Tag Archive for: Quality of Life

Dr. Krina Patel: Why Is It Important for You to Empower Patients?

Dr. Krina Patel: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients in their care? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses her approaches and how she engages with her patients through treatment, care, and survivorship.

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Dr. Samuel Cykert: Why Is It Important for You to Empower Patients?

Dr. Samuel Cykert: Why Is It Important for You to Empower Patients?

Dr. Eugene Manley: Why Is It Important for You to Empower Patients?

Dr. Eugene Manley: Why Is It Important for You to Empower Patients? 

Transcript:

Dr. Krina Patel:

So I think in myeloma, where our patients for the most part are not cured, they’re incurable and for the most part are on therapy lifelong. I think it’s really important that they have a community to go to, including their caregivers. There’s a lot of caregiver burnout that happens, patients, when they’re doing well or well, but when they relapse, it can be pretty dramatic and kind of take away everything again. And every time a patient’s relapsing, sometimes it feels hopeless.

And I think with all the therapies we have out there, this embarrassment of riches as we myeloma doctors like to say, we have to be able to get them through to have access to these drugs at the right time, make sure we decrease toxicity. But it’s a lot of information.

And I think for our patients, no matter how much time we spend with them, it’s just, it’s overwhelming. And I think it is for a lot of my colleagues who don’t just do myeloma all the time. I mean, it’s overwhelming for me half the time when I’m trying to see my patients and figuring out which is the next therapy. And so I really, at the first visit, talk to my patients about patient advocacy groups that are out there. And I even give them websites to go to.

At MD Anderson we’re trying to make videos for our patients so that while they’re waiting in the waiting rooms, they’ll have access to those, specifically, for CAR-T therapy and bispecifics. I think those are such great novel therapies, but they’re also high maintenance as I like to call them that there’s a lot of supportive care that’s needed for infection prophylaxis to make sure they don’t get secondary cancers, right?

All these complications that can happen, neurotoxicity, etcetera. And thankfully, for the most part, our patients do really well and they can get through it. But for those patients who end up with that, it’s really important they have this information, so they know when to contact us. And I think for my colleagues as well, we’re trying really hard to make sure we have better communication, for my patients that are in the community coming in for CAR T or for bispecific therapy, then going back to their doctors, their community doctors for the rest of their care.

So we have letters, that we come up with that we give to the patient as well as send to their doctor. We have phone numbers they can call that even if they’re back home, and they need to get ahold of someone that, they have a lifeline to say, I don’t know what to do. This is happening. And I think, it’s really important again for the patients and their caregivers to really understand, this is a lifelong journey, right?

This is not something that you’re just going to get a few cycles of treatment and then you go to survivorship clinic. And then hopefully we never have to treat again. And that this myeloma as of right now is still a continuous therapy and it could be, long periods of time between therapies. Or you might go on maintenance, for a long period of time before you need your next line of therapy, but this is a lifelong therapy that we’re going to have to do with, with everybody involved.

And I think, again, I can’t see every patient out there and most myeloma specialists can’t, but we’re happy to be a part of the team. And so really, when we can have access to things that the community might not, or be able to help in terms of, what combination is the best for this patient, and what dose reductions should we do for this specific patient?

Those are the things we would love to help our community doctors with to make sure outcomes for all our patients, those who are near us, but those who are also physically not close to us that we can still be able to help to make sure that they have the best efficacy, but also the best quality of life with this disease.

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care: The Transformative Impact of Early Biomarker Testing from Patient Empowerment Network on Vimeo.

For non-small cell lung cancer (NSCLC) patients who receive early biomarker testing, what are the impacts? Expert Dr. Samuel Cykert from UNC School of Medicine discusses the benefits of biomarker testing and proactive advice for patients. 

[ACT]IVATION TIP

“…make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.”

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Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Transcript:

Lisa Hatfield:

Dr. Cykert, what are the main benefits of early and comprehensive biomarker testing in non-small cell lung cancer patients, and how does it impact treatment, decision-making, prognosis, and overall patient outcomes?

Dr. Samuel Cykert:

And 80 percent of patients with lung cancer are diagnosed with advanced disease, and really over the last half-dozen years, biomarker testing has become so important because in advanced disease, biological treatments have actually shown good benefits for a lot of patients and for some patients, just explosive benefits. And so on the treatment side, it’s very important to get a battery of biomarker tests, just to understand, as a patient, if you’re eligible for one of these treatments that are really good in terms of improving length and quality of life.

The second reason they’re important is a lot of work is being done on the research side of biomarker testing and biomarker treatments, so if a patient is to qualify for a really strong research study, biomarker testing is just something that’s very, very important. And so on the current treatment side and on the research side, there are really, really tremendous reasons to go ahead and get tested, and so my tip is since not every patient gets tested, make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.


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Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

Why Communication Is So Important in Managing Follicular Lymphoma Side Effects from Patient Empowerment Network on Vimeo.

How can communication help in managing follicular lymphoma side effects? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope share advice and benefits of open communication about side effects.

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Transcript:

Lisa Hatfield:

Though doctors can observe some patient information in blood tests and other lab work, they  also must hear from their patients. Patients are the ones who know how you’re feeling, and this is why it’s vital for you to communicate with your doctor about any symptoms and side effects that you experience. Treatment can often be adjusted to minimize symptoms and side effects to provide patients with optimal quality of life while fighting your cancer. Listen as Dr. Tycel Phillips discusses further.

Dr. Tycel Phillips:

For the most part, there are logical next steps that we can implement to either eliminate the side effects or hopefully prevent them from future treatment regimens. And also, other concerns that you may have. I mean, you only get one life. And this is your body. 

I try to explain to my patients, “I don’t want you to wait until the next visit if you have issues.” I mean, we need to sort of manage these in real time. Even things we don’t take care of right then and there, again, it gives us a heads up and a head start to try to take care of these problems the next time you come to the clinic.


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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.

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See More from EPEP Myeloma

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How Do Research Nurses Assist Myeloma Patients on Their Journey

Understanding Unique Barriers Faced by Myeloma Research Nurses

Understanding Distinct Barriers to Myeloma Clinical Trial Participation

Transcript:

Dr. Nicole Rochester:

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

Dr. Beth Faiman:

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

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

Dr. Nicole Rochester:

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

RuthAnn Gordon:

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

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

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

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


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How Do Research Nurses Assist Myeloma Patients on Their Journey?

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.

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See More from EPEP Myeloma

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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.

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See More from EPEP Myeloma

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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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When Can Small Cell Lung Cancer Patients Use Palliative Care?

When Can Small Cell Lung Cancer Patients Use Palliative Care? from Patient Empowerment Network on Vimeo.

When might small cell lung cancer patients want to use palliative care? Expert Beth Sandy from Abramson Cancer Center defines palliative care and shares examples of palliative care support.

[ACT]IVATION TIP

“…there’s even data to show in lung cancer that patients who see palliative care in addition to their primary oncologist actually live longer and have improved quality of life. So we will often pair up with the palliative care team to help our patients maximize their symptom support and their side effect support, and have a good understanding of what their goals of care are with the treatment so that everyone’s on the same page and everyone is having a good experience.”

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Transcript:

Lisa Hatfield:

Palliative care is important for quality of life during small cell lung cancer treatment. Can you, first of all, explain what palliative care is, and then also give some advice, any advice you have for patients and their families on including palliative care early on in their course?

Beth Sandy:

So first, let’s define what palliative care is. It seems to be a big word, and sometimes people get a little concerned or confused when they hear that and they think, “Oh, does this mean I’m at the end or something like that?” And it absolutely does not. So palliative care means helping with supportive care or treatment of your side effects or symptoms. So we have a whole different set of doctors and nurse practitioners at my institution who just focus on the palliative care needs.

So, for example, if I have a patient with lung cancer, that’s what I treat, or maybe small cell lung cancer, but if I have a patient with lung cancer who is having a lot of pain and in my visit, I know the basics of the opioids and other medications, but usually we’ll send those patients to palliative care because they will have some other ideas and they can really focus and spend a half-hour just talking about those symptoms, like the pain, the cough, the shortness of breath, the weight loss.

So some people call it palliative care service, other people call it a supportive care service. That’s another kind of term for it. What the palliative care teams often do is what’s called the goals of care discussion, and that can mean a lot of different things to patients. What are your goals with life in general? Not even related to your cancer. Learning about you. Like who do you live with? Who is dependent on you? Who are you dependent on? And then going from there, and what is your understanding of your cancer and what are your goals with the treatment?

Sometimes we use a term called trade-offs. We would say, if the cancer, we’re treating it and it’s worsening, and then we have another treatment for it, and those side effects may be a little bit harder, is that something you want to risk, is being in the hospital and maybe being sick over the holidays or something, or would you prefer not to do that?

So palliative care often helps us with these goals of care discussions, and that can even lead to discussions about do I want CPR and resuscitation and things like that? Some people from the very start of their cancer, even if it’s a curable cancer, say, “But I’m at the point in my life where I have all these other illnesses, and I don’t want to be resuscitated. I want a natural death.” So those are all things that palliative care oftentimes can help with, living wills and things like that. And it’s not to say that your oncologist can’t because these are things I can do as well. But if I’m in a visit with you and I wanted to focus really on the current chemotherapy you’re on and those side effects, it may be better to have a palliative care doctor come on who is trained more in having those discussions.

And I wanted to make one distinction. Is that palliative care is absolutely not hospice care. So hospice care is when we’ve decided we do not want to do any more treatment for the cancer, and we want to improve the quality of the time that we have left. That’s hospice care. Palliative care is not that. Palliative care is when you are still on treatment, and we just want to maximize the supportive care and talk about what your goals are of the treatment. So I think my activation tip here for palliative care is that we often use it in lung cancer.

There’s even a study, there’s even data to show in lung cancer that patients who see palliative care in addition to their primary oncologist actually live longer and have improved quality of life. So we will often pair up with the palliative care team to help our patients maximize their symptom support and their side effect support, and have a good understanding of what their goals of care are with the treatment so that everyone’s on the same page and everyone is having a good experience. 


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Dr. Ronald Chen: Why Is It Important for You to Empower Patients?

Dr. Ronald Chen: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

 Empowering patients and care partners is key to helping them to make informed care decisions.  How can experts provide the right information about various options based on what matters most to the patient? Prostate cancer expert Dr. Ronald Chen with the University of Kansas Medical Center shares his approach to empowering patients so they can make the individual decision for them and their family.

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Transcript:

Dr. Ronald Chen:  

I empower my patients by giving them the necessary information, so that patients and their caregivers are empowered to make the best decision for them. I think for every cancer patient, there’s always a balance that’s struck between how aggressive the treatment should be, and also how important quality of life is to them. And every patient may make a different decision among the different options that are available.

So as a physician, giving patients the right information about the different options and about the implications in terms of side effects and quality of life and survival is so important, so that each patient is empowered to make the individual decision for them and their family.

Advanced Non-Melanoma Skin Cancer: Tackling Obstacles to Care

Advanced Non-Melanoma Skin Cancer: Tackling Obstacles to Care from Patient Empowerment Network on Vimeo.

While advanced non-melanoma skin cancer treatments are available, some patients may still encounter difficulties accessing quality care. Dr. Diwakar Davar discusses common obstacles to care, social determinants of health, and the future of advanced non-melanoma skin cancer research. 

Dr. Diwakar Davar is the Clinical Director of the Melanoma and Skin Cancer Program at UPMC Hillman Cancer Center. Learn more about Dr. Davar.

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What Are the Potential Benefits of an Advanced Non-Melanoma Skin Cancer Clinical Trial? 


Transcript:

Katherine:

It’s not always easy to access the latest treatments or to find a specialist. I’m wondering what the common obstacles patients face in accessing the best care. 

Dr. Davar:

Some of the major issues are access to highly specialized treatment centers. Across the entire United States, there are clearly comprehensive cancer centers where the NCIS designated these places as being areas where patient care can deliver clinical trials available.  

Oftentimes, there is the breadth of research all the way from population research all the way to clinical trials. Not everybody has access to a comprehensive cancer center. Some patients may be living in a geographical location that is remote. Some patients could be living in a location that is not necessarily remote from a comprehensive cancer center, but may have social determinants of health that make it hard for them to access these comprehensive cancer centers. The only way around this is information.  

Patients need to be able to access information in a fashion that is both trusted, and up-to-date, and secure so that they are enabled and equipped with the right information for them to be able to have informed discussions about their care with their providers. 

Katherine:

This is all such great information, Dr. Davar. As we wrap up, I would like to get your thoughts.  

How do you feel about the future of advanced non-melanoma skin cancer research? 

Dr. Davar:

I am actually extraordinary optimistic about this landscape. When I started out as an oncologist, my big focus was in melanoma. I very quickly realized that most of the excitement was certainly, while in melanoma, was being generated, it was actually spilling over into non-melanoma skin cancer and the primary reason for that is the unique patient level challenges that make this disease a difficult disease to treat. The patient age, the comorbidities, the fact that a vast majority of our patients had gotten transplants, and that resulted in a relative contraindication of the administration of the effective agents that were developed that eradicated the majority of this disease.  

What oftentimes is a challenge, what is one man’s challenge is another man’s potential cure and it’s a potential benefit in an area in which it could be studied.  

What we realize about these challenges is they actually give us opportunities and avenues for research. As we think about non-melanoma skin cancer, we realize that this is an area in which there is tremendous potential where you can potentially give people immune therapy and improved outcomes, but not just improve patient outcomes in making people live longer, but also by reducing the burden of care by reducing the amount of surgery and radiation that people need that enables people to not just live longer, but live longer and maintain their quality of life as they age, and allows them to age with dignity. 

Dr. Gabriela Hobbs: Why Is It Important for You to Empower MPN Patients?

Dr. Gabriela Hobbs: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

What are some ways that can myeloproliferative neoplasm (MPN) care providers can help empower their patients? MPN expert Dr. Gabriela Hobbs from Dana-Farber/Harvard Cancer Center shares her perspective of how she educates her patients. Dr. Hobbs explains her methods of empowering all her patients in their care – whether they’re newly diagnosed, needing long-term MPN care, or going on to seek care from other clinicians.

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Transcript:

Gabriela Hobbs, MD: 

I think that empowering patients is really important in developing an excellent longitudinal relationship with an MPN patient. And the way that I like to empower my patients is through education. And that starts with the first meeting with the patient when they’re recently diagnosed, or maybe they’re seeking you out for another opinion because maybe something is going not well with their disease.

And so that first visit, I really like to spend a lot of time educating about what MPNs are, the different types, the things that we worry about, the possibility of disease progression, and then spending a lot of time talking about the different treatment options that exist. As well as spending a lot of time talking about how patients can maximize their quality of life with both pharmacologic interventions as well as lifestyle modification. And so education really is at the center of empowerment for patients.

And I think that that gives them a lot of control over their disease and prepares them for additional visits with me or with other clinicians if they’re seeking other care from other clinicians as well, especially those patients that maybe travel from far away. And so education during that visit is important, but also talking to patients about how to prepare for additional visits. So I talk to patients a lot about taking track of their symptoms, keeping track of how they’re feeling, how they feel with the medication, with perhaps a change in medication, how they feel like their symptoms are changing over time. Talking to them about the MPN symptom assessment form, and making sure that they can utilize that form to keep track of how they feel.

And then also asking questions…If they don’t ask questions during the encounter, make sure that they write down those questions in a notebook so that when they do go to see their clinician at the next appointment, they can make the most of that encounter by knowing that they’re going into that encounter, prepared with questions and able to summarize the way that they’ve been feeling over the last couple of weeks or months since their last appointment. So education is really always at the center of empowerment. 

Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms?

Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms? from Patient Empowerment Network on Vimeo.

What non pharmacologic strategies for managing myeloproliferative neoplasms are recommended? Dr. Gabriela Hobbs shares her approach in talking with her patients.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital and is an assistant professor at Harvard Medical School. 

Natasha Johnson, is an Advanced Oncology Nurse Practitioner at Moffitt Cancer Center, where she cares for people living with MPNs with kindness, patience, and humanity. Natasha also speaks at conferences to educate other healthcare professionals about MPN care, research, and treatment. 

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Transcript:

Nicole Rochester, MD:

Dr. Hobbs, are there any non-pharmacologic strategies that you endorse? And I’m asking you specifically because I think a lot of times, patients and care partners think that physicians aren’t well-versed in non-pharmacologic therapies or that we don’t endorse non-pharmacologic therapy. So I’m curious to know if there are any that you tend to recommend to your patients with MPNs.

Gabriela Hobbs, MD:

I love this question, and I’m glad to have an opportunity to talk about it, and I loved everything that Ms. Johnson said. For many years, I’ve felt in my practice like I’m a primary care doctor and I’m talking to patients about diet and exercise, [chuckle] especially for the patients that have essential thrombocythemia and polycythemia vera or low-risk myelofibrosis, those diseases really are diseases that I think about as another cardiovascular risk factor. And when we’re talking to patients that have cardiovascular risk factors, like obesity, like hypertension, like hyperlipidemia, diabetes, etcetera, what do we talk to them about? We talk about lifestyle modification. And I think that that fits in beautifully in the care of a patient with an MPN because there’s nothing like getting a diagnosis to take away control from your life. And so giving patients control back by saying, “Actually, you do have control over this disease by changing your lifestyle, by living an active healthy lifestyle and having a well-balanced diet,” I think can actually be very helpful.

One of the things that we don’t talk a lot about in MPNs, ’cause we’re focused on cell signaling and new fancy medications, is just the basics, lifestyle modification. And so I’m a huge fan of that holistic approach. I loved what Ms. Johnson said about, “Don’t let yourself be defined by this disease.” Let’s really find a way of improving your quality of life and maximizing how you live your days. And so I think talking to them about lifestyle modification is something that is really near and dear to my heart. We have a clinical trial now helping patients to really change their lifestyle, get more active and eat more healthily, and I think that those things are actually really, really important. Many of my patients, the first thing they do when they get diagnosed is they want to go and find that magical supplement that’s going to change their natural history of their disease. And although I can’t really say if any of those supplements are going to be helpful or not, I can for sure say that there is no harm, and there’s probably benefit to staying active and also to having a more plant-based, less processed food diet. And I think that that really goes a long way in terms of helping patients to improve their symptoms, feel less tired and feel less anxious, also feel like they have more control over what’s going on with them.


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What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like? from Patient Empowerment Network on Vimeo.

What does the future of myeloproliferative neoplasm (MPN) care look like for patients? Expert Dr. Idoroenyi Amanam from City of Hope explains how MPN treatments have changed in recent decades, symptoms that are relieved with treatments, and how treatments of the future may help patients.

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Transcript:

Lisa Hatfield:

Dr. Amanam, what promising treatments are available for newly diagnosed MPN patients, and what questions should patients be asking? They come into your office scared to death and not even knowing what to ask. Do you have any suggestions for what those patients should be asking when they go in as a newly diagnosed patient?

Dr. Indoroenyi Amanam:

Right, right. Twenty years ago, we really didn’t have any therapies for most MPN patients, aside from performing phlebotomy and using non-specific therapies to try to help control their counts and therefore reduce their risk of clotting and stroke. We are getting to a point which is really exciting, where we actually are treating the underlying disease, meaning that the cells that are causing this cancer, we have been able to identify targets that will help eradicate those cells and, therefore, get rid of the cancer. And so we’re getting there. Unfortunately, we still are not there yet, and so when we look at the FDA-approved drugs in this space, really, they help control symptoms, they help control some of the associated complications with the disease, mainly when your spleen’s enlarged, and that potentially may affect your quality of life, mainly your nutritional status and your physical status, and so we do have drugs that are able to do that, that are FDA-approved right now.

I think in the next three to five years, we’re going to have drugs that are going to actually be able to treat the underlying disease before it gets to a point where you may need more aggressive therapy. Currently, the only defined curative therapy that we have, when I say defined, meaning that we have multiple studies that have shown that that’s the case, is bone marrow transplant. I’m a bone marrow transplanter, I do treat some of my MPN patients with bone marrow transplant to get rid of the underlying…those underlying cells that are driving this disease. But that’s a very intense therapy and it has its own associated complications. But we are…will be having other drugs that potentially we would be able to offer that are not as intense as bone marrow transplant.

And those include immunotherapy, other drugs that can target the signals that drive these cells to divide and multiply. Also there are within the bone marrow for patients that have myelofibrosis, which is one of the MPNs, we will be able to target the environment that allows for these cells to persist and grow. And so it’s exciting where we’re going, and I think the questions that as a patient that I would ask are, because of the fact that we only have few FDA-approved therapies, are there any clinical trials that are able to target the underlying disease as opposed to just treating the symptoms? I think that’s very important for the patients to ask, especially in this space now.


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How Can CAR T-Cell Therapy Care Partners Find Support?

How Can CAR T-Cell Therapy Care Partners Find Support? from Patient Empowerment Network on Vimeo.

Where can CAR T-cell therapy care partners access support? Expert Sarah Meissner and Adrienne, a care partner, discuss resources and share self-care advice for those caring for a loved one.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.

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Transcript:

Katherine:

Sarah, this is, obviously, a very taxing experience for everyone, the patient and care partner. Where can care partners find support during this time looking outside family members and relatives nearby? What other resources are available? 

Sarah Meissner:

Absolutely. I would encourage people to work with their local psychosocial team first. There may be support groups within the program that they’re receiving treatment at that could be helpful or, like Adrienne talked about, other patients or caregivers who have gone through this that they can be connected with.  

There is also some great support resources through The Leukemia & Lymphoma Society. They do have caregiver support. They have patient support, connections with patients, and that kind of stuff. So, that is another good place to look as well as the different manufacturing groups that make these CAR T cells do have patient support groups as well. So, maybe some more information, maybe some caregiver resources. They’re all a little bit different but that would be another good place to look. 

Katherine:

Adrienne, did you find any resources that you would recommend? 

Adrienne:

Well, I used, and not on particularly CAR T cell but I do have one in there, but Facebook does have closed groups that you can join. 

I did this for his bone marrow transplant. And I do get a lot of support on that particular one. It’s for spouses and caregivers in particular. So, look for that and there is one on CAR T cell but for multiple myeloma. But at the time, it was very new so there wasn’t a lot of back and forth on there. But you can really connect with people, and, of course, it’s not a substitute for any kind of medical advice. But it is nice to talk to people that are going through the same thing, especially with his bone marrow transplant. There were other caregivers that were, actually, doing it at the same time. So, that was kind of like a reassuring thing to have this little group of people that we knew were all doing it at the same time.  

Katherine:

Yeah. That’s great support. Sarah, how can care partners make sure they’re taking care of themselves? What can they be doing? 

Sarah Meissner:

I think it’s hard going through this process. The focus is so much on the patient and what they’re going through. And caregivers often forget that they have needs, too. So, taking the time to look within and recognize when you’re feeling stressed and maybe you need some support. Reaching out to friends and family is a great thing if you have that option. If you have the option to have somebody come in and hang out with the patient for a period of time, so you can go to a work out class or you can just go grab some groceries or go do something for yourself and have a few minutes that you’re not having to worry about watching the patient can be really a great thing for people. 

Sometimes, if patients don’t have other support, caregivers will take the time that the patient is in clinic and being watched by the care team to maybe go run a quick errand or do something. And that’s definitely an option as well.  

Katherine:

Adrienne, we talked about this, but do you have any advice for care partners as they begin the process? 

Adrienne:

Yes. I would just say that it’s only temporary and that the first two weeks is really intense, but it definitely gets better. And just to keep your eyes peeled on all of those little things that might not be right, because it’s really important to get them back into clinic if they need it and to take a little time for yourself.  

Katherine:

Yeah. Well, before we end the program, I’d like to get final thoughts from both of you. What message do you want to leave care partners with? Adrienne, let’s start with you. You may have already answered this question just a moment ago. 

Adrienne:

The message that I think that we would like to give, my husband, too, is that this is a lot of work, but he has had a very successful remission. And it’s very promising, and we’re excited to have a long future with this. It’s much better than having chemo every week. 

And it’s improved his quality of life. So, I think that as a caregiver, it’s a lot of work, but it’s definitely worth the work, because the end result, hopefully, will be life-changing. 

Katherine:

Yeah. Sarah, do you have anything to add? What information would you like to leave care partners with? 

Sarah Meissner:

Yeah. The care partners are such a crucial part of this process. Without them, we can’t provide this treatment. So, it’s a very important role, and we are very thankful that you are willing to do this for your loved one so that we can give them this treatment and, hopefully, get them into remission and have great results from that. So, make sure that you take the time that you need to be able to be there for your loved one and, again, just thank you for being willing to do this. 

Concerned About CLL Watch and Wait? Start Here

Concerned About CLL Watch and Wait? Start Here from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about watchful watching? Expert Dr. Ryan Jacobs explains the CLL tests and symptoms he monitors during watch and wait or active surveillance.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

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Transcript:

Lisa Hatfield:

So I just want to take a step back and kind of looking at this through the lens of a newly diagnosed CLL patient. You’d mentioned that sometimes you don’t treat every CLL patient. So is there something, if you find a patient who does not need treatment, is there something you tell the patients as far as regular monitoring? Will you monitor them to see if it progresses to the point where it requires treatment?

Dr. Ryan Jacobs:

Yeah. And we’re fortunate that this is a blood cancer that most of the time we can follow with a simple blood count and follow the white count, follow how the…follow the health of the bone marrow by looking at things like anemia, low red cell count, or a low platelet count that we call thrombocytopenia.

So that’s the easiest thing to follow, but I’m also talking with my patients and examining my patients. I want to know if their lymph nodes are causing them a lot of pain, because we should treat that, there’s no reason they should live in pain. I want to know if they’re waking up drenched in sweat all the time, if their quality of life has been really affected by that or a dramatic amount of fatigue that we can’t explain by some other cause. And I also, of course, examine the nodes myself and make sure that there are no alarming findings there. So that’s really what’s involved with checking on a CLL patient that’s on active surveillance, that’s what we call it. And there’s a list of criteria that the oncologist should know in terms of deeming who needs treatment and who doesn’t. And so we’re kind of following the same rules, so to speak, in terms of who gets treated for CLL. 


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How Can Head and Neck Cancer Patients Benefit From Palliative Care?

How Can Head and Neck Cancer Patients Benefit From Palliative Care? from Patient Empowerment Network on Vimeo.

What is palliative care and how could it benefit head and neck cancer patients? Expert Dr. Ari Rosenberg defines this care approach and explains how it can improve quality of life.

Dr. Ari Rosenberg is a medical oncologist and assistant professor of medicine at The University of Chicago Medicine. Learn more about Dr. Rosenberg.

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Expert Advice for Newly Diagnosed Head and Neck Cancer Patients


Transcript:

Katherine:

What about palliative care? How can it help people with head and neck cancer? 

Dr. Rosenberg:

Yeah, so, I’ll start by defining palliative care, which I sort of would suggest is either a treatment team, or strategies to help palliate, or relieve, the symptoms associated with cancer, or with cancer-related treatment, which unfortunately for head and neck cancer can be quite substantial. The location of cancers in the head and neck space can have a very large impact on pain, quality of life, speech, swallowing function, and man, many more. And the treatments as well, chemoradiation, surgery, things like that in the head and neck space can also have major impacts on quality of life, and some of those symptoms that patients can experience.  

So, oftentimes, management of those treatments – whether with appropriate pain medicines, medicines to help with some of the other side effects of treatment – even support for speech therapies, swallowing therapy, physical therapy, therapy to help with lymphedema, or some of the swelling that can occur with treatment – can all be very, very, very important.  

So, when patients come to my clinic, we spend much of the time discussing the treatment, and making sure that the treatment against the cancer is the right thing. But also, quite a bit of time focusing on what other things do we have to do to optimize that patient’s outcome, both in terms of survival, as well as function and quality of life.