Tag Archive for: Taussig Cancer Institute

Dr. Beth Faiman: Why Is It Important for You to Empower Patients?

Dr. Beth Faiman: 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? Dr. Beth Faiman from Taussig Cancer Institute shares three key elements that comprise her view of patient empowerment.

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

Beth Sandy: Why Is It Important for You to Empower Patients?

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:

Dr. Faiman:

I think as an advanced practice provider, I consider about three key elements of patient empowerment to include information, access, and engagement. So those three things really resonate with me through shared decision-making. So first of all, the patients need to possess the knowledge that they need to make informed decisions about their health? What is their health status remission? What are their future therapeutic options? Are there clinical trials available? And what’s the best treatment for them? 

And I share this information with the caregiver and the patient as well. Access is also an important role, and important thing for a patient, access to medications. Sometimes there’s co-pay assistance that we need to gain as nurses, advanced practice providers, and physicians to get patients what they need whether it’s a pill or a shot. And then finally, I did mention that shared decision-making process. And that’s where the patients are really engaged.

So I like to mutually share information between the patient caregiver and the clinical team, so we’re sharing information back and forth. We can identify what their goals of care are, and we can make decisions about their health that lessen the risk of decisional regret. Again, make them feel comfortable about the decisions they’re making. And so by these little strategies, I really thinking empowering the patients to take hold of their own health is a way that we can all mutually feel successful in their care.

What Guidance Can Help Nurses With Clinical Trial Communication?

What Guidance Can Help Nurses With Clinical Trial Communication? from Patient Empowerment Network on Vimeo.

How can healthcare providers aid nurses with clinical trial communication guidance? Expert Dr. Beth Faiman from Taussig Cancer Institute shares her unique perspective and advice as a former nurse practitioner and clinical trials nurse.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

Evolving Myeloma Clinical Trial Discussions Amid a Dynamic Treatment Landscape

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 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.


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Evolving Myeloma Clinical Trial Discussions Amid a Dynamic Treatment Landscape

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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Understanding Distinct Barriers to Myeloma Clinical Trial Participation

Understanding Distinct Barriers to Myeloma Clinical Trial Participation from Patient Empowerment Network on Vimeo.

What are some ways for myeloma advancements to be driven forward? Expert Dr. Beth Faiman from Taussig Cancer Institute discusses additional solutions to help research efforts for diverse participation 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

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

Understanding Unique Barriers Faced by Myeloma Research Nurses

Transcript:

Dr. Nicole Rochester:

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 is 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.


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Understanding Unique Barriers Faced by Myeloma Research Nurses

Understanding Unique Barriers Faced by Myeloma Research Nurses from Patient Empowerment Network on Vimeo.

What are some ways that myeloma research nurses overcome barriers? Expert Dr. Beth Faiman from Taussig Cancer Institute explains the vital role that research nurses serve as part of the multidisciplinary team for patients and how they overcome barriers.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

How Do Research Nurses Assist Myeloma Patients on Their Journey

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

Understanding Distinct Barriers to Myeloma Clinical Trial Participation

Transcript:

Dr. Nicole Rochester:

Dr. Faiman, 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 want to 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.


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

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

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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An Expert Review of DLBCL Research and Treatment Advances

An Expert Review of DLBCL Research and Treatment Advances from Patient Empowerment Network on Vimeo.

What’s the latest in diffuse large B-cell lymphoma (DLBCL) treatment advances? Expert Dr. Robert Dean provides an update about emerging DLBCL research and explains recent treatment approvals for relapsed DLBCL patients.

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here.

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Transcript:

Katherine:

Is there emerging DLBCL research that you feel patients should know about?

Dr. Dean:

I would say, “yes.” One of the things that has really been striking for me in the last few years alone in caring for patients with large B-cell lymphoma is how we’ve gone from a more surface-level understanding as we’ve been talking about what some of the differences are between different cases of large B-cell lymphoma to being able to get a better readout of why the lymphomas sometimes behave the way they do.

I want to be careful to make sure that patients who might be listening to this understand that we still don’t have a crystal ball. We can’t review their biopsy, look at their scans, and tell you, “I know that if you get R-CHOP you’re going to be cured.” Or if they’re a high-risk situation we can’t look into a crystal ball and tell them, “I know that R-CHOP won’t work for you, and you should do this tougher, more intensive treatment.”

We still see a lot of outcomes that we can’t necessarily predict from those other kinds of tools. They just give us a better sense of what the odds are for people as we’re at the start trying to make decisions about what to do. Another element that has really been striking has been the introduction of engineered T-cell immune therapy, which has provided an option for cure for some patients that otherwise we wouldn’t have had an option, and worked for about half the patients that go through it overall.

What’s coming down the road in clinical trials that are still ongoing is information that’ll help us decide if that approach to treatment should move to being second in line instead of a stem cell transplant for some patients, and they’re even doing studies looking at whether, for very high-risk patients, adding a CAR T-cell treatment onto the end of initial chemotherapy leaves them better off in the long run.

So, those are questions that will take some time to answer with ongoing studies, but I think are really exciting because they’re taking advantage of some of these newer treatment approaches that we know are helping some patients when their first attempts at treatment didn’t work and seeing if they might leave them better off if we use them earlier in the process.

There are other studies ongoing looking at seeing if we can improve upon the results that we get with treatments like R-CHOP as the first pass at treatment. Many such studies have been done and have not shown any benefit by adding this drug or that to the standard R-CHOP treatment, but there have been a few new drugs approved for treating people with large B-cell lymphoma after it’s relapsed in the last few years. For example, one called polatuzumab vedotin. Another combination of the drug lenalidomide and a new antibody-based drug called tafasitamab.

And then there’s another drug called loncastuximab. So, there’re studies going on with all of those looking at whether they offer more benefits to patients if we use them earlier in the game. 

Key Steps Following a DLBCL Diagnosis

Key Steps Following a DLBCL Diagnosis from Patient Empowerment Network on Vimeo.

What are key steps to take after a diffuse large B-cell lymphoma (DLBCL) diagnosis? Expert Dr. Robert Dean shares advice for newly diagnosed DLBCL patients to access optimal care.

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here

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Transcript:

Katherine:

Yeah, of course. What three key pieces of advice would you have for a patient who’s just been diagnosed with DLBCL?

Dr. Dean:

The first, I would say, is always consider getting a second opinion. I would say that’s true for a patient who’s receiving care with a local oncologist who sees and treats all forms of cancer and who’s very close to home. But I would say that’s true for someone who comes and sees me as an oncologist who treats only lymphoma patients. You should never worry about hurting your doctor’s feelings by going and talking to someone else to get another perspective on their case. The second is that they should make sure that their biopsy has been checked for the other tissue-based predicting factors that we talked about earlier that can help give a better idea of whether their chances of cure are higher or possibly lower with standard R-CHOP treatment.

And if they’re in a higher-risk group that might have a lower chance of cure with R-CHOP, then they should ask, “should I be receiving a different kind of treatment?” And then, the third thing I would say is, they should always ask, “is there a clinical trial that’s a good fit for my situation. And if there isn’t one here, is there one somewhere else that’s worth me considering even if it might mean me traveling somewhere?”

Katherine:

Right.

Dr. Dean:

There’re always a lot of clinical trials around. And if there’s a good clinical trial that’s a fit for someone’s medical situation, and I would say, if it’s pretty close to the care that they need already and is asking an additional question and possibly providing an additional element to the treatment that may be helpful and that will help us learn something along the way, then in my mind that’s the best-case scenario. 

Relapsed DLBCL Treatment: What Are the Options?

Relapsed DLBCL Treatment: What Are the Options? from Patient Empowerment Network on Vimeo.

What are the treatment options for relapsed diffuse large B-cell lymphoma (DLBCL)? Expert Dr. Robert Dean explains approaches for relapsed DLBCL patients and considerations that may alter the treatment course. 

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here.

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Transcript:

Katherine:

Are treatment considerations different for patients with relapsed disease?

Dr. Dean:

I’d say that they’re similar in a lot of ways. The first is, in my mind, again, is the patient that I’m seeing somebody who could potentially tolerate treatment that would be given with the goal of trying to cure their lymphoma on a second try?

Some patients with relapsed large B-cell lymphoma can be cured with the most common standard second-line approach, which is to get them back into remission with some standard chemotherapy, and then to follow that with a very intensive course of high-dose chemotherapy as a one-time treatment that’s given with a stem cell transplant using the patient’s own preserved healthy bone marrow stem cells. That treatment’s effective in about half of patients that can undergo it and you need to be pretty fit medically and in an overall physical sense to be able to get through that treatment okay and have a good healthy recovery afterward.

So, it’s not for everyone, but it is doable in a lot of patients. The other questions or considerations that I think are important are if a patient is sort of on the border in terms of their overall health and their willingness to undergo really rigorous intensive treatment as a second try.

We have to look, in a balanced way, at what their goals are as an individual and what it’s going to take for them to try to reach those goals. I don’t easily back away from recommending to someone that I think has a shot at cure that they should go for it if they’re medically in reasonable shape to try for that. But there’re some people who, after their initial course of treatment, decide that they don’t want to pursue intensive treatment anymore and would rather go with a lower-intensity approach that might not have the potential for cure, but that wouldn’t be as demanding of them physically or logistically.

The logistics are another factor for some patients because most patients with large B-cell lymphoma can get treated with a standard treatment approach like R-CHOP as their initial treatment at someplace that’s easily accessible to them where they live.

But the advanced treatments that are used to try to cure patients with relapsed large cell lymphoma, like a stem cell transplant, or like engineered CAR T-cell therapy, are only offered at large hospital-based cancer centers. And for some people, signing up to go and undergo that kind of treatment, to go through a long hospital stay, to be far away from family and home for a long time like that, and then have a longer recovery afterward, is something that they aren’t always comfortable with and really need some coaching through to figure out how all that aligns with their goals.

Most people, in my experience, are willing to go through what they have to if we think, and if they feel like, they’ve got a decent shot at getting cured on a second try. But that’s part of the discussion that we have when we’re talking about what their options are because there are less intensive approaches available.

They just don’t carry that same potential for cure.

Factors That Guide a DLBCL Treatment Decision

Factors That Guide a DLBCL Treatment Decision from Patient Empowerment Network on Vimeo.

What factors impact diffuse large B-cell lymphoma (DLBCL) treatment decisions? Expert Dr. Robert Dean shares key considerations, such as a patient’s health and risk factors, in determining DLBCL treatment options.

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here.

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Transcript:

Katherine:

What are the main factors you take into consideration before a treatment approach is decided on?

Dr. Dean:

From the perspective of the biology of the lymphoma itself, it’s making sure that the tissue samples have been worked up in a thorough enough way to give us the information that we’ve already been discussing, especially to rule out or to identify when there’s a double-hit kind of chromosomal change in the lymphoma cells because for most patients that abnormality does call for a different approach from the usual R-CHOP treatment.

And not all treatment centers are equipped to give those more intensive treatments. So, someone who’s got a standard and, what I would consider to be a lower-risk case of large B-cell lymphoma, could be served very well receiving standard outpatient R-CHOP chemotherapy under the care of a local oncologist who’s taking care of patients in their community.

But someone who’s got a higher-risk situation, like a double-hit large cell lymphoma, would probably be better served to at least be seen in consultation by someone who’s got more specialized expertise in treating higher-risk lymphoma patients at a referral center. Beyond that, you have to also take into account a number of patient factors. Because diffuse large B-cell lymphoma is potentially curable with standard treatments, even the high-risk cases that’s true.

The first question that I always ask myself when I’m evaluating a new patient is, “is there anything about this person’s health that would make it impossible or highly risky for them to tolerate the standard treatments that we use to try to cure our patients?” If they’re a candidate for curative-intent treatment, then we decide what the most appropriate treatment would be from there.

The second question is, as we talked about before, is R-CHOP a reasonable standard approach for that patient, or do they have other risk factors that would suggest that you’d need to do something different, such as rituximab and EPOCH treatment or another more intensive regimen for a double-hit case? There’s a subgroup of patients who have large cell lymphoma that arises in the testicle in men and those patients are at increased risk for having the lymphoma show up later as a recurrence in the nervous system. There are studies that suggest that if you add some elements to the treatment to try to prevent that, that it may reduce that risk.

Katherine:

Okay.

Dr. Dean:

And then I think the last thing I would say is, with any patient I consider, are they eligible for a clinical trial that’s looking at a novel approach to treating large cell lymphoma and, if there is a clinical trial that they’d be eligible for, is that a good fit for their situation?

We know that our best treatment approaches that we currently have for standard of care right now still don’t prevent relapses in some patients and we want to continue to be able to offer our patients better treatment approaches and the only way that we can do that is by testing new ideas in clinical trials. So, I always ask myself, “Is this patient eligible for a trial, and do we have a trial or do I know of a trial that would be a good fit for them?” 

How Does Your DLBCL Subtype Impact Your Treatment Options?

How Does Your DLBCL Subtype Impact Your Treatment Options? from Patient Empowerment Network on Vimeo.

How does a patient’s diffuse large B-cell lymphoma (DLBCL) subtype impact their treatment options? Expert Dr. Robert Dean explains the most widely used DLBCL treatment approach as well as options for highly aggressive subtypes.

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here.

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Transcript:

Katherine:

So, how does a patient’s subtype impact their treatment options?

Dr. Dean:

It’s getting there slowly. Right now, the most widely used initial treatment for patients with diffuse large B-cell lymphoma is still the monoclonal antibody rituximab (Rituxan) and the combination chemotherapy regimen called CHOP, or R-CHOP as it’s called for short all together. And for patients with lymphomas that are not the so-called double-hit type, at least in our center, R-CHOP is still the standard, most commonly used approach to treat those cases. For the double-hit cases, studies have shown that their results with R-CHOP treatment are significantly worse than what you see with the cases that are not double-hit lymphomas.

And because of that, a lot of lymphoma treatment programs have looked to other approaches to treatment that are a little more intensive, similar to what we use for highly aggressive lymphomas, such as Burkitt lymphoma, to see if we can do better for those patients. And the one that we most commonly use here at our center for the double-hit lymphoma cases is a regimen that’s called R-EPOCH, where you take the drugs that are in the R-CHOP, add an extra chemotherapy medicine, and give them in a different manner that provides a more prolonged exposure to the chemotherapy drugs with each round of treatment and also provides for some tailoring of the chemotherapy doses from one round of treatment to the next.

There aren’t any great controlled trials yet that prove that stronger treatment regimens like R-EPOCH are better for the double-hit cases of large cell lymphoma than the tried-and-true R-CHOP regimen that’s used for most other situations.

But there are what we call uncontrolled studies or retrospective studies that have looked at patients treated with those higher intensity regimens, and they at least suggest that patients treated with those approaches look like they do better than what you would have expected with the R-CHOP approach. And then there are a few less common subtypes of large cell lymphoma that are more specific and are treated in more unique ways.

For example, large B-cell lymphoma can arise in the brain only in rare cases and when that occurs it’s treated using an approach that’s really geared toward ensuring that you’re giving chemotherapy drugs that can effectively get into the brain tissue and attack the lymphoma cells there. Once in a while, you see someone who’s got both of those situations going on at once, lymphoma growing in the lymph node system or other places in the body outside of the nervous system, and lymphoma growing in the nervous system at the same time, and you need to make adjustments in how you treat those cases, too. 

What Are the Subtypes of DLBCL?

What Are the Subtypes of DLBCL? from Patient Empowerment Network on Vimeo.

What are the subtypes of diffuse large B-cell lymphoma (DLBCL)? Expert Dr. Robert Dean provides an overview of DLBCL subtypes and how treatments and outcomes can vary by a patient’s individual disease.

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here.

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DLBCL Treatment Decisions: What’s Right for You?

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What Is Diffuse Large B-cell Lymphoma (DLBCL)?


Transcript:

Katherine:

Dr. Dean, welcome. Would you please introduce yourself?

Dr. Dean:

Certainly, and thank you for having me. My name’s Rob Dean, and I’m a hematologist and medical oncologist and a staff physician at the Cleveland Clinic Taussig Cancer Institute.

Katherine:

Excellent. Thank you. Let’s start with looking at understanding and treating DLBCL. What are the subtypes of DLBCL?

Dr. Dean:

The classification of diffuse large B-cell lymphoma has gotten a little more complicated as our understanding of it has gotten deeper. Once upon a time going back maybe 15, 20 years an awful lot of cases were sort of lumped together under the broad label of diffuse large B-cell lymphoma and we always understood in the field that some patients did very well and were cured with the standard treatments of the time and that those treatments didn’t work as well for some patients.

And it’s taken years to get to a somewhat deeper understanding of what the underlying differences are in those cases that help to explain why our treatment outcomes differ for different patients, and I would say that’s feeding forward into trying to identify better treatment options for the patients who are in higher-risk groups. So, one way of understanding the heterogeneity in diffuse large B-cell lymphoma, the differences between cases, is to think about the way in which the normal cells of the immune system that turn into this kind of cancer develop. If you think about the old Time-Life Magazine illustration of the evolution of man where you see the series of figures drawn from left to right going from sort of more primitive, kind of a –

Katherine:

Ape-like.

Dr. Dean:

– ape-like figure to a progressively more modern-looking human standing upright and walking on just their legs. The way that these immune cells, which are the antibody-making B cells of the immune system, develop from a more primitive cell, you can think of it in similar terms. And we understand that cases of diffuse large B-cell lymphoma most commonly arise from a couple of points in that process of maturation that these cells are passing through as they go from the most primitive form that they take to their most mature functional form in the end.

So, one of those subgroups is something called the germinal-centered B-cell. And that involves the part of the maturation process where these immune cells have left the bone marrow, passed into a lymph node, and are interacting with other immune cells as part of their education and development process.

When the cells mutate at that stage of their development and turn into diffuse large B-cell lymphoma, the cure rate for patients with large cell lymphomas coming from that stage of immune cell development tends to be a little higher with standard treatments. When the lymphoma cells arise from an immune cell that has passed beyond that point in the maturation process to what is referred to as an activated B-cell, then the cure rates with standard treatment historically have been a little lower.

And so, you can look at markers on the lymphoma cells, or the activation of different genes in the lymphoma cells, to try to determine whether they came from an immune cell that was in one or the other of those points in its maturation process. And we know that that correlates with outcomes. So, that’s one of the main breakdowns that have become possible in understanding sort of what’s going on under the hood in diffuse large B-cell lymphoma and why do we see different outcomes in different patients.

Katherine:

Right.

Dr. Dean:

The other major change comes from understanding that for cases of large B-cell lymphoma there are common chromosomal changes that result in turning on specific genes. And if some of those genes are present in the right combination, that can create a much more rapidly growing and more chemotherapy-resistant form of large B-cell lymphoma. The two genes that are most commonly involved in that kind of a change are something called BCL-2 which, when it’s turned on abnormally, helps protect the lymphoma cells from being killed or being sort of triggered into dying by chemotherapy medicine.

And another gene that’s called MYC, or M-Y-C is how that’s spelled, and what that gene does is it tends to cause the cells to proliferate more rapidly.

It turns on other pro-survival figures and controls a pretty broad range of different programs that drive the cells to grow more quickly. So, when you’ve got both of those changes at the same time that’s sometimes referred to as a “double-hit lymphoma.” And large cell lymphomas with that double-hit kind of chromosome change have been shown in studies to have a significantly lower cure rate with our most commonly used standard treatment for this form of lymphoma, what we call R-CHOP.

So, being able to recognize those changes in cases of large B-cell lymphoma is important nowadays, both in terms of being able to share prognostic information with patients, to be able to tell them what we think the likelihood of not just getting into remission but eventually being cured will be. And also, for some situations, considering whether a treatment other than the standard R-CHOP regimen might be a better option.