and that you make it an exchange between the two of you. It’s a dialogue. It should be. And you should come with understanding where they’re at; understanding a little bit about what’s going on behind the scenes, right? What’s happening at home is important as you’re talking about pretrial eligibility, as you’re talking about what they can expect on trial, just to get a full picture of them.

So I think that those to me are very helpful. Providing take-home information to the patient so they have something to reflect on later is also really important, because they’re not going to grasp everything in that one session. And consenting is like an ongoing process, right? You have one conversation, you probably have 10 more.

Dr. Nicole Rochester:

That is wonderful. Thank you so much for sharing that. And I really appreciate that both of you have highlighted the importance of health literacy, and meeting our patients and families where they are and making sure that they understand, and this idea that it’s a continuum: That there may be multiple conversations that will be necessary. Dr. Faiman, as the myeloma treatment landscape continues to expand thanks to clinical trials, how are clinical trial conversations evolving, and what do you feel should be top of mind?

Dr. Beth Faiman:

That’s an excellent question. Over 20 different drugs are available in various combinations. And so we talked about sequencing very briefly about having patients that have access to clinical trials, making sure they’re not exposed to this class, or maybe they needed to be exposed to this class of drug before they can get drug B, for example. And so sharing mutual information through shared decision-making, again, the patients sharing information and goals of care, the provider and healthcare team mutually sharing information, bring in your social worker or pharmacist, etcetera, and then you can mutually agree on a treatment for the patient. And so that is something we did not have 20 years ago. There were very few effective agents.

I like to remind patients when we provide clinical trial consent forms, that the language is written by lawyers, but it’s intended to protect you. I overemphasize that this is voluntary, and you can withdraw your consent at any time. But I try to go back and highlight why there’s stringent, plus or minus one day, maybe you can’t take off three days to go on a holiday weekend, because we really need to dose this drug on that day and obtain this blood information. So again, having the patients understand what’s involved in the clinical trials and then being able to provide information.

I like to also offer handouts. So the International Myeloma Foundation has clinical trials and diversity handouts. And then another one that I really like is by the FDA that describes the importance of clinical trials. I give that to everybody. So at diagnosis, if you’re on a standard care treatment, you’re not receiving a clinical trial. Everybody that comes into my office that I see for myeloma amyloidosis and related disorders, I would say, “You are a candidate for clinical trial now, but if I or somebody else does not involve you or ask you to participate, then ask us. Just ask us about clinical trials.” I even have a pen that says “Ask me about clinical trials” so that everybody can see it.

Dr. Nicole Rochester:

I love the idea of a pen. Wonderful. Well, let’s move on to how to educate and mentor nursing professionals. Both of you are nursing professionals, and you’ve clearly highlighted in this program so far the importance of the role of nurses in this clinical trial process. So, Ms. Gordon, I’m going to go to you. We know that one significant challenge for some providers is actually initiating conversations about clinical trials and also determining the appropriate timing. Can you speak to whether care variation may pose challenges in community hospital settings, perhaps compared to academic hospitals?

RuthAnn Gordon:

Yeah, absolutely. I think one of the most important things about when to talk to the patient is every time, anytime, right? I think that we should be asking them if they’re interested in clinical trials. If they haven’t been engaged in that, we should be talking to them about, “You know, there’s maybe a chance at some time in our partnership together that we will be talking about clinical trials.” And introducing that up front I think is really important so that we don’t leave clinical trials sort of as a last thought and the patient have that feeling.

And I think that for the community setting, that’s one of the things that may be a challenge, is because it is hard to put a patient on a clinical trial and run it from a community setting. So it’s, how do we give them the support and resources so that it’s not so hard and that they do offer it and talk to their patients as much as possible about it? And I feel like that’s what we need to do more with these partnerships with academic settings, is that we have to give them support so that it’s not so hard, and that that clinical trials first of mind to them when they’re planning care for their patients.

Dr. Nicole Rochester:

I see a theme here: Partnership, collaboration. Dr. Faiman, as we continue on this topic, and as someone who has been a consistent figure in the continuum of care, how do you guide other nursing professionals when it comes to clinical trial communication? Do you have specific tips or tricks or things that you can share with the audience?

Dr. Beth Faiman:

Yeah, absolutely. So I think I have a unique perspective having been a clinical trials nurse, nurse practitioner, and now I conduct, independently, clinical trials. And so I, throughout that whole journey, so I share my experiences and some of the key tips that I like to share with other nurses and healthcare providers is just coming to the patient level. And as Ruthie had said a moment ago, at each encounter you have that opportunity to educate that patient about their labs, what’s their remission status, their disease status, what drugs are they on, what worked, what didn’t work? And the ones that are in remission for a while, one, two, three, five years, we have discussions about next therapy. So I say to them, “Okay, now, we have a great clinical trial. I think everything’s going very well with your disease remission status, but let’s make sure that you know what might be the next best thing for you.”

And I start planting that seed, giving them information about next therapy so that it’s not that, “Oh my gosh, I thought I was never going to relapse and now I need another treatment.” It’s okay, we have a game plan, we’re here in this together, let’s get some information. So disseminating this at this critical information to nurses at national conferences about the different drugs that are available, the toxicities, and how to offer them to our patients, I think is really important. But really just cheering in that partnership, as we just talked about, is really key to success, I think.

Dr. Nicole Rochester:

Great. Well, it’s time to wrap up our roundtable. And I have truly enjoyed this conversation. I have personally learned a lot. I’m sure that our audience will learn a lot as well. So I’d like to get closing thoughts from each of you. So I’ll start with you, Ms. Gordon. What is the most important takeaway message that you wanna leave with other healthcare professionals who may be watching?

RuthAnn Gordon:

Thank you. First, thank you for having me at this. This has been an amazing experience, and I want the providers out there to not be afraid of clinical trials, to look at opportunities to work with nurses to help support you in those clinical trials, to have the conversations with your patients early and often, and to work with your community partners.

Dr. Nicole Rochester:

And thank you. Thank you, Ms. Gordon. What about you, Dr. Faiman?

Dr. Beth Faiman:

Well, I guess I would say never underestimate for the nurses, nurse practitioners, physician assistants, social workers, physicians, anyone on the healthcare team. Never underestimate the unique role that you enact in the care of patients with myeloma or other disorders. Use your voice to speak up. If you think a patient is a candidate for a clinical trial but that physician or other provider hasn’t recommended it to them, then tell them why. You can refer them yourself as well. Ask patients about barriers to participation. Is it physical, financial, social? You can’t take time off of work. And then provide that assistance in counseling. It takes a big effort to support our patients, but we would’ve never gotten to where we are with treatment of multiple myeloma in 2024 without patient participation in clinical trials. So whatever we can do to enhance diversity, minimize bias, and support our patients, please try to do the best to do your part.

Dr. Nicole Rochester:

Well, thank you both, Ms. Gordon, Dr. Faiman, for this awesome conversation. We have learned a lot about how we got to where we are with myeloma. And thank you again for pointing out early on, it’s the patients and their caregivers and their participation in clinical trials that has led to the landscape where we are now with so many drugs available. And that really highlights the importance of clinical trials. We talked about diversity of clinical trials. 

We talked about the implicit and explicit biases that all of us have, and that sometimes may preclude us from recommending trials for patients that can benefit from this therapy. And we’ve talked about the importance of having these conversations, not once, not twice, but every time that you are in the presence of a patient and their family. And also just the partnership and the collaboration that has already taken place, and that we hope to continue to foster as we move forward. So thank you both again, and thank you all for tuning in to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester. 

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PODCAST: Gastric Cancer: How to Access the Best Care and Treatment for YOU

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Advances in gastric cancer research have led to more personalized therapy for patients. Dr. Yelena Janjigian discusses how biomarker testing can help guide a patient’s prognosis and treatment path, reviews currently available gastric cancer therapies, and shares tips for self-advocacy.

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

See More From INSIST! Gastric Cancer

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Transcript:

Katherine:

Hello and welcome. I’m your host, Katherine Banwell. Today’s program focuses on helping patients understand gastric cancer treatment options based on their individual disease. We’ll review the latest research and provide tips for self-advocacy to help patients access better care.  

Before we meet our guest, let’s review a few important details. The reminder email that you received about this webinar contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars.  

And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Yelena Janjigian. Dr. Janjigian, welcome. Would you please introduce yourself? 

Dr. Janjigian:

Thank you so much, Katherine, for this opportunity. My name is Yelena Janjigian. I’m a medical oncologist. And I oversee the GI oncology service at Memorial Sloan Kettering Cancer Center in New York. We’re a large group of doctors, over 40 physicians who treat everything from esophagus cancer to rectal cancer. And my research focus and my passion has been in developing new treatments for patients with stomach cancer, so I personally focus on this disease clinically and from research perspective.  

Katherine:

Okay. Lovely.  

Well, thank you so much for joining us today. I’d like to start by learning about the latest research news. Are there recent advances in gastric cancer that patients should know about? 

Dr. Janjigian:

That’s a great question. The field of gastric cancer research has accelerated and evolved immensely over the last three years. We’ve had several important approvals for treatment of metastatic disease both for biomarkers selected population and immunotherapy targeted therapies. So, there’s been a lot of research, a lot of effort and some positive data that the patients and clinicians should be aware of.  

Katherine:

And what excites you about the research you’re involved with? 

Dr. Janjigian:

I’ve been focused on gastric cancer for nearly two decades. So, my recent advances have really helped to understand how we can improve patient’s survival better, potentially cure more patients, and understand the different subsets of cancer treatments and patients with gastric cancer understanding that not all gastric cancer is the same.  

So, I think being able to zoom in on different subsets and target personalized approaches for each individual patient is why I stay in research, why I stay in gastric cancer research because we’ve been able to make some major breakthroughs.  

Katherine:

That’s excellent news. How can patients stay up to date with treatment options? 

Dr. Janjigian:

That’s a great question. And recently there’s been a lot of resources online through both the big pharma really educating patients with patient-friendly handouts. And many of my big recent papers when we publish them in big journals like Lancet or Lancet Oncology, for example, or JCO, there’s always a patient-friendly handout that comes with that data that helps patients understand some of the endpoints, how do we describe why this study is positive? 

Or why is the FDA decided to approve the drug? So, there are many patient handouts that come with some of these papers. And it’s interesting, a lot of my patients come in. When they see me, they say, “Oh, it’s so good to finally meet you. I’ve watched a lot of your videos.” So, because of COVID actually, a lot of the scientific content that used to be just in in-person meetings behind doors for doctors, now it’s all online because a lot of these scientific presentations are now made for virtual content as well. So, patients have access to it. That’s double-edged sometimes. It’s a little bit of an information overload, and it may actually make patients feel more anxious than reassure them, right? Because it’s a lot of jargon and not too – but some patients find it helpful.  

Katherine:

Yeah, I can see that. It can be a double-edged sword.   

Dr. Janjigian:

Yeah.   

Katherine:

Well, thank you for that advice. So, now that we’ve heard what’s happening in research, let’s review some more basic information about gastric cancer. First, gastric cancer is sometimes referred to as stomach cancer. Is that the same thing, or are both terms correct?  

Dr. Janjigian:

Yeah. So, stomach is really where the cancer starts. But we can talk about stomach or abdomen. But gastric and stomach are the same tumor location basically. What’s interesting actually, some patients also have tumors that start at the bottom of their esophagus and extend into the stomach. So, biologically a lot of these cancers behave similarly. In fact, in United States the most common location for these cancers actually is in between the gastric esophageal junction and the stomach.  

So, it’s in the location in of the cancer that’s at the very top of the stomach. But in short, stomach cancer and gastric cancer are interchangeable. And as I mentioned, for many of our viewers, actually gastro-esophageal junction is also part of the same disease.  

Katherine:

Could you tell us what tests are used to diagnose gastric cancer? 

Dr. Janjigian:

Most of our patients, when they come in to see me, by then the diagnosis of cancer has been made because I’m on oncologist.  

In clinical practice, patients often present with vague symptoms or no symptoms at all. And that’s an important point for our clinicians to understand. In patients who have chronic acid reflux or have, for example, other risk factors such as H. pylori infection, often they end up getting endoscopy at the time, for example, for their first colonoscopy. So, the age of colonoscopy, the first colonoscopy has is getting earlier and earlier with each update, because colon cancer is increasing in incidents in younger adults. So, sometimes patients present and get first endoscopy, for example, which is an upper test with a camera when they’re getting their colonoscopies. In other patients, unfortunately, they present with more progressive symptoms. Often, it’s difficulty swallowing, regurgitation of food, and weight loss, which is obviously very dramatic.  

And so they end up getting an endoscopy because of that and referred by their doctors.   

Katherine:

How is gastric cancer staged? And what do the stages mean? 

Dr. Janjigian:

Yeah. So, the most important part of the staging of gastric cancer and what patients ask me, “What is my risk of cancerous recurrence? What is my stage?” Really what it comes down to is the depth of invasion. So, it’s not only the size of the tumor, but how deep is it going into the muscle of the stomach, because stomach and your esophagus are basically a muscular bag, right? And so how deep is the invasion of the tumor into the wall? And also how likely are the lymph nodes to being involved? So, we assess it based on clinical symptoms such as swallowing difficulty and so forth. But in some patients, because the tumor is lower down in their stomach, they may not have very many symptoms, because there’s a lot more give in this muscular bag that our stomach is.  

And so we test the endoscopic ultrasound to look at the depth of an invasion and also other X-ray type imaging such as a PET scan, a P-E-T scan or a CAT scan, which gives us a sense of tumor location whether or not we think the lymph nodes may be involved. And ultimately the final way to assess, especially in patients who are undergoing surgery, is their microscopic involvement of the lymph nodes? Because that often drives the likelihood of cancer coming back after surgery.  

Katherine:

And how do the stages work for gastric cancer? 

Dr. Janjigian:

So, in gastric cancer it’s either early, intermediate, or late stage. And this goes from stage I to IV. So, stage IV  tumors is where most of the cancers are present. Over probably 50 percent of our patients present already at the time of diagnosis with more advanced stages. 

Biologically this cancer just tends to move quickly. So, even in between endoscopies in patients who get endoscopies frequently, often it goes from 0 to stage III or IV because of the lymph node involvement and also spread of microscopic cells, right? Tiny, tiny cells before we even see them, they spread through the bloodstream to other organs or lymph nodes outside of your abdomen. So, that’s considered to be stage IV. And then early, early stage disease is stage I. Those usually that we can just scoop them out using endoscopic procedures. They don’t even need to have full surgery. And then stage II and III is usually if there’s some involvement of the tumor through the muscle or into the muscle of the stomach and also some lymph node involvement. But that’s how we stage it.  

Katherine:

Okay. I’d like to move onto current gastric cancer treatment options. Can you provide an overview of what’s available now?  

Dr. Janjigian:

Right. So, in patients with intermediate or early-stage tumors, really surgery is the main way to cure patients. Occasionally when we have an amazing response to chemotherapy or chemotherapy with immunotherapy or just immunotherapy, we can avoid surgery. But in most patients, surgery in early-stage disease is a gold standard for cure. Of course, it can be a very jarring thing to say to someone. “We have to take out. your stomach.” But patients do live without either fully their stomach removed or partially removed. And that’s the gold standard. We do additionally other treatments to help maximize chances of cure, but surgery is the main state. As I mentioned earlier, most of our patients, however, present with later stages where surgery is not feasible.  

And when I say it’s not feasible, we would only attempt an operation if we thought there was a possibility of removing the cancer completely. Leaving some of the tumor behind, even if it’s only 1 percent of the cancer behind, makes patients unwell. They may not be able to tolerate additional chemo, so we do not recommend doing suboptimal surgery unless cancer can be completely removed. So, in those patients, we always explain the situation. And the disease is not potentially as curable, but it’s absolutely always treatable. And since the development of our immunotherapy options, really, we’ve changed the trajectory and the course of those cancers. We won’t know the stage or the final response to therapy until we’ve start it. But in those patients, usually a form of long-term therapy. Chronic treatment is very important.  

And usually it involves a combination of chemotherapy and some targeted agents, biologic agents, meaning that they were designed in the lab to target the cancer specifically. And usually, they involve some sort of immunotherapy.  

Katherine:

Excuse me. Can you go into some detail about the targeted therapies and immunotherapies that you use?  

Dr. Janjigian:

Sure. So, conventional chemotherapy works on any rapidly dividing cell. And these are chemotherapies that have been tried and true in the clinic for decades, right? And they work still in gastric. And in  particular they’re very important. And then over the last 10 years or so, we’ve started developing target agents in the lab that target the specific biologic tumor biomarkers. And when you think about tumor biomarkers, I would think about them as almost ZIP codes, right? How do you direct the cancer cell to die? 

And how do you inhibit the cancer cell for the thing that is uniquely what’s making it grow as opposed to normal cells, right? So, that’s the difference between chemotherapy because chemotherapy can affect any rapidly dividing normal cell and cancer cell, while biologic agents ideally only affect the target, cancer, the cell. So, that’s why it’s very appealing to do both to help maximize response and survival on treatment. So, the biologic therapies that are available in and already approved in our disease for stomach cancer are something called HER2 directed treatments. And that’s been my focus in the lab. And then in my group has really spearheaded a lot of this research for HER2-positive tumors. In gastric cancer it occurs in up to 20 to 30 percent of tumors, but we have drugs such as trastuzumab or Herceptin, T-DXd, trastuzumab deruxtecan-nxki (Enhertu) or in HER2 that target these agents.  

And furthermore, our work here at Memorial Sloan Kettering demonstrated the combination therapies really for HER2-positive disease has helped improve outcomes in those patients. So, that’s biologic therapy. Other biologic therapies that’s approved in gastric cancer is something called VEGFR-2 inhibitor. These are drugs that target blood vessel formation around the tumor to help the chemotherapy drugs work well and better. Those drugs are called ramucirumab or Cyramza. And that’s used in a combination of chemotherapy in second-line treatment. And there’s other drugs such as regorafenib (Stivarga) and other inhibitors that maybe have some targetable activity in our disease. And last but not the least is immunotherapy. So, immunotherapy’s a completely different class of drugs.  

We think about immunotherapies, really the fundamental problem with cancer, right? The cancer issues that it started as a normal cell. So, at some point, it was a normal cell that then became and went awry and went rogue. And the body did not recognize that there was a problem. And the immune system did not eliminate that cancer cell. Before it started to metastasize and give us problems in their body, right? So, the fundamental question is why is the body’s immune system, why did it not recognize it as a abnormal cell? Well, because it really acts and looks like a normal cell from the immune perspective. Our immune system is trained not to hurt us, right? And that’s why in patients with rheumatoid arthritis or other autoimmune disorders, what happens is the immune system goes awry. So, what the immune checkpoint blockade or immunotherapy for cancer does, is it helps take some of those brakes off our immune system and help our immune system recognize the cancer and give it permission to say, “Hey, you know what?  

You thought it was a normal cell. It’s not. It’s a cancer cell. Please help us eliminate it.” And that’s worked well because I think in for some of our patients, the immune system actually knows how to target and suppress the cancer much better than any of the fancy drugs we can design in the lab. And that’s why in some patients, immune checkpoint blockade immunotherapy has been such a game changer if you do respond, your duration and durability of response is so much more better than anything that would go to just done on our own in the lab or with other chemotherapies. So, it really is a nice way to think about it. And the patients feel like they’re part of the solutions. It’s always nice for them to have that.  

But it’s been a real game changer for both HER2-positive and HER2-negative disease in combination with chemotherapy. I’ve had the pleasure of leading some of these studies. And it’s nice to be able to update the three or the four or the five-year survival rate from these studies in a disease where in the past most patients died within a year.   

Katherine:

Dr. Janjigian, I’d like to talk about what goes into deciding on a best treatment for a patient. Is there testing that helps you understand a patient’s individual disease? 

Dr. Janjigian:

One is an important factor about this disease, and when the patient comes in, the number one factor that helps us decide, what treatment to assign, is how well is the patient feeling? What are their nutritional deficits? How functional they are. Are they able to tolerate the treatment?

Because as an oncologist, the first rule is do no harm. Most patients come in when they’re first diagnosed are pretty well functional. They’re still able to eat. And so, they’re really up for the most aggressive. And that’s probably the number one wish I have from patients. I just want us to stay well and stay alive. So, we can be very aggressive with them, at least folks that come to see us in New York. And so, then the decision fork is really do you want only standard therapy, or are you interested in clinical trials? And I think what I am able to really explain to the patients, which is great, is that the benefit of trials – and, of course, you can never guarantee that a trial will be successful, right? Because that’s by definition – a clinical trial is experimental therapy. But for gastric cancer and stomach cancer where we need as many treatment options as possible, a clinical trial gives you an opportunity to try something different, and then go back to standard therapy, and then try experimental therapy, and then go back to standard therapy.  

So, it gives you as many options as possible. The way that I help our patients visualize this is you’re trying to cross a very wide and somewhat turbulent river. And you need as many stepping stones as possible. And a clinical trial, if it makes sense for you and if you’re able to do it physically, it gives you that other option. The most important other factor is to understand which subset of stomach cancer you have, right? Because biomarker testing has helped us tremendously to advance this disease. If you look at and if you watch any of my talks, I usually have this timeline of therapeutic development in stomach cancer until really this past year.  

We’re 2022, 2021. There was over a decade of negative trials, right? And the reason why I think is because the design of the trial really focused on targeting all the patients the same way. And now the trials are becoming more and more sophisticated. So, when we talk about the biomarker testing of the tumor, the patient’s specific tumor.  

It’s important for the patient to ask their physician. “What is the status of my tumor?” And the four critical biomarkers are microsatellite instability, HER2, PD-L1, and Claudin-18.2. So, those four biomarkers have really helped us transform this field especially in patients with metastatic disease. And in all of the tertiary cancer centers, certainly here at Memorial Sloan Kettering,  for each of the subsets we have a full research portfolio.  

So the patients have both standard and experimental options available to them.             

Katherine:

Well, how can test results like biomarker testing affect the patient’s prognosis and treatment options? 

Dr. Janjigian:

It will depend on the treatment and how it is paired to the biomarkers. So, for example, a certain subset of tumors such as microsatellite and stable tumors are patients with PD-L1 high tumors or even patients with HER2-positive tumors. Now in clinical trials, we see that those patients have an outstanding dramatic response to combination therapies often with chemotherapy or immunotherapy together or even HER2 directed therapy with immunity therapy. So, it really will impact how likely your tumor is to shrink. And if the tumor is shrinking, and if you’re feeling better, obviously that translates to better survival.  

Katherine:

Yeah. What questions should patients be asking about their test results? 

Dr. Janjigian:

I think it’s important for patients to be very clear with their providers about their willingness to undergo repeated biopsies if needed.  

I think the number one misunderstanding or misnomer that I see when patients come in to see me as a highly trained specialists, and they’re seeking me out for expertise and second and third and fourth opinions is that when the biomarker test is not done, often the answer in the community from the physician was, “Well, there was insufficient tissue or the tissue quality was not great, and that’s we’re going to do it. And it turns out the patient is perfectly willing and able to undergo a second biopsy. They really do not mind because a lot of times it’s just as simple as having a repeat endoscopy. Or even on treatment off and the problem is it’s a constantly evolving cancer. So, for example, if you receive first-line treatment and then you progressed and you need additional treatment, often it’s important to get a second biopsy to understand what your biomarkers are at that point. 

And I described this to my patients. We can’t get into a battle with outdated maps. We need to know. And sometimes when there’s a misunderstanding, the doctors think, “Maybe the patient wouldn’t be willing to do it. Or they are risk-averse.” And the patient’s more than willing to do it. So, I think communicating your wishes and your intent clearly with your doctors and not being shy to ask questions, and also not being shy to seek out clinical trials, right? So, yesterday I was in clinic. I see a lot of this disease. I often see 30 patients at clinic. I had an 80-year-old patient in my clinic, right? And before you meet the patient, most doctors would think, “Well, it’s an elderly patient. They wouldn’t even be interested in clinical trials. What are we trying to accomplish here?” 

Katherine:

Right.  

Dr. Janjigian:

But this patient clearly is – he exercises five days a week. He’s extremely active. He wants the best options for him.  

So, I am not an ageist, so I asked him. I said, “What are your sort of goals of this therapy? And how interested are you in clinical trials?” And him and the family were extremely enthusiastic. And, “We’re going to go for it, and we’re going to try.” So, I think having those conversations with your doctors – because you remember gastric cancer is very rare. In my clinic I see 30 patients, but in most normal sort of oncology practices, it’s lung, breast, and colon, the big three that sort of saturate the schedule of the oncologists. So, if they see one or two gastric cancers a month, they may not be thinking along the same lines of your disease. So, then you have to ask the questions of, “Are there any clinical trials? Should I see a specialist?” Did you do all of my biomarkers? 

Katherine:

Yeah, yeah. That’s really great information to have.  

Are there other decision factors involved in deciding on treatment options? You mentioned age, comorbidities. What else do you look at? 

Dr. Janjigian:

Yeah, the other important factor as I said is nutrition. Being able to stay fit and stay independent is very important. Some of my patients ask me, and then they feel like what they eat is so important that as soon as they get their diagnosis, they restrict their diet. And then they start losing weight. And that’s not good. The number one negative prognostic factor is if you lose more than 10 percent of your body weight within the first few months of the diagnosis – because you get really weak, and then you can’t tolerate the chemotherapy. So, I tell the patients, “Your body will take from you whatever it wants. The cancer will take from you, from your body. So, you need to support yourself nutritionally.” So, if you don’t feel like eating a salad, but you are craving a cookie, it’s okay.  

Have that cookie; just don’t lose weight. And I think that’s the number one. And also, the other factor is how do you communicate your diagnosis and your prognosis to your family and your friends? Because then everybody’s asking and making you in some ways anxious, your job. And what I tell patients is, “It’s on need-to-know basis.” If you find love and support, then you can tell people. Otherwise, you can just loosely kind of mention that you need some help, and you’re going through treatment without specific details. And the great part about these combination immunotherapies is that a lot of our functional patients actually continue to work through this. And so, we fill out whatever forms they need for their jobs and so forth. But we have lawyers that are continuing to work, teachers, and sometimes even construction workers. So, really, I would say make decisions as they come up.  

Don’t run too far ahead and sort of assume that you’re going to not be well. But if you want to take some time off, that’s okay too. And so, I think the treatment paradigm for this disease has evolved so much that there’s a lot of misconceptions. And I think the job of a good oncologist is to let the patient live their life in as normal a fashion as possible. So, we work the chemo schedules around their schedule. Some of these immunotherapies you can give once a month. So, I have patients who will fly into see me, for example, get the dose, and then go back home. So, I think don’t be afraid to ask for what you need.  

Katherine:

Yeah. Well, that leads us very smoothly into self-advocacy. And it’s really important that patients advocate for themselves. So, if a patient has a question or they’re unsure about a decision, why is it so important for them to speak up?  

Dr. Janjigian:

What I always tell my patients and I explain to them, that often the doctors know a lot of information. But there’s so much information that it’s almost impossible to – and we only have 15 to 20 minutes together. So, it’s almost impossible to communicate everything that we know to you. So, you need to drive a bit of what the focus is of priorities in each visit and get as much information as you can. But also in some ways, follow the doctor’s lead. So, it’s a balance of information exchange. Use the portal as much as possible as well. The patient portal is often for follow-up questions. Write questions down. We have our nurse practitioners, our nurses, our fellows that continue to educate the patients because as things come up, and the field is so complicated that there  are just so many things that you can ask at one single appointment.  

So, it’s okay to forget something, but just write it down. In the end like anything else, you only have one sort of chance to do this in a way that you want it to be done. And as treatment progresses and you’re not feeling well, and maybe you don’t want to keep coming in for appointments and would rather go spend time in Aruba or Florida or somewhere sunny as opposed to – that’s okay. I think a lot of times it’s your life. You only have one. And I strongly believe in anything to try to get as much out of every interaction as possible using all the resources that are available to you.  

Katherine:

Well, I’d like to close today with getting your thoughts on how you feel about the state of gastric cancer care. Are you hopeful about treatment options? 

Dr. Janjigian:

I’m extremely hopeful. And usually, I finish all of my scientific talks. I’m a physician scientist.  

I travel a lot to meetings. And my goal now in my career is to attract more and more young talent and scientists that will help us make the next wave of breakthroughs for this difficult disease. I think we’ve made a lot of progress, but the reality is: We’re still not curing enough patients. And so, our next wave is not just to stabilize and help people live longer but cure them definitively and permanently. And so, I finish every single presentation I have by how much the possibility and how fruitful this field has been. Personally, for my work and career of those that I’ve mentored throughout the years all over the world. So, I’m very hopeful for the next five, 10 years in this field. It will continue to get better.   

Katherine:

It sounds very promising. Dr. Janjigian, thank you so much for joining us today.  

Dr. Janjigian:

Thank you. Great question.  

Katherine:

And thank you to all of our partners.   

If you’d like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about gastric cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Kathrine Banwell. It’s good to have you with us today.  

Factors to Consider When Choosing a Gastric Cancer Treatment Approach

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Factors to Consider When Choosing a Gastric Cancer Treatment Approach from Patient Empowerment Network on Vimeo.

What factors should be considered when choosing a gastric cancer treatment approach? Dr. Yelena Janjigian outlines key considerations that help determine the best treatment for an individual patient.

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

See More From INSIST! Gastric Cancer

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How Is Gastric Cancer Diagnosed and Staged?

How Is Gastric Cancer Diagnosed and Staged?

 An Overview of Current Gastric Cancer Treatment Options

An Overview of Current Gastric Cancer Treatment Options

 How Do Biomarker Test Results Impact Gastric Cancer Treatment Options?

How Do Biomarker Test Results Impact Gastric Cancer Treatment Options?

Transcript:

Katherine:

Are there other decision factors involved in deciding on treatment options? You mentioned age, comorbidities. What else do you look at? 

Dr. Janjigian:

Yeah, the other important factor as I said is nutrition. Being able to stay fit and stay independent is very important. Some of my patients ask me, and then they feel like what they eat is so important that as soon as they get their diagnosis, they restrict their diet. And then they start losing weight. And that’s not good. The number one negative prognostic factor is if you lose more than 10 percent of your body weight within the first few months of the diagnosis – because you get really weak, and then you can’t tolerate the chemotherapy. So, I tell the patients, “Your body will take from you whatever it wants. The cancer will take from you, from your body. So, you need to support yourself nutritionally.” So, if you don’t feel like eating a salad, but you are craving a cookie, it’s okay.  

Have that cookie; just don’t lose weight. And I think that’s the number one. And also, the other factor is how do you communicate your diagnosis and your prognosis to your family and your friends? Because then everybody’s asking and making you in some ways anxious, your job. And what I tell patients is, “It’s on need-to-know basis.” If you find love and support, then you can tell people.

Otherwise, you can just loosely kind of mention that you need some help, and you’re going through treatment without specific details. And the great part about these combination immunotherapies is that a lot of our functional patients actually continue to work through this. And so, we fill out whatever forms they need for their jobs and so forth. But we have lawyers that are continuing to work, teachers, and sometimes even construction workers. So, really, I would say make decisions as they come up.

Don’t run too far ahead and sort of assume that you’re going to not be well. But if you want to take some time off, that’s okay too. And so, I think the treatment paradigm for this disease has evolved so much that there’s a lot of misconceptions. And I think the job of a good oncologist is to let the patient live their life in as normal a fashion as possible.

So, we work the chemo schedules around their schedule. Some of these immunotherapies you can give once a month. So, I have patients who will fly into see me, for example, get the dose, and then go back home. So, I think don’t be afraid to ask for what you need. 

How Do Biomarker Test Results Impact Gastric Cancer Treatment Options?

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How Do Biomarker Test Results Impact Gastric Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

Biomarker test results comprise one of several factors that impact gastric cancer treatment options. Dr. Yelena Janjigian explains biomarker testing, key gastric cancer biomarkers that affect care, and other factors that may impact treatment decisions. 

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

See More From INSIST! Gastric Cancer

Related Programs:

How Is Gastric Cancer Diagnosed and Staged?

How Is Gastric Cancer Diagnosed and Staged?

 An Overview of Current Gastric Cancer Treatment Options

An Overview of Current Gastric Cancer Treatment Options

 Gastric Cancer Treatment and Research Highlights

Gastric Cancer Treatment and Research Highlights

Transcript:

Katherine:

Dr. Janjigian, I’d like to talk about what goes into deciding on a best treatment for a patient. Is there testing that helps you understand a patient’s individual disease? 

Dr. Janjigian:

One is an important factor about this disease, and when the patient comes in, the number one factor that helps us decide, what treatment to assign, is how well is the patient feeling? What are their nutritional deficits? How functional they are. Are they able to tolerate the treatment? 

Because as an oncologist, the first rule is do no harm. Most patients come in when they’re first diagnosed are pretty well functional. They’re still able to eat. And so, they’re really up for the most aggressive. And that’s probably the number one wish I have from patients. I just want us to stay well and stay alive. So, we can be very aggressive with them, at least folks that come to see us in New York. And so, then the decision fork is really do you want only standard therapy, or are you interested in clinical trials? And I think what I am able to really explain to the patients, which is great, is that the benefit of trials – and, of course, you can never guarantee that a trial will be successful, right? Because that’s by definition – a clinical trial is experimental therapy.

But for gastric cancer and stomach cancer where we need as many treatment options as possible, a clinical trial gives you an opportunity to try something different, and then go back to standard therapy, and then try experimental therapy, and then go back to standard therapy.  

So, it gives you as many options as possible. The way that I help our patients visualize this is you’re trying to cross a very wide and somewhat turbulent river. And you need as many stepping stones as possible. And a clinical trial, if it makes sense for you and if you’re able to do it physically, it gives you that other option. The most important other factor is to understand which subset of stomach cancer you have, right? Because biomarker testing has helped us tremendously to advance this disease. If you look at and if you watch any of my talks, I usually have this timeline of therapeutic development in stomach cancer until really this past year.   

We’re 2022, 2021. There was over a decade of negative trials, right? And the reason why I think is because the design of the trial really focused on targeting all the patients the same way. And now the trials are becoming more and more sophisticated. So, when we talk about the biomarker testing of the tumor, the patient’s specific tumor.  

It’s important for the patient to ask their physician. “What is the status of my tumor?” And the four critical biomarkers are microsatellite instability, HER2, PD-L1, and Claudin-18.2. So, those four biomarkers have really helped us transform this field especially in patients with metastatic disease. And in all of the tertiary cancer centers, certainly here at Memorial Sloan Kettering,  for each of the subsets we have a full research portfolio.  

So the patients have both standard and experimental options available to them.             

Katherine:

Well, how can test results like biomarker testing affect the patient’s prognosis and treatment options? 

Dr. Janjigian:

It will depend on the treatment and how it is paired to the biomarkers. So, for example, a certain subset of tumors such as microsatellite and stable tumors are patients with PD-L1 high tumors or even patients with HER2-positive tumors. Now in clinical trials, we see that those patients have an outstanding dramatic response to combination therapies often with chemotherapy or immunotherapy together or even HER2 directed therapy with immunity therapy. So, it really will impact how likely your tumor is to shrink. And if the tumor is shrinking, and if you’re feeling better, obviously that translates to better survival.  

Katherine:

Yeah. What questions should patients be asking about their test results? 

Dr. Janjigian:

I think it’s important for patients to be very clear with their providers about their willingness to undergo repeated biopsies if needed.  

I think the number one misunderstanding or misnomer that I see when patients come in to see me as a highly trained specialists, and they’re seeking me out for expertise and second and third and fourth opinions is that when the biomarker test is not done, often the answer in the community from the physician was, “Well, there was insufficient tissue or the tissue quality was not great, and that’s we’re going to do it.

And it turns out the patient is perfectly willing and able to undergo a second biopsy. They really do not mind because a lot of times it’s just as simple as having a repeat endoscopy. Or even on treatment off and the problem is it’s a constantly evolving cancer. So, for example, if you receive first-line treatment and then you progressed and you need additional treatment, often it’s important to get a second biopsy to understand what your biomarkers are at that point. 

And I described this to my patients. We can’t get into a battle with outdated maps. We need to know. And sometimes when there’s a misunderstanding, the doctors think, “Maybe the patient wouldn’t be willing to do it. Or they are risk-averse.” And the patient’s more than willing to do it. So, I think communicating your wishes and your intent clearly with your doctors and not being shy to ask questions, and also not being shy to seek out clinical trials, right?

So, yesterday I was in clinic. I see a lot of this disease. I often see 30 patients at clinic. I had an 80-year-old patient in my clinic, right? And before you meet the patient, most doctors would think, “Well, it’s an elderly patient. They wouldn’t even be interested in clinical trials. What are we trying to accomplish here?” 

Katherine:

Right.  

Dr. Janjigian:

But this patient clearly is – he exercises five days a week. He’s extremely active. He wants the best options for him.  

So, I am not an ageist, so I asked him. I said, “What are your sort of goals of this therapy? And how interested are you in clinical trials?” And him and the family were extremely enthusiastic. And, “We’re going to go for it, and we’re going to try.” So, I think having those conversations with your doctors – because you remember gastric cancer is very rare.

In my clinic I see 30 patients, but in most normal sort of oncology practices, it’s lung, breast, and colon, the big three that sort of saturate the schedule of the oncologists. So, if they see one or two gastric cancers a month, they may not be thinking along the same lines of your disease. So, then you have to ask the questions of, “Are there any clinical trials? Should I see a specialist?” Did you do all of my biomarkers? 

An Overview of Current Gastric Cancer Treatment Options

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An Overview of Current Gastric Cancer Treatment Options from Patient Empowerment Network on Vimeo.

Treatments for gastric cancer have expanded in recent years, providing new options for patients. Dr. Yelena Janjigian, a specialist and researcher, shares an overview of available gastric cancer therapies and outlines the different treatment classes.

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

See More From INSIST! Gastric Cancer

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How Can Gastric Cancer Patients Insist on Better Care?

How Can Gastric Cancer Patients Insist on Better Care?

 Factors to Consider When Choosing a Gastric Cancer Treatment Approach

Factors to Consider When Choosing a Gastric Cancer Treatment Approach

 How Do Biomarker Test Results Impact Gastric Cancer Treatment Options?

How Do Biomarker Test Results Impact Gastric Cancer Treatment Options?

Transcript:

Katherine:

Okay. I’d like to move onto current gastric cancer treatment options. Can you provide an overview of what’s available now?  

Dr. Janjigian:

Right. So, in patients with intermediate or early-stage tumors, really surgery is the main way to cure patients. Occasionally when we have an amazing response to chemotherapy or chemotherapy with immunotherapy or just immunotherapy, we can avoid surgery. But in most patients, surgery in early-stage disease is a gold standard for cure. Of course, it can be a very jarring thing to say to someone. “We have to take out. your stomach.” But patients do live without either fully their stomach removed or partially removed. And that’s the gold standard. We do additionally other treatments to help maximize chances of cure, but surgery is the main state. As I mentioned earlier, most of our patients, however, present with later stages where surgery is not feasible.  

And when I say it’s not feasible, we would only attempt an operation if we thought there was a possibility of removing the cancer completely. Leaving some of the tumor behind, even if it’s only 1 percent of the cancer behind, makes patients unwell. They may not be able to tolerate additional chemo, so we do not recommend doing suboptimal surgery unless cancer can be completely removed. So, in those patients, we always explain the situation.

And the disease is not potentially as curable, but it’s absolutely always treatable. And since the development of our immunotherapy options, really, we’ve changed the trajectory and the course of those cancers. We won’t know the stage or the final response to therapy until we’ve start it. But in those patients, usually a form of long-term therapy. Chronic treatment is very important.  

And usually it involves a combination of chemotherapy and some targeted agents, biologic agents, meaning that they were designed in the lab to target the cancer specifically. And usually, they involve some sort of immunotherapy.   

Katherine:

Excuse me. Can you go into some detail about the targeted therapies and immunotherapies that you use?  

Dr. Janjigian:

Sure. So, conventional chemotherapy works on any rapidly dividing cell. And these are chemotherapies that have been tried and true in the clinic for decades, right? And they work still in gastric. And in  particular they’re very important. And then over the last 10 years or so, we’ve started developing target agents in the lab that target the specific biologic tumor biomarkers. And when you think about tumor biomarkers, I would think about them as almost ZIP codes, right? How do you direct the cancer cell to die? 

And how do you inhibit the cancer cell for the thing that is uniquely what’s making it grow as opposed to normal cells, right? So, that’s the difference between chemotherapy because chemotherapy can affect any rapidly dividing normal cell and cancer cell, while biologic agents ideally only affect the target, cancer, the cell. So, that’s why it’s very appealing to do both to help maximize response and survival on treatment. So, the biologic therapies that are available in and already approved in our disease for stomach cancer are something called HER2 directed treatments.

And that’s been my focus in the lab. And then in my group has really spearheaded a lot of this research for HER2-positive tumors. In gastric cancer it occurs in up to 20 to 30 percent of tumors, but we have drugs such as trastuzumab or Herceptin, T-DXd, trastuzumab deruxtecan-nxki (Enhertu) or in HER2 that target these agents.  

And furthermore, our work here at Memorial Sloan Kettering demonstrated the combination therapies really for HER2-positive disease has helped improve outcomes in those patients. So, that’s biologic therapy. Other biologic therapies that’s approved in gastric cancer is something called VEGFR-2 inhibitor. These are drugs that target blood vessel formation around the tumor to help the chemotherapy drugs work well and better. Those drugs are called ramucirumab or Cyramza. And that’s used in a combination of chemotherapy in second-line treatment. And there’s other drugs such as regorafenib (Stivarga) and other inhibitors that maybe have some targetable activity in our disease. And last but not the least is immunotherapy. So, immunotherapy’s a completely different class of drugs.  

We think about immunotherapies, really the fundamental problem with cancer, right? The cancer issues that it started as a normal cell. So, at some point, it was a normal cell that then became and went awry and went rogue. And the body did not recognize that there was a problem. And the immune system did not eliminate that cancer cell. Before it started to metastasize and give us problems in their body, right? So, the fundamental question is why is the body’s immune system, why did it not recognize it as a abnormal cell?

Well, because it really acts and looks like a normal cell from the immune perspective. Our immune system is trained not to hurt us, right? And that’s why in patients with rheumatoid arthritis or other autoimmune disorders, what happens is the immune system goes awry. So, what the immune checkpoint blockade or immunotherapy for cancer does, is it helps take some of those brakes off our immune system and help our immune system recognize the cancer and give it permission to say, “Hey, you know what?  

You thought it was a normal cell. It’s not. It’s a cancer cell. Please help us eliminate it.” And that’s worked well because I think in for some of our patients, the immune system actually knows how to target and suppress the cancer much better than any of the fancy drugs we can design in the lab.

And that’s why in some patients, immune checkpoint blockade immunotherapy has been such a game changer if you do respond, your duration and durability of response is so much more better than anything that would go to just done on our own in the lab or with other chemotherapies. So, it really is a nice way to think about it. And the patients feel like they’re part of the solutions. It’s always nice for them to have that.  

But it’s been a real game changer for both HER2-positive and HER2-negative disease in combination with chemotherapy. I’ve had the pleasure of leading some of these studies. And it’s nice to be able to update the three or the four or the five-year survival rate from these studies in a disease where in the past most patients died within a year.   

How Is Gastric Cancer Diagnosed and Staged?

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How Is Gastric Cancer Diagnosed and Staged? from Patient Empowerment Network on Vimeo.

What tests are involved in gastric cancer diagnosis and staging? Dr. Yelena Janjigian explains key testing and considerations that are used to determine gastric cancer staging for optimal care.

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

See More From INSIST! Gastric Cancer

Related Programs:

How Do Biomarker Test Results Impact Gastric Cancer Treatment Options?

How Do Biomarker Test Results Impact Gastric Cancer Treatment Options?

 Factors to Consider When Choosing a Gastric Cancer Treatment Approach

Factors to Consider When Choosing a Gastric Cancer Treatment Approach

 How Can Gastric Cancer Patients Insist on Better Care?

How Can Gastric Cancer Patients Insist on Better Care?

Transcript:

Katherine Banwell:

Could you tell us what tests are used to diagnose gastric cancer? 

Dr. Janjigian:

Most of our patients, when they come in to see me, by then the diagnosis of cancer has been made because I’m on oncologist.  

In clinical practice, patients often present with vague symptoms or no symptoms at all. And that’s an important point for our clinicians to understand. In patients who have chronic acid reflux or have, for example, other risk factors such as H. pylori infection, often they end up getting endoscopy at the time, for example, for their first colonoscopy. So, the age of colonoscopy, the first colonoscopy has is getting earlier and earlier with each update, because colon cancer is increasing in incidents in younger adults.

So, sometimes patients present and get first endoscopy, for example, which is an upper test with a camera when they’re getting their colonoscopies. In other patients, unfortunately, they present with more progressive symptoms. Often, it’s difficulty swallowing, regurgitation of food, and weight loss, which is obviously very dramatic.  

And so they end up getting an endoscopy because of that and referred by their doctors.  

Katherine:

How is gastric cancer staged? And what do the stages mean? 

Dr. Janjigian:

Yeah. So, the most important part of the staging of gastric cancer and what patients ask me, “What is my risk of cancerous recurrence? What is my stage?” Really what it comes down to is the depth of invasion. So, it’s not only the size of the tumor, but how deep is it going into the muscle of the stomach, because stomach and your esophagus are basically a muscular bag, right? And so how deep is the invasion of the tumor into the wall? And also how likely are the lymph nodes to being involved?

So, we assess it based on clinical symptoms such as swallowing difficulty and so forth. But in some patients, because the tumor is lower down in their stomach, they may not have very many symptoms, because there’s a lot more give in this muscular bag that our stomach is.  

And so we test the endoscopic ultrasound to look at the depth of an invasion and also other X-ray type imaging such as a PET scan, a P-E-T scan or a CAT scan, which gives us a sense of tumor location whether or not we think the lymph nodes may be involved. And ultimately the final way to assess, especially in patients who are undergoing surgery, is their microscopic involvement of the lymph nodes? Because that often drives the likelihood of cancer coming back after surgery.  

Katherine:

And how do the stages work for gastric cancer? 

Dr. Janjigian:

So, in gastric cancer it’s either early, intermediate, or late stage. And this goes from stage I to IV. So, stage IV  tumors is where most of the cancers are present. Over probably 50 percent of our patients present already at the time of diagnosis with more advanced stages. 

Biologically this cancer just tends to move quickly. So, even in between endoscopies in patients who get endoscopies frequently, often it goes from 0 to stage III or IV because of the lymph node involvement and also spread of microscopic cells, right? Tiny, tiny cells before we even see them, they spread through the bloodstream to other organs or lymph nodes outside of your abdomen. So, that’s considered to be stage IV. And then early, early stage disease is stage I. Those usually that we can just scoop them out using endoscopic procedures. They don’t even need to have full surgery. And then stage II and III is usually if there’s some involvement of the tumor through the muscle or into the muscle of the stomach and also some lymph node involvement. But that’s how we stage it.