Tag Archive for: myeloma clinical trials

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.

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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.

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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 Research Nurses Assist Myeloma Patients on Their Journey?

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

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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Dr. Peter Forsberg | Myeloma Research News From the 2023 ASH Annual Meeting

Dr. Peter Forsberg | Myeloma Research News From the 2023 ASH Annual Meeting from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Peter Forsberg reviews highlights from the 2023 American Society of Hematology (ASH) annual meeting. Dr. Forsberg shares what this promising news means for patients as well as advice for talking to your doctor about emerging therapies.

Dr. Peter Forsberg is associate professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg.

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Transcript:

Dr. Peter Forsberg:

My name is Peter Forsberg. I’m an associate professor at the University of Colorado. I am a specialist in multiple myeloma and other plasma cell disorders. And I’m here at ASH, where it’s always the most exciting time of the year for those of us in the hematology and hematologic/oncology community, where we are getting all the breaking information around all kinds of diseases.  

But a really exciting time in terms of new findings for myeloma and the other diseases we deal with.   

I think it covers a really broad spectrum. That’s been one of the really exciting things about myeloma over the past decade really is that we’ve had developments in so many different directions in terms of new therapies, new options for patients who need later line treatments, new options improving early line therapy.  

Certainly exciting to have a couple of very big studies that are being presented this year, two Phase III trials that look at four drug combinations in the newly diagnosed myeloma setting, which both show fantastic effectiveness. So, hopefully, really going to help expand that for patients with new myeloma to get really the best treatment out of the gate. And then, really maturing data around new immune therapies, both in the settings where they’re currently approved, which are sometimes later lines for myeloma patients. And then, more data on earlier lines for those therapies where they’re likely to be used in the very near future.   

At this meeting and over the past year, and ASH is always a big summation of a lot of the research that’s going on at any given time, the breakthroughs that are happening in myeloma, the innovation that’s happening in myeloma is very impactful for patients. It’s giving us great, improved options for earlier line patients allowing them to live better, live longer, preserving quality of life and then, giving us diverse new options in relapsed myeloma where we’ve had good tools but the broadening of that toolbox is very exciting.   

And it allows new and really effective options across all kinds of patient types. So, it’s really impactful across different settings.  

Patients shouldn’t hesitate to ask what are the new and developing treatment options, to ask their physicians are there new treatment options for myeloma that might be a fit for me now or in the future? Don’t hesitate to think about what might come down the road, even if you’re in a steady place with your myeloma because things are changing quickly.  

Our options now are different than they were six or 12 months ago and they’re going to be different six or 12 months from now.  

So, don’t hesitate to ask what’s new, what’s coming, should I meet with a myeloma specialist to discuss some of those specific options and whether they’re a fit for me. So, don’t hesitate to be the squeaky wheel a little bit and say what might be out there for me now or in the future.  

Path to Empowerment: Multiple Myeloma | Clinical Trials

Path to Empowerment: Multiple Myeloma | Clinical Trials from Patient Empowerment Network on Vimeo

Have you ever wanted to a hear a first-hand account from someone who has participated in a clinical trial? Hear from two patients as they describe their experience with enrollment and participation in a trial. Also, keep watching for our LIVE Q&A session with patient panelists and Myeloma expert, Dr. Manni Mohyuddin as they answer questions received from our audience. 

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Developing Research and New Myeloma Treatment Options

Developing Research and New Myeloma Treatment Options from Patient Empowerment Network on Vimeo.

What are the new developments in myeloma treatment and research? Dr. Brandon Blue discusses how the landscape of myeloma care has changed in recent years and treatment options for high-risk myeloma, and he shares developing research that patients should know about.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

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Transcript:

Katherine Banwell:

Dr. Blue, the landscape of myeloma care has changed significantly in recent years. Are there new factors to consider when working with a patient to choose a treatment approach?   

Dr. Brandon Blue:

Yeah. The good thing about myeloma is it’s literally always changing, and that’s a great thing. Compared to some of the other cancers, or really even other diseases, sometimes we’ve been using the same things since the ‘90s. But luckily for myeloma every couple years we get something that’s bigger, and typically better. So, right now some of the new things that are available for patients are all the way from newly diagnosed, all the way to people who have relapsed disease. So, we have a lot of different options that we can potentially go into.  

Katherine Banwell:

Dr. Blue, what treatment options are available for myeloma that’s considered high-risk?  

Dr. Brandon Blue:

Yeah. So, unfortunately, there’s some people who have multiple myeloma whose disease does not follow the standard pattern. Unfortunately, what happens is that there are certain mutations that actually happen in the biology of those cancer cells that actually cause them to survive when they should be dying. And unfortunately, that means that sometimes the chemotherapy and the medicines that we give them becomes a little bit more resident. 

A lot of times when we give people treatment the one question they ask is, “How long will it last?” But, unfortunately, there’s some people who have those high-risk features that unfortunately, despite whatever numbers we tell them of how long it may last, theirs actually may last a little bit shorter, and the disease may come back a little bit quicker. So, what we have to do as the doctors, and as the team, taking care of these patients is maybe do things a little bit more outside of the box, and do things that might tend to be a little bit more aggressive. 

Because sometimes we have to match the aggressiveness of the disease. If the cancer itself is starting to be high-risk or aggressive, sometimes we may have to do some nontraditional things to kind of make sure that they have a good outcome and a good result.  

Katherine Banwell:

Dr. Blue, is there developing research that myeloma patients should know about? And what are you hopeful about?  

Dr. Brandon Blue:

Yeah. One of the things that happens right now is that we have CAR T that’s available for patients got approved by the FDA. However, the CAR T product that we currently have available only have one target, which is called the BCMA, or B-cell maturating antigen. 

Which is part of the plasma cells, however, there are so many other targets on the plasma cells that potentially can be targets for new medications. And the good thing is that there are actually new CAR T and medications that are being developed that actually target other things other than the BCMA.  

So then, it may come to the point where people get more than one CAR T down the road, and I think those are exciting clinical trials. Because if there’s multiple targets, and there’s multiple CAR T, maybe we can sequence them in a way that maybe we find a cure for the disease one day.  

Katherine Banwell:

That’s exciting.  

Dr. Brandon Blue:

It is.  

Katherine Banwell:

Dr. Blue, thank you so much for joining us. Do you have anything else you’d like to mention?  

Dr. Brandon Blue:

I just want people to know that it’s okay to get a second opinion. I think that regardless of what’s happening in your care, sometimes it’s always good just to have someone, especially someone who’s what they call a myeloma specialist, to review your case, and just make sure that you’re on the right road, and that things are going well for you. So, it’s something that I would recommend for anyone to do. 

How Is Bispecific Antibody Therapy Changing Myeloma Care?

How Is Bispecific Antibody Therapy Changing Myeloma Care? from Patient Empowerment Network on Vimeo.

How does bispecific antibody therapy work? Dr. Brandon Blue explains the benefits of bispecific antibody therapy and how this treatment may be quicker to access for patients.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

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Transcript:

Katherine Banwell:

Dr. Blue, can you tell us about bispecific antibody therapy for myeloma?  

Dr. Brandon Blue:

Yeah. So, bispecific is basically similar to CAR T in a way that it uses the body’s immune system. But the big difference with bispecific therapy is that not only does it attack the plasma cell, which is the typical cancer cell in multiple myeloma, but it also brings the cancer cell to the actual immune system. 

So, it’s one thing to kind of go after the cancer cell, it’s another thing to say, “Hey, here’s the immune system, here’s the cancer cell. Let me figure out a way to marry the two of them together so that the fighting really takes place in real time.” And luckily, we’ve seen some really fantastic results.  

Katherine Banwell:

So, how is this therapy changing myeloma care? 

Dr. Brandon Blue:

The big thing about bispecifics is that they’re a much quicker process than CAR T.  

Right now, one of the things that is slowing up the CAR T process is something called manufacturing time. And so, even if someone wanted CAR T today, they may not be able to get it for six to eight weeks due to that manufacturing time. However, these bispecific are typically readily available so that if you need them today, probably by tomorrow, the next day, they can be infused. And so, that’s a much quicker time, and that allows patients to get the treatment that they need. 

Because, again, these are patients who, unfortunately, disease has not responded to a lot of the more traditional therapies. So, they need help, and sometimes they need help quickly. 

Accessing Myeloma CAR T-Cell Therapy Clinical Trials

Accessing Myeloma CAR T-Cell Therapy Clinical Trials from Patient Empowerment Network on Vimeo.

How has CAR T-cell therapy changed the landscape of myeloma care? Dr. Brandon Blue shares how this therapy has been a “game changer” in myeloma care, and how clinical trials for newer CAR T-cell therapies are advancing care and access for patients.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

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Transcript:

Katherine Banwell:

Dr. Blue, we know that the approved CAR T-cell therapies are for patients who have already undergone several lines of treatment. How has this therapy revolutionized care for myeloma patients?  

Dr. Brandon Blue:

Yeah. So, CAR T is really a game changer when it comes to multiple myeloma. I’ll tell you that previously people have seen a lot of the best medicines that we have, and unfortunately for a good percentage of people the disease just becomes what we call refractory.  

And unfortunately, despite us giving them the best medicines, the disease still likes to survive. So, we had to think of something of what can still kill cancer, but may not be the traditional chemotherapy that people may think of? So, we say, “Well, let’s come up with CAR T because it’s a way to actually use the body’s own immune system to fight off those cancer cells.” And for myeloma it really has shown a lot of progress. And one of the things that we know now is that not only do we have one, but we have two products, and maybe even a third coming down the pipeline because there’s more and more of this CAR T becoming available. 

And that’s better, and better for patients.  

Katherine Banwell:

Absolutely. That’s great news. For patients who are recently diagnosed, Dr. Blue, is there any chance of accessing this treatment sooner? Maybe through clinical trials. 

Dr. Brandon Blue:

Yeah. One of the biggest clinical trials that I think that people are excited about is trying to challenge something that we’ve been doing since the 1980s, which is stem cell transplant.  

So, typically, when a person get diagnosed with multiple myeloma, especially newly diagnosed, stem cell transplant is typically part of the treatment plan. But now there’s clinical trials that are coming out where we challenge instead of maybe a patient going to stem cell transplant, maybe they might do CAR T instead. And we’re trying to figure out can something that we’ve been doing since the ‘80s be un-throned as the best standard practice? And so, I think that’s something that people are really excited about, that’s something I’m excited about. 

And it gives people who are newly diagnosed a chance to get some of this novel therapy.   

Katherine Banwell:

I have a follow-up question about the clinical trials, you mentioned that there is one going on. Where is it taking place?  

Dr. Brandon Blue:

Yeah. So, it’s actually a multi-center study. And so, hopefully, we hope to have Moffit Cancer Center involved in that clinical trial, but it’s multiple different sites really all over the world because I think this is a question that everybody’s really excited about. Again, like I said, transplant has been happening since 1980s, and so for some treatment to come along to potentially challenge that, I think people are excited about a new contender. And we’ve already seen the progress that CAR T has already made. 

And so, the big question is how well will it work when someone is newly diagnosed before their body has really seen all the extra treatments that are there? Will it work even better?  

We’re very hopeful, and we’re very optimistic. 

Katherine Banwell:

Where can people find out about this particular clinical trial and other clinical trials?  

Dr. Brandon Blue:

Yeah. So, I tell people there’s so many different websites and resources. One of the main ones that is very readily accessible is clinicaltrials.gov, is very kind of easy, and intuitive. Typically, what you can do at clinicaltrials.gov is you can literally kind of just type in your disease process, and then they’ll tell you if it’s newly diagnosed, or relapsed. There’s also a place called SparkCures. SparkCures is fantastic organization that really tries to focus people, and get them matched with clinical trials, which is fantastic.  

There’s also HealthTree. HealthTree not only helps people from a clinical trial standpoint, but they also have patient support programs because nobody wants to be in the fight for cancer by themselves. The American Cancer Society does a fantastic job, as well as Leukemia & Lymphoma Society. 

The International Myeloma Foundation, or the IMF, and then the MMRF, the Multiple Myeloma Research Foundation. And there’s many more, but those are some of the top ones that we readily use that have a lot of information. And some of them have not only information for the patient, but also information for the family, and the caregivers. Because again, when someone gets diagnosed with cancer it doesn’t just affect the person, it affects the whole family.  

How Are Myeloma Patients in Remission Monitored?

How Are Myeloma Patients in Remission Monitored? from Patient Empowerment Network on Vimeo.

How often should testing be administered when myeloma is in remission? Dr. Brandon Blue discusses how patients in remission are monitored and when a bone marrow biopsy may be required.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

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Transcript:

Katherine Banwell:

Dr. Blue, how often should bone marrow biopsy be performed in the years following a stem cell transplant?  

Dr. Brandon Blue:

So, typically following stem cell transplant patients are kind of switched to what we call maintenance therapy.  

Meaning that the disease is typically under control after transplant, and our job right now is to kind of put the lid on the disease and keep that lid on so that the disease doesn’t kind of bubble over. And likely, people are on that maintenance therapy for three, four, sometimes even five years, or more. And so, sometimes when the disease is very stagnant or very stable, and people are on maintenance therapy, there may not be a need for multiple repeated bone marrow biopsies. 

Because the disease may just be in a kind of dormant or remission stage. However, at the first sign that we see that things are changing, we see that unfortunately the disease may be starting to relapse, or maybe even there’s a new pain, or things happening that just need further investigation, I think a bone marrow biopsy would be very warranted at that time.  

Katherine Banwell:

Okay. So, when patients are in a kind of remission stage you just monitor them. Do you continue to do bloodwork, and test their urine, and so on?  

Dr. Brandon Blue:

Blood, urine, imaging. Blood, urine imaging. 

Katherine Banwell:

Yeah. Blood, urine, imaging.   

Dr. Brandon Blue:

Yup. Those would be the best ways to follow it. Of course, the gold standard would be a bone marrow biopsy, but typically what happens is that the blood, the urine, and the imaging typically reflect what’s happening in the bone marrow. It’d be sometimes very unlikely for a patient’s bloodwork to be normal, but then the bone marrow to be ridden with cancer. Typically, it doesn’t work that way. There are some unique circumstances where bone marrow biopsies are needed in people who have something called non-secretory myeloma, but that’s a very small percentage. 

What Testing Is Appropriate for People With Smoldering Myeloma?

What Testing Is Appropriate for People With Smoldering Myeloma? from Patient Empowerment Network on Vimeo.

How is smoldering myeloma monitored? Myeloma expert Dr. Brandon Blue explains why treatment is not necessary and the types of tests that are used to monitor this diagnosis.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

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Transcript:

Katherine Banwell:

What testing and treatments are appropriate for smoldering myeloma? And first, could you define smoldering myeloma for us?  

Dr. Brandon Blue:

Yeah. So, one of the things that makes multiple myeloma kind of a very difficult disease is that it can attack people’s bones.  

When people have the smoldering myeloma, they have none of those bone disease. When people typically have multiple myeloma it can affect their kidneys, and actually cause low blood counts called anemia.  

When people have smoldering, they don’t have any of those classic features, however, they still may have a burden of cancer cells. Anywhere from 10 to 59 percent of plasma cells is really still considered this smoldering, or inactive cancer, but it’s still cancer. And so, we know that roughly in the first five years about 10 percent of those patients will go from this inactive smoldering stage to the active myeloma and required treatment. 

A lot of times we do observation for those patients to kind of make sure that they get the treatment when they need it. There is some studies to show that some people do get treatment during the smoldering stage, but for a lot of times observation is needing because sometimes it can be several years really before someone would need treatment. 

And a lot of times we try not to expose people to treatment if it’s really not necessary at the time.  

Katherine Banwell:

I see. So, it’s more of a watch and wait. 

Dr. Brandon Blue:

Exactly right. And sometimes you actually watch and wait, and then you keep watching, and waiting, and sometimes people never develop the active disease. And so, especially in those patients, you would’ve exposed them to chemotherapy that they really never needed. And one thing that I always tell my patients is that it’s important to know that you have cancer cells, but it’s also important for us to follow it. We are here to help and support you, right? And having cancer in your body sometimes can be very anxiety-provoking. 

And so, for a lot of patients who are in that category, sometimes we offer them clinical trials that we have available to say, “Hey, this is something that we’re trying to explore and learn more about smoldering myeloma. And maybe this is something that may benefit you.” 

Katherine Banwell:

Yeah. Can a patient with smoldering myeloma be monitored through blood work? Is that something you would do?  

Dr. Brandon Blue:

Yeah. So, typically what we try to do because the disease is so multifaceted, meaning that myeloma is not the same for each person. So, the blood is a fantastic way of following the disease, and monitoring, however, we need to do a little bit more than that. We also like to collect urine because, again, multiple myeloma can affect people’s kidneys. And the good thing about urine is that we flush it down the toilet all the time, but there’s so much information that gets flushed down that we really can learn about the disease and learn about the person by following the urine over time. 

The next thing is that we can follow imaging because, again, multiple myeloma can affect people’s bones. Sometimes if you get aches, and pains, we don’t know if that’s the muscle, we don’t know if that’s a ligament, we don’t know if that’s the bone. Pain is such a subjective thing, so we need to follow people, and have them be monitored with imaging. So, I think that combination of blood, urine, and imaging would be the best thing to do. 

Myeloma Treatment: Who Is Stem Cell Transplant Appropriate For?

Myeloma Treatment: Who Is Stem Cell Transplant Appropriate For? from Patient Empowerment Network on Vimeo.

 Stem cell transplant can be an effective and viable myeloma treatment, but who is the treatment appropriate for? Expert Dr. Jeffrey Matous explains how stem cell transplants work and reviews factors that must be considered when determining if a patient is a candidate for this treatment option.

Dr. Jeffrey Matous is a myeloma specialist at the Colorado Blood Cancer Institute and the assistant chair in myeloma research for Sarah Cannon Research Institute. Learn more about Dr. Matous.

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Transcript:

Katherine:

Stem cell transplant is often considered for myeloma patients. Can you talk about who this treatment option might be appropriate for? 

Dr. Jeffrey Matous:

Absolutely, so we’ve known for decades that, what I call high-dose chemotherapy, also called stem cell transplant, is a very effective and very potent treatment of myeloma and we’ve shown that time and time again in clinical trials, including some recent ones that are published just in 2022.  

And so, high-dose chemotherapy and stem cell transplant is not for everyone. You have to be fit enough to undergo it, and this is not age-determined. It’s fitness-determined. And then, a lot of people live a long way from centers that perform high-dose chemotherapy and stem cell transplants. 

If patients have to travel hundreds of miles, then sometimes that comes into play. “Hey, I just can’t do this. I can’t get the time off, and uproot, and bring a caregiver, and travel 300 miles to get this care,” so sometimes that comes into play. Physician bias definitely comes into play. We know that some physicians are stronger proponents of high-dose chemotherapy and stem cell transplant, and I fall into that category, but we have other physicians that may not even bring it up as an option to their patients. We know, for example, that African Americans and other minorities are notoriously under-referred for high-dose chemotherapy and stem cell transplant. A lot of decisions go into that, and again, this is one of those situations where if you’re transplant-eligible, that means you’re young and vigorous, and on paper, a candidate. You want to go, at the very minimum, consult with physicians that do high-dose chemotherapy and stem cell transplant and hear about that option. 

Questions and Considerations When Making Myeloma Treatment Decisions

Questions and Considerations When Making Myeloma Treatment Decisions from Patient Empowerment Network on Vimeo.

What should be considered when making a myeloma treatment decision? Expert Dr. Jeffrey Matous discusses key factors involved in choosing therapy and provides a list of questions to ask your doctor to guide optimal care.

Dr. Jeffrey Matous is a myeloma specialist at the Colorado Blood Cancer Institute and the assistant chair in myeloma research for Sarah Cannon Research Institute. Learn more about Dr. Matous.

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Transcript:

Katherine:

What factors impact treatment decisions? 

Dr. Jeffrey Matous:

Well, there are so many. One of the key ones is fitness, and fitness is a term that myeloma doctors use and rely on tremendously. 

And fitness, more or less, falls into a couple different categories. It’s more complex than that, obviously, but generally speaking, it’s too old or too frail, or young and vigorous and I stress to my patients that vigorous or frail is not determined by chronological age. It’s determined by your physiologic age. That’s really critical, so determining what your patient’s overall fitness is, is really important in myeloma. And then, we have to assess the risk of myeloma. I think we’ll talk about this a little bit later, because not all myeloma is the same and we treat myelomas differently depending on risk, certainly. And then, patient preference is a huge part, because there are so many ways to treat myeloma these days that we explore options with the patients and sometimes patients have pretty strong opinions about, you know, one type of treatment or the other, for example.  

Katherine:

What testing should take place following a myeloma diagnosis?  

Dr. Jeffrey Matous:

Testing in myeloma is multifaceted, because myeloma can affect patients in so many different ways. For example, it involves radiology studies to look for bone disease, urine work to see if the kidneys are affected by myeloma, a lot of blood work, and then, we also do a lot of testing to make sure that we understand the whole health of the patient, because that comes into play so much when we’re making treatment decisions in myeloma.  

Katherine:

What advice do you have for patients and caregivers related to working with their healthcare team in choosing a therapy? 

Dr. Jeffrey Matous:

Yeah. I think the big thing is to do some research on your own, but really, ask questions when you see your physician. I mean, ask questions about, for example, what are my treatment options? Are there clinical trials that might be available to me? What’s on the cutting edge in myeloma? What are the standard therapies? What are the pros and cons? And a question I often counsel patients to ask when they’re seeking other opinions is if you had 100 people like me and you treated them this way, how many would do well and how many would not do so well, and prognosis, and so forth. And then, the other thing I think is really important sometimes is gauging how experienced your physician is in treating myeloma, because we actually have data that shows that patients who are treated in myeloma centers actually fair a little better than those who are not. 

Involving a myeloma expert in your care doesn’t necessarily mean you have to get your care at that center. It just means you may want a myeloma expert on your team. Pretty much every doctor I know welcomes a myeloma person on their team, because the field is so rapidly evolving. It’s really hard to keep up with for a lot of people. 

Key Questions to Ask Your Myeloma Doctor About Induction Therapy

Key Questions to Ask Your Myeloma Doctor About Induction Therapy from Patient Empowerment Network on Vimeo.

What key questions should you ask your myeloma care provider when choosing induction therapy? Expert Dr. Benjamin Derman discusses factors that are important for patients to consider when making treatment decisions along with their care team.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

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Transcript:

Katherine:

Let’s share some tips for having that conversation. I’d like to start with induction therapy, which is the first line of treatment for patients. What questions should patients ask when choosing therapy early in their diagnosis?

Dr. Derman:

Yeah, that’s a great question. And it’s of course – it’s really the patient priorities I would say. So, one of the things that I like to discuss with patients is, number one, what are the things that they value? And that’s a hard question to ask without any qualifiers.

So, one of the things that I often ask patients to think about is the – first of all, the number of visits to the medical center. Certain therapies are weekly, certain therapies may actually decrease in frequency overtime. So, if that is something, it’s hard to travel, it’s hard to get someone to take you or to come yourself, or you just don’t want to be in the clinic as much – right? If that’s your number one priority, there are going to be certain therapies that are – or regimens that may be better suited for that patient. If somebody says, “I don’t care how many times I have to come, my goal is the deepest response possible,” you can think about things from that standpoint.

I mentioned side effects. What are the things that are scary to you personally, as a patient? Some people may look at that neuropathy, as I mentioned, and say “No way. That sounds horrible. I can’t do my job.” Other people would say, “I already have some cardiac issues. I don’t want to take that risk.” Right? So, there are different side effects that we have to take into account.

Especially when it comes to talking about transplant, there is not just the acute issues that we have to deal with in terms of side effects, but also long-term immunosuppression. Meaning the immune system is suppressed, and there’s a risk of infections, and it’s going to be higher than if you had not gotten a transplant. So, those are at least some of the things that I encourage patients to be thinking about.

I would also say, on top of that, patients may be approached about clinical trials. And I work at a university where we really value enrolling patients in clinical trials. But that they do come with some inconveniences as well, even though I think they really help to advance the field forward, and sometimes offer patients options they wouldn’t normally be able to get. But there are typically more visits associated with that, more evaluations, more blood draws, more bone marrow biopsies, so those are things that you really have to take into account.