Tag Archive for: clinical trials

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

In navigation of bladder cancer treatment, what role do academic and community centers take? Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses efforts that have been taken to bridge the gap between academic and community care, goals of collaborative care, and proactive patient advice.

[ACT]IVATION TIP

“…do your own research. But don’t be so kind of close-minded to think, oh, academic center, that’s going to be the best quality care community center, that’s going to be subpar. No, dig a little bit deeper, ask specifically, what do you offer and try to do a little bit of your own research and say, is there bladder preservation? Is there immunotherapy? Do you offer clinical trials, and then kind of go from there.”

See More from [ACT]IVATED Bladder Cancer

Download Resource Guide | Descargar Guía

Related Programs:

Addressing Disparities in Bladder Cancer Diagnosis and Treatment

Addressing Disparities in Bladder Cancer Diagnosis and Treatment

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?

Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?


Transcript:

Lisa Hatfield:

Dr. Hasan, what role do academic centers play in the treatment of bladder cancer, and why might patients at these centers receive different care compared to those at non-academic centers?

Dr. Shaakir Hasan:

So, the kind of “good answer” here is that they shouldn’t. There really shouldn’t be a difference in care. And I do think having been at many different types of institutions to the hardcore academics to community centers in rural communities, I have seen this transformation of, it used to be where you get the best care at these academic centers, and then you get very mediocre care at the rural communities. And they’ve made a conscious effort all throughout the country to bridge that gap.

And I think they’re doing a really good job, because you’ll like to see a lot of centers that will kind of bring everyone together and centralize the treatment, and then just kind of teach or kind of distribute the treatments the same way at other places. And I’ll also tell you that a lot of physicians are really good at what they do. A lot of times, the limitations are the resources, not so much skills or capabilities of a clinician.

So I would say as a patient, don’t be if you’re out in a rural community or a community center, don’t let that scare you or think that you’re going to get inadequate treatment, just because of that but do ask about the resources, do ask about the capabilities. If you’re in a radiation clinic, ask about the technology. If you’re in a medical oncology clinic, ask about immunotherapy and what’s available in clinical trials, et cetera. Now the question of academic centers is actually quite interesting because if you look at our research, if you look at the study that we did on bladder cancer, for example, you see that there is kind of a worse outcome at academic centers.

Now that’s not because, I don’t think that that’s because they’re doing a worse job. It’s just that patients tend to send more complicated cases to those centers, right? And so this is one of those, you know, correlation, not cusation things. And so if you look at the outcomes, you’re going to see probably worse outcomes at academic centers just because there are more complicated cases.

But if you try to isolate that, you know, stage for stage, we have to see that the results are quite similar, thankfully, alluding to kind of what I mentioned before, that the care should be starting to equalize among centers. And so I think that that’s kind of where we’re heading. What I do think academic centers might offer more so than communities is just specialized care. So if you have a urologist that all they do is bladder cancer, that’s all they do all day, that’s probably going to be someone that you want to seek out. And you know, I think a lot of urologists in the communities will say, “Hey, you got to go check out this person who only does bladder cancer.” And I think hopefully they’ll, you know, they’ll have that appropriate kind of referral pattern.

But on the other hand, there is something…there are other very simple procedures that anybody can do. And you should feel, you know, you should feel comfortable getting that done in the community. For radiation, I can tell you that there might be some specialized physicians that are only doing GU, and they have a bladder preservation program that might be done differently, implemented differently at an academic center than in the community.

But I’ll also say also caution patients, you know, there also may be some academic centers, and I’ve been at them that don’t have a program at all for bladder preservation. But there are some of the communities that do. So I think my kind of [ACT]IVATION tip here is do your own research. But don’t be so kind of close-minded to think, oh, academic center, that’s going to be the best quality care community center, that’s going to be subpar. No, dig a little bit deeper, ask specifically, what do you offer and try to do a little bit of your own research and say, is there bladder preservation? Is there immunotherapy? Do you offer clinical trials, and then kind of go from there.

Lisa Hatfield:

Okay. Thank you. That’s a great [ACT]IVATION tip. And I also like that you mentioned seeking out a specialist, I’m a huge advocate for that. I don’t have bladder cancer, I have another kind of cancer. But even if it’s just for an initial consult, or for a consultation about treatment, talk to somebody who deals with that on a very regular basis, or maybe exclusively, so thanks for that comment.

Dr. Shaakir Hasan:

And actually, I’ll follow up on that and also say, you know, sometimes it’s worth it just to get that opinion, and then have them help direct the care and be involved in your care. And they can always go back and say, “Oh, hey, let me talk to your local oncologist. I know you live 10 miles away from your local oncologist, you live three hours away from me. But we can still get you the same care, we’re going to be in communication, you’ll get my input, and then we’ll take care of you.” So yeah, it’s definitely more of a collaborative effort these days. And it’s for the better.

HCP Roundtable: Overcoming Practice Barriers to Enhance Small Cell Lung Cancer Care

How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer (SCLC)? Dr. Nagashree Seetharamu from Northwell Health and Nurse Practitioner Beth Sandy from Penn Medicine explore actionable clinical approaches and strategies to address the unique challenges in SCLC care.

Download Guide | Descargar Guía

See More from EPEP SCLC

Related Resources:

Improving Communication Around Lung Cancer Biomarker Testing

Improving Communication Around Lung Cancer Biomarker Testing 

Methods to Improve Lung Cancer Physician-Patient Communication

Methods to Improve Lung Cancer Physician-Patient Communication 

Patient-Provider Relationship Role in Lung Cancer Biomarker TestingPatient-Provider Relationship Role in Lung Cancer Biomarker Testing

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer? What strategies can be implemented to ensure that patients with extensive stage small cell lung cancer have access to participate in clinical trials and to receive cutting-edge therapies?

It is my privilege to be joined by Dr. Nagashree Seetharamu of Northwell Health. Dr. Seetharamu is an Associate Professor of Medicine at the Donald and Barbara Zucker School of Medicine at Hofstra Northwell Health, and has established a reputation at the national level through her active involvement and leadership within influential oncology organizations that steer the direction of clinical cancer care and research across the United States and globally. Thank you so much for joining this EPEP program, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

Thank you.

Dr. Nicole Rochester:

It is also my honor to be joined by Ms. Beth Sandy, a thoracic oncology nurse practitioner at the University of Pennsylvania Abramson Cancer Center. In addition to regularly presenting at several national and international nursing and thoracic oncology meetings, Ms. Sandy has published in a number of peer-reviewed medical and nursing journals. Thank you so much for joining this EPEP program, Ms. Sandy.

Beth Sandy:

Thank you for having me.

Dr. Nicole Rochester:

I’d like to start our discussion by talking about current practice barriers in small cell lung cancer care. So I’m going to start with you, Dr. Seetharamu. What are the barriers to implementing patient-centered care in the management of small cell lung cancer, and what are we learning from the existing evidence?

Dr. Nagashree Seetharamu:

Yeah, thank you. It’s a great question. I would start by saying that I think the first thing is really limited treatment advances compared to other types of cancers and clinical trial access. So compared to other types of cancers, including non-small cell lung cancer, we have very, you know, fewer options. Patients, despite all the advances, the outcomes are still suboptimal. Many of our patients present with very advanced disease and have multiple other comorbid conditions. So it makes it difficult to deliver optimal care or to enroll patients in clinical trials. In addition, we do know that palliative care improves outcomes in non-small cell lung cancer. We do not have this data as much in small cell, and there is a stigma around it. People do not avail palliative care options, which are perhaps most appropriate for patients with small cell lung cancer.

Lastly, I think there’s also streamlining the processes. We do have the low dose CT scan, lung cancer screening, fewer patients avail it. With increased availability, increased acceptance and increased uptake, probably we can see more small cell lung cancer cases in early stages that will ensure cure.

Also, there are many of our patients with small cell lung cancer have lapses in supportive, you know, social support, and that’s something that we are working with. There’s also quite a bit of disparity when we talk about small cell lung cancer, and that’s been extensively published. So delays from screening to diagnosis to treatment.

Dr. Nicole Rochester:

Thank you so much, Dr. Seetharamu. So given those barriers that you just outlined for us, how can healthcare providers overcome those practice barriers to actually enhance care for patients facing small cell lung cancer?

Dr. Nagashree Seetharamu:

So I think there…I have a few ideas, a few suggestions. I think first and foremost, is to make sure that the screening program is well-adapted. We still see less than 10 percent of patients being screened, so that is something important. Hand in hand with that is tobacco cessation. So decreasing the incidence, early detection is number one and number two for sure. In addition to that, once patients are diagnosed and are presenting, you know, improving the, or having streamlined processes for diagnosis from the patients enter care to the time they start treatment, reducing the time to treatment is extremely important.

We are really kind of sitting on a time machine, you’re really trying to get things done in a very quick order. So streamlining the processes, whether the patient is in the hospital or presents as an outpatient. Lastly, making sure that clinical trials, if they’re available, making sure that patients are screened for it, making clinical trials available to patients, making criteria broader so that patients can be enrolled. And then ensuring that everyone within a particular health system or network is aware of recent advances, and patients get optimal care wherever they are located throughout the country.

Dr. Nicole Rochester:

Thank you very much. I’m going to turn to you, Ms. Sandy. As a nurse practitioner in this space, what is your perspective regarding the primary barriers to accessing effective patient-centered care for small cell lung cancer? And then similarly, what are some strategies that you believe can be implemented to overcome these barriers?

Beth Sandy:

Thanks, Dr. Rochester. I think Dr. Seetharamu covered a lot of the barriers really, it’s getting patients to treatment quickly. As we know, this disease is very aggressive. So, this is not a disease where a patient might say, “Well, I have a two week trip to Europe planned. I’d like to go there and then start treatment.” Actually, in non-small cell lung cancer maybe, but in small cell lung cancer, it’s so important to get them started very quickly on treatment because of the aggressive nature of the disease. And it is a very chemo-sensitive disease, so they may feel better very quickly.

One thing that we do in our practice is if we see that a patient is coming in who’s newly diagnosed with small cell lung cancer, whether it be extensive or limited stage, many times our nurse navigator is looking at this in advance and we’re pre-starting the chemotherapy before they even get there. Because many of these regimens are a three-day regimen, so we want to make sure that our next three days are available for infusion that we get this patient started right away.  So sort of looking ahead can be really helpful, especially if the patient’s coming on a Thursday or Friday, we’re not open generally on the weekends to give chemo, so we’ll make sure that we get them scheduled that following week. Again, getting these patients to treatment very quickly can help them feel better quickly.

Dr. Nicole Rochester:

Wonderful, thank you both. So I’m going to go back to you, Dr. Seetharamu. What are the gaps in current research regarding patient-centered care in small cell lung cancer, and how can these gaps be addressed?

Dr. Nagashree Seetharamu:

Yeah, I think I alluded to this a little earlier, but the…mean, this is kind of a pitch for funding agencies. I think the funding, first of all, it starts there. I think the funding that is available for other types of cancers perhaps is not so much for small cell. Despite decades of extensive research, we are still kind of stuck in the same regimen that we used to use decades ago, with a few modifications. So, first of all, novel treatment ideas, novel treatment regimens definitely can be hugely beneficial for these patients.

Secondly, it is also making sure that patients are actually able to get enrolled in the studies. A lot of these studies are overly exclusionary for reasons that it shouldn’t be. And, for example, if a patient receives a treatment as inpatient, like Ms. Sandy said, a lot of our patients get treated in the hospital, and they get excluded from the first-line regimens many times. So that’s something that can be accommodated. Clinical trials should be tailored around real world experience, not just based on what might be beneficial in preclinical models or some early experience. That’s the second thing.

Thirdly, I think small cell lung cancer, while we use the same term, I think it’s a heterogeneous disease. Using biomarkers to kind of stratify patients or subgroup patients, and then tailor regimens specific to, for example, when a transformed small cell lung cancer, when non-small cell lung cancer transforms to small cell, it’s still small cell lung cancer. From a histological perspective, it looks very similar, biologically it’s a very different disease. So I think it is important to kind of stratify or differentiate those subgroups and then create clinical trials that are more specific, you know, patient-centric like you mentioned. And I think lastly, mostly it’s important to make sure that the disparities are addressed. The socioeconomic disparities, racial barriers are addressed while we are talking about small cell lung cancer research. I think it should be an integral part of every clinical trial.

Dr. Nicole Rochester:

Absolutely. Thank you for highlighting that, Dr. Seetharamu. So, Sandy, we’ve been talking about the barriers that patients face with regard to treatment. Can you speak to some of the obstacles or barriers that are faced by healthcare providers with regard to treatment for small cell lung cancer?

Beth Sandy:

Yeah. Well, there are a couple ways to look at it. First, if you just look at a clinical trial perspective, sometimes it’s hard for us to enroll patients with small cell lung cancer for several reasons. You know, when we enroll in a clinical trial, a lot of times we need to wait for a slot to open. Well, we don’t have time to wait for a slot when they have small cell lung cancer. Again, it’s a very aggressive disease that’s rapidly moving. So we run into this barrier all the time here because they’ll say, “Well, I have a slot that opened up in three or four weeks or four weeks.” I don’t want to wait that long to treat my patient. So I think when we design these trials, we have to think about those kinds of things.

Another point of putting patients on clinical trials is a lot of trial ineligibility criteria is for patients with brain metastases, but in small cell lung cancer, we know that like up to 75 percent of them are going to develop brain mets over the lifetime of their disease. So it’s not really a real world trial if we exclude patients with brain metastases. So we need to design our trials in a good way.

There are a lot of other barriers that we end up facing. Some of the treatments for small cell lung cancer, especially a very new treatment that’s a BiTE therapy, a bispecific T-cell engager, is very hard to administer. It requires an overnight admission for the first two treatments, it has taken us actually a pretty long time to operationalize how we were trying to give this, so it’s not easy. And we finally have figured out how to give this, but this is a drug that holds a lot of promise for our patients, but it is hard for us to administer, and it’s hard for patients as well, because then they have to say, “Oh, I have to block off an entire day for this.”

So, some of these treatments are not easy. Most treatments for small cell lung cancer are not fancy targeted therapies that can minimize toxicity. These are chemotherapies that can cause nausea, fatigue, lowering of blood counts, the majority of the treatments. So if our patients aren’t healthy, robust, and able to deliver, or we can deliver the treatment, but they’re not able to handle the treatment, that’s also worrisome and can cause a barrier for us. So they’re not easy treatments. We need to really do our best to help support the patient and help figure out from an operationalization, there I made up a word, [laughter] but standpoint on how we can administer these safely, but in a quick, efficient way to these patients.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. So both of you have really done a great job elaborating the many barriers. The barriers that patients face, the barriers that healthcare providers face. Are there any tactical strategies or things that either of you or your institutions have done to actually address some of these barriers, some of the challenges that you all have mentioned?

Beth Sandy:

I mean, for us, our nurse navigator is huge. She is a dedicated lung cancer nurse navigator. She’s looking at these patients in advance, when they’re new patients and really trying to say, okay, if they have small cell, we need to get them in quickly. You know, if our new patient wait is two weeks, she’ll say, “Well, this one needs to be prioritized. We need to see them within a week.” She’ll say, “We need to make sure that we have the ability to treat them within a week. We want to really get on top of that quickly.” So that’s been, I think for us, one of the biggest helps with small cell lung cancer.

Dr. Nicole Rochester:

Wonderful. You have anything to add, Dr. Seetharamu?

Dr. Nagashree Seetharamu:

Yeah, I mean, it’s… similarly I think our navigator program is extremely helpful. In addition to that, I think, I know with the bispecific that was mentioned, you know, the tarlatamab-dlle (Imdelltra), we have a process in place, where it’s very streamlined, patients get admitted. The whole protocol is in place for admission and then subsequent treatment as outpatient.  With larger centers where there are multiple, larger institutions with multiple centers that might be a little smaller and not able to monitor patients while they’re receiving this treatment, we have adapted this approach where the first two treatments are given at the main hub, and that’s also been adapted by a few other institutions in the neighborhood where they refer the patients to us just for those first two infusions and when patients are settled and ready to continue the treatment, they’re able to continue it in a more community-based setting.

So that’s something I think that can be done in those regions where patients are referred to places where you can call hubs where these treatments can be initiated and then continued in their regional places so not to inconvenience the patients.

I think for this particular cohort of patients, social work involvement is extremely helpful, in addition to addressing the support systems, transportation assistance, financial support systems, and then involving palliative care early on has been something that has been extremely helpful. This is a multidisciplinary disease, despite that the majority of the patients are on systemic treatment, it is a multidisciplinary disease. We have multiple, we touch minor patients, touch multiple departments. And again, the role of nurse navigator is extremely helpful, because they can help make sure the patients are not inundated by these appointments.

Dr. Nicole Rochester:

Thank you both. Thank you very much for sharing that. So we’re going to shift a little bit and talk about strategies and innovations that may offer enhanced care for patients and families facing small cell lung cancer. We know that survival outcomes in small cell lung cancer remain challenging as both of you have pointed out, particularly for those with extensive stage small cell lung cancer despite incremental improvements in treatment strategies. For your colleagues that are watching this program, what are some strategies and innovations that may offer improved survival outcomes? Now I’ll start with you, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

I think having your group in place, identifying the providers that are dedicated to this disease. Making sure there are processes in place from early diagnosis through the treatments and seeing multiple providers is in place. Making sure that every treatment, there’s a pathway attached to it, there’s a protocol attached to it so that we are not scrambling last minute. Like Ms. Sandy said, it’s the same issue. It’s a three-day regimen. The first line, we want to make sure that, you know, the treatment starts. We are open on Saturdays too.

So, you know, it has to be Monday through Thursdays. You know, simple things as that may become very challenging. In patients with the brain metastases, making sure that they see the providers also in a very timely fashion. Sometimes the urgency may not be realized by other providers, because they’re not used to just seeing small cell lung cancer patients. Just making sure that that is communicated with teams. Yeah. I mean, just streamlining the processes as much as possible. Empowering the patients to understand their disease and making sure that they ask the right questions and be, you know, willful, you know, like complete participants, partners in the care, are some of the strategies that I can think of.

Dr. Nicole Rochester:

Thank you, Dr. Seetharamu. And certainly with this being in Empowering Providers to Empower Patients, we love that you included that, having the patients as partners. Do you have anything you’d like to add, Dr. Sandy…do you have anything you’d like to add, Ms. Sandy?

Beth Sandy:

You know, I think looking ahead for clinical trials, new drugs, it’s been really hard in small cell. We don’t have nearly the advances that we’ve seen in non-small cell lung cancer as far as any targeted therapies. Dr. Seetharamu talked about this earlier is that maybe we could figure out some of these different subgroups by looking at their pathology and seeing if some of them may respond differently to certain agents. I’m hopeful about some new drugs that are coming down in the pipeline.

There is an anti-TIGIT agent combined with immunotherapy that looks hopeful, that could produce some good outcomes. Combining immunotherapy drugs, combining them with chemotherapy, you know, potentially down the line we’ll see some of these drugs that will get approvals in small cell lung cancer and improve some of our progression-free survivals and hopefully overall survivals. So just continuing to enroll patients on studies. Have studies designed to fit this patient population, which we’ve significantly lacked in the past 30 years in small cell lung cancer.

Dr. Nicole Rochester:

Thank you. Thank you, Ms. Sandy. And you brought up the clinical trials, and so on that same topic, Dr. Seetharamu, do you have anything to add with regard to really improving access to clinical trials for patients with small cell lung cancer.

Dr. Nagashree Seetharamu:

Yeah. I think bringing clinical trials to the communities is perhaps the biggest way to do it. You know, patients with small cell, many can travel, but there are many that cannot.  So it’s important to understand that making it easier for patients to know what trials are available. Right now the options that we have, the websites that we have, it’s hard even for a provider to kind of navigate through it. Making it easier. Advocacy groups, you know, ensuring that patients are tied to advocacy groups, because they get a lot of information from these groups. It’s important. And I encourage patients to join these groups, because it empowers them and kind of unifies their voice.

There are clinical trials that are looking at doing labs at home or in their local centers, so they don’t have to travel all the way to the main center to get the labs done. That can be a huge help for patients. And again, making sure that clinical trials, when they’re designed, they are adaptable to real world, you know. And Ms. Sandy brought this up before, we don’t want trials that only address the cream of the…you know, like just a small proportion of patients. It should be really viable for the larger community. Yeah. I mean, these are some…I am sure there are many other things that can be done, but I think this would be a good start.

Dr. Nicole Rochester:

As we move to our final topic, I’m going to go to you, Ms. Sandy. We’re going to talk about outdated clinical approaches. How can interdisciplinary care teams and integrated care models be optimized to better address the specific needs and gaps in the management of patients? And what are some successful examples of these models in practice?

Beth Sandy:

So when I think of outdated clinical approaches, I think of things like older chemotherapy regimens or ways that we used to manage toxicity that have changed. So, for example, when I started doing this 20 to 25 years ago, we had two drugs, and that was it. There was nothing else really, and you could throw some other chemotherapies, but, you know, really now we have approved agents that have improved survival, so we need to make sure we’re using the right thing. And then I think the other flip side of that is our ability to manage toxicity. Again, we have much better ways to manage things like nausea, things like neutropenia, even fatigue.  We have better ways of predicting and managing these things now than what we used to have.  So we need to make sure that our supportive care is also maximized so that the patients can stay on treatment, because small cell lung cancer is one of the diseases where treatment is really important, that they’re getting as much of the chemotherapy as possible and on time.

Whereas in non-small cell lung cancer, I may be a little bit more, you know, okay with them taking a trip or being delayed or things. But because this is such a chemo-sensitive disease, it’s really important for us, if they want to be aggressive, to make sure that we are maximizing our toxicity management. Otherwise, they’re not going to be able to get these treatments.  And that’s gonna definitely worsen their outcomes. I think also is discussing goals of care with patients. And I think there’s been a big push in the past 10 years with the early palliative care integration into our lung cancer practices. This is another thing that’s really important here, that we are having real conversations with our patients about the goals of their care. With extensive stage small cell lung cancer, our average survivals are a year or two even with treatment.

So, you know, I don’t need to say to a patient on the first visit, like, you know, this is the exact numbers, because I don’t want patients to perseverate over, you know, exact numbers. But I also think it’s important to say, you know, this is something that we can’t cure, and we’re going to try to manage it as long as possible, but it’s an aggressive disease.  So, you know, what are your…what’s important to you? What are the goals that you would like to see? And that would give an open-ended question for patients to say, well, I’d like to be alive in 10 years for this. And when they say something like that, that might be an opportunity to say, well, I hope that that can happen, but I’m really worried with what we know about this disease, that that might not be, you know, realistic. So what do you think in the short term your goals are?

And that may be an open-ended question too, where they might say, you know, I don’t want to be sick or in the hospital. That’s really important that I’m at home, or that I can do this or that. So this is a disease where we’ve been really well-trained just in the past five to 10 years about how to have these discussions with patients that I would say 20 years ago when I started, we weren’t, I don’t think personally I was as good at having these conversations, and I don’t think we were as well-trained in the profession at this. And we found that this has been extremely helpful for a good patient-provider relationship as well as patient-centered care when they’re making decisions along with us.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And certainly as we talk about how to empower our patients, that shared decision-making that you talked about and incorporating goals of care is incredibly important. Dr. Seetharamu, do you have anything to add with regard to shared clinical decision-making or any other advances or things that address outdated treatment?

Dr. Nagashree Seetharamu:

Yeah, I can’t emphasize how important it is to have the goals of care discussion, but I think, you know, even though the treatment regimen has not changed for first-line much, there have been some nuances to it, right?  We are routinely including immunotherapy in first line. We now have some supportive care. Trilaciclib (Cosela) is something that we use for patients to help support and prevent admissions. These are things that may not be done, and there are some insurance barriers. Trust me, we are on the phone a lot of times that we shouldn’t be, you know, trying to get something approved despite clear benefit and FDA approvals. So, yeah, that’s a barrier that I should have spoken about, probably number one.

But that aside, I think, you know, that’s one thing that we see that is done a little differently in the community. I spoke about tarlatamab-dlle (Imdelltra). You know, many people just jump to different treatments because they just feel like it’s not…they’re not able to offer these newer treatments because of inpatient monitoring, what have you. So they may just start from a Platinum-etoposide to giving them, again, the same regimen or jumping to, you know, topotecan (Hycamtin), which we know that, you know, can…there can be better regimens than that. There are some newer agents that people may not…I’ve seen that in underutilization of some of the newer. We don’t have a lot of approvals in this space, but even the ones that have been approved, there’s relative underutilization of it. So I think education of providers in the community setting is helpful.

Dr. Nicole Rochester:

Thank you so much. Well, it’s time to wrap up our roundtable. I have learned a lot. I’ve really enjoyed this conversation with the two of you. And so now it’s time for closing thoughts. So I’ll go to you, Ms. Sandy, what would you like to be your takeaway message? What’s one of the most important things for our audience?

Beth Sandy:

I think one of the most important things is don’t write off your patients with small cell lung cancer. You know, it’s an aggressive disease. It can be hard to manage. They have a lot of comorbid conditions, but some of these treatments can work well, especially the newer agents. And so, you know, really working with your patient to keep them on therapy, but while at the same time understanding what their goals of care are and continuing that discussion throughout your patient-provider journey, and continuing to understand what their support systems are, what is important to them, and then that will help you and the patient make these treatment decisions along the way.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And what about you, Dr. Seetharamu, what are your closing thoughts?

Dr. Nagashree Seetharamu:

Yeah, I agree with Ms. Sandy on everything that she said. I think emphasizing the importance of multifaceted approach to overcome practice barriers, from reducing stigma and improving access to diverse patient populations, improving clinical trial inclusivity, and closing healthcare disparities perhaps are top strategies. And then, you know, for future, it’s just a call to action, you know, for improving funding for clinical trials and to also, you know, try to see if there are programs that can mitigate disparities that we see.

And then we spoke about stratifying patients, you know, making it a more personalized care, just as we do for non-small cell lung cancer these days with all the novel information that we have so far, and making sure that every patient, no matter where they are, who they are, receive optimal care that they should.

Dr. Nicole Rochester:

Well, thank you both again, Dr. Seetharamu, Ms. Sandy, thank you for this incredibly informative conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks for watching.


Share Your Feedback

Considering a Myeloma CAR T Cell Therapy Clinical Trial? Here’s What You Should Know

What should you know before joining a CAR T-cell therapy clinical trial? This animated video shares key advice to help guide discussions with your healthcare team and reviews factors to consider before enrolling in a trial.

Related Resources:

Myeloma CAR T-Cell Therapy | How Is Success Measured?

Myeloma CAR T-Cell Therapy | How Is Success Measured?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials? 

CAR T-Cell Therapy | Transforming Myeloma Patient Care

CAR T-Cell Therapy | Transforming Myeloma Patient Care 

Transcript:

CAR T-cell therapy has revolutionized care for people with myeloma in recent years. This treatment is an innovative form of immunotherapy that modifies the patient’s own T cells to target and destroy cancer cells. While there are FDA-approved CAR T-cell therapies for myeloma, ongoing clinical trials are helping to expand this therapy’s use.  

If you or a loved one is considering participating in a CAR T-cell therapy clinical trial, these questions may help guide your conversations with your doctor and support decision-making: 

  • Am I a candidate for any CAR T-cell therapy clinical trials? 
  • How do the potential benefits compare to my current treatment options? 
  • What side effects should I expect if I participate in the trial, and how will they be managed? 
  • What phase is the study, and how might it impact my care? 
  • What is the time commitment involved, and where will the trial take place? 

When deciding whether or not to participate in a CAR T-cell therapy clinical trial, it’s crucial to weigh the pros and cons with your healthcare team to determine if this approach aligns with your treatment goals. You should also discuss your options with a care partner, such as a friend or family member.  

Before enrolling in a trial, consider these factors: 

  • Ensure you have a reliable care partner to assist you during and after treatment. In most cases, a care partner is required for patients undergoing CAR T-cell therapy. 
  • Understand the costs involved. For some trials, the sponsor may cover a portion of the cost. Ask about financial resources that may help with participation, such as transportation or lodging assistance. 
  • Be sure to review the informed consent process carefully. This form will outline the trial’s purpose, potential risks, benefits, and your rights as a participant. 
  • And you should understand that participation in a clinical trial is voluntary. You have the right to leave the trial at any time, for any reason.  
  • It’s also a good idea to understand what to expect before, during, and after the clinical trial process. Taking steps to prepare for life outside of treatment can be highly beneficial, and can support positive mental and emotional heath. 

Taking part in a CAR T-cell therapy clinical trial offers a unique opportunity—it could provide access to advanced therapies and support critical cancer research. Reflect on how trial participation fits in with your personal treatment goals, and be sure to include your care partner and healthcare team as you make decisions.  

Remember, it’s important to stay proactive and informed. Whether you join a CAR T-cell therapy clinical trial or explore other treatment options, make choices that prioritize your well-being and support your journey forward. 

For more information about CAR T-cell therapy and clinical trial participation, visit the Patient Empowerment Network at PowerfulPatients.org. 

Myelofibrosis Clinical Trials | The Benefits of Patient Participation

How do clinical trials fit into a myelofibrosis treatment plan? Dr. Idoroenyi Amanam discusses the benefits of clinical trial participation and advice for patients who may be hesitant to join a trial. 

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

Download Resource Guide

See More from Evolve Myelofibrosis

Related Resources:

Myelofibrosis Therapies in Clinical Trials | BET Inhibitors

Myelofibrosis Therapies in Clinical Trials | BET Inhibitors 

Considering a Myelofibrosis Clinical Trial? Questions You Should Ask

Considering a Myelofibrosis Clinical Trial? Questions You Should Ask

How Can You Learn More About Myelofibrosis Clinical Trials?

How Can You Learn More About Myelofibrosis Clinical Trials?

Transcript:

Katherine Banwell:

Dr. Amanam, where do clinical trials fit into a myelofibrosis treatment plan?  

Dr. Idoroenyi Amanam:

When you think about where we’re at right now in myelofibrosis, I think  from the scientific standpoint, it’s really exciting.  We’re understanding this disease so much better.  We have  a much clearer picture of how this disease works.  

But with that said, unfortunately, when you look at the drugs that we have available to us, we don’t really have that many still,  and so clinical trials play a big part in this disease space. Because there’s patients who are  very advanced when we diagnose them, and our FDA-approved therapies may not really make a big dent in their symptomology, may not change  what happens with the disease moving forward. And so, clinical trials do give patients such as that an opportunity to actually  get the disease under control. 

Katherine Banwell:

Well, as you mentioned, patients participating in trials are key to moving research forward, right? Can you talk about the benefits of clinical trial participation?  

Even though it – 

Dr. Idoroenyi Amanam:

Yeah – 

Katherine Banwell:

– might be scary for a lot of people. 

Dr. Idoroenyi Amanam:

Right, right. 

Katherine Banwell:

I think a lot of people still think, “Oh, I’m just going to get a placebo, and it’s not going to help me in any way,” but that isn’t really the case anymore, is it? 

Dr. Idoroenyi Amanam:

It’s not the case.  And I think the way that you can think about trials are, we use trials to give therapies that we view as very promising to patients who fall in a gap. And that gap may be that, even though we have FDA-approved drugs, we know that those drugs really may not work for that specific patient. And so, we have an understanding from either a different type of disease that’s very similar to myelofibrosis, or  our  scientific experience that there is a therapy that will work. And we want to use trials to be able to give that patient a chance to, kind of, get over that hump. 

And so, in today’s era, we don’t structure trials around therapies that we don’t believe actually work or  getting patients in trouble down the line. And so, we really, really do believe that our trials are, kind of, an extension of what we have currently  on the market, and so it is a part of our everyday armamentarium to fight this tough cancer. 

Katherine Banwell:

What would you say to patients who are hesitant of participating in a trial?  

Dr. Idoroenyi Amanam:

One, I’d really want to get a clear sense of what their hesitance is.  Is it that the trial would put them at higher risk for some sort of toxicity?  Is it that they’re worried that there’s some other therapy that’s out there that, potentially, would give them a better chance at fighting this disease? the third part of it, the unknown, is always scary for many people.  

And I think my job is to be a part of a patient’s team.  Talk through those concerns, get a sense if this is something that really is the best thing for them, or do we have something else that might be a better option? And unfortunately, there are some instances where I do believe the trial is the best option for a patient, but the patient does not feel comfortable, and we have to go down another path.  

And all of us, we will never force a patient to go down a path that they don’t feel comfortable with. We all believe in patient autonomy, but there are some instances where   the trial may be the best opportunity, and I will do my best job to advocate for that and come to a decision together with the patient. 

Myeloma Research | Updates in CAR T-Cell Therapy

 What is the latest in myeloma CAR T-cell therapy research? Dr. Rahul Banerjee, a myeloma specialist and researcher, discusses advances in the field including progress in improving the CAR T manufacturing process and the role of clinical trial participation in developing new myeloma treatments.

Dr. Rahul Banerjee is a physician and researcher specializing in multiple myeloma and an assistant professor in the Clinical Research Division at the University of Washington Fred Hutchinson Cancer Center in Seattle, WA. Learn more about Dr. Banerjee.

Download Resource Guide

Related Resources:

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

Advice for Inquiring About Myeloma CAR T-Cell Therapy Clinical Trials

Advice for Inquiring About Myeloma CAR T-Cell Therapy Clinical Trials 

Transcript:

Katherine Banwell:

Can you share any updates in CAR T-cell therapy research? 

Dr. Rahul Banerjee:

Sure. So, several. I would say the first was how do we make that vein-to-vein time shorter? So, the vein-to-vein is, again, from the moment that the T cells are collected to when they’re put back into the patient.  

And so a lot of research is how do we make that better? We have rapid manufacturing protocols that, again, where the T cells are taken out and manufactured within a couple of days and brought back into the patient. They’re still testing for safety and sterility and everything that needs to be done, so it’s not overnight, but still, one or two weeks’ worth of vein-to-vein time is way better than one to two months. 

The allogeneic CAR T cells that are coming from a healthy donor, those are fascinating, right? Because if the cells are pre-manufactured, there’s no risk of them not manufacturing or manufacturing in an odd manner, what we call auto-specification. They’re ready from a healthy donor, ready to go. 

And one of the studies that was presented last month at our International Myeloma Society meeting in Brazil, the time, the median time from when the patient went on the study to when they started that lympho-depleting pre-CAR T therapy was one day, and that means they got CAR T therapy within one week of going on the study. That’s phenomenal. And so I think that research is ongoing.  

There are some side effects about allogeneic, healthy donor CAR T cells in terms of making sure the T cells stick around and don’t cause other issues. Sorry, for another day. I think that’s one area of research.  

 I think the other big area of research is how do we make CAR T cells work for longer for more people? There are easy ways, and there are controversial ways to do that. So, I think the easy way is can we use MRD negativity or other tests to identify who is at very low risk of relapse and monitoring them appropriately.  

There are patients where, in the future, we may talk about doing some form of post-CAR T maintenance therapy.  

Again, the bar for that should be set pretty high, and it is set pretty high because as I mentioned earlier, many patients prefer CAR T therapy, not just because of the deeper remissions and longer remissions, but because it truly is time away from treatment. But they’re still coming in for the IVIg and the blood work and seeing a doctor, et cetera, but they’re not getting daily treatment with lenalidomide, which is Revlimid, or pomalidomide, or Pomalyst, or something like that. And that’s wonderful. 

However, there may be some patients where some form of strategy will use one of those medications or experimental medications. There’s a newer class of the lenalidomide, Revlimid, pomalidomide, Pomalyst called CELMoDs.  

They’re not approved yet, but drugs like iberdomide or mezigdomide that work better, and not just against the myeloma. They actually make T cells stronger, believe it or not. 

And so in the future, there may be scenarios where we recommend for certain patients that, hey, in your particular case, after CAR T therapy, to keep the myeloma away, I’d recommend using this form of maintenance, a pill or something like that, just low dose to, again, keep the myeloma at bay and keep the T cells, in this case, the CAR T cells strong. So, I think those are all areas of exciting research.  

And then the last thing I would say is, we have several novel CAR T therapies that are being studied that may work better and safer than the existing products. Some of them, which are in early phase studies, actually target two proteins at once. The idea, going back to one of the earlier topics I mentioned, is that if the CAR T cells see that protein BCMA, they immediately destroy the cell that’s holding that. But what if the cell learns to turn off BCMA? All of a sudden, it’s invisible to the CAR T cells, and you’re right back to starting square one again. 

And so the idea is that there are CAR T cells that are being developed that target two proteins at once, kind of what’s called origating, where if it sees this or this, it’s immediately able to attach and bind that cell.  

The idea being that it’s easy for a myeloma cell – not easy. It’s possible for a myeloma cell, just by dumb luck, bad luck for the patient, to mutate in a way that shuts off that one protein. For it to simultaneously be able to do that for two separate proteins at once, the odds are much lower.  

And so the idea with dual targeting is you may be able to knock out more cells more durably, or even knock out the myeloma precursor cells that aren’t quite myeloma cells, but are there, what we call stem cells under the hood that are still malignant? So, a lot of those areas, I think, are really fascinating. Obviously, we need a lot more research in those particular areas before they’re ready for prime time.  

Katherine Banwell:

Patient participation is essential in advancing myeloma research. How do clinical trials impact care? 

Dr. Rahul Banerjee:

Absolutely. So, phenomenally and importantly, I think it’s a short answer. It’s worth noting that clinical trials come in all shapes and sizes. People often assume that clinical trial means, by default, a Phase I study, first time in human being, a quote-unquote “guinea pig.” That’s true for a minority of studies, and that’s very important for us to understand how best to make the drug work better. I would say the vast majority of trials that I put my patients on are not like that. They’re often bigger Phase II or Phase III studies. 

As an example, you know, both ide-cel (Abecma) and cilta-cel (Carvykti), those were already approved in later lines, but to get them approved in earlier lines, we had to run a study of using them earlier versus not using them earlier. So, that’s a good example where the drug is FDA-approved, it’s just the sequencing of it that’s new.  

There are trials of supportive care. We’ll be opening a study, I alluded to this, the side effects of GPRC5D targeted therapies with taquetamab (Talvey).  

We’ll be opening a study that randomizes patients to one of four different supportive care strategies to figure out which one actually works to make the taste issues better. Because we don’t know until we try, right? If we don’t do a rigorous study, and we just go by, “Oh, I had one patient once where this worked, and one patient once where this worked,” that’s not a scientific way of answering questions, and we’re not really able to advance the field to help all patients.  

So, that’s where I think clinical trials come in handy. That, and I alluded to all these newer investigational CAR T therapies that might actually work better and be safer than the existing one. They’re all coming through investigational trials.  

So, trials is kind of how we get these drugs, one, these newer ones to market, but also how we learn to make them better. And we have trials, all sorts of trials, looking at all sorts of, again, not just new drugs, but also where to put the drugs, right? Where to sequence the CAR T therapies, or what supportive care strategies do we use? And the trials are kind of the linchpin of making the field work better. Again, not just for some patients who happen to do well, but for all patients. The only reason we’ve found out what works for all patients is by doing clinical trials.   

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

How can you best care for a loved one who is undergoing bispecific antibody therapy? Dr. Craig Cole, a myeloma specialist, provides key advice for care partners emphasizing the necessity of taking notes and for having a solid plan if issues arise, and he shares key questions to ask the doctor about bispecific antibody therapy.

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Transcript:

Katherine Banwell:

Dr. Cole, what sort of questions should care partners be asking the care team when a loved one is undergoing bispecific antibody therapy? 

Dr. Craig Cole:

I think one of the big questions and – oh first I would say write everything down. Write everything down and have your care provider write things down or record them. Because I think it’s important to have that – have something written on hand. In our house we put everything on the – instructions on refrigerator with a magnet to make sure everyone sees it. But the one – one big question to ask is, “What are the – with this specific antibody that the patient’s receiving, what is the risk of the of the cytokine release syndrome?  

What’s the risk of the neurotoxicity that we talked about in the timeline?” Because those can be very different. “When should I worry? And how long should I be watching for these side effects?” The other thing is to have a solid plan of what to do if there are – if there’s any side effects. And so frequently that doctors or providers will write a prescription for steroids or Tylenol to take if any of those symptoms happen, but also to have a phone number to call a provider or to call the clinic if something were to change. Because again, these aren’t symptoms that you want to sit on where you say, “Oh, I have a fever, no big deal.” I mean it’s definitely good to call, and so, having a plan set. And I would make sure that you have that written down and then talk back, repeat back to the doctor or the provider that the plan is set.  

It’s not a forever plan. It’s just doing those first few doses of the bispecific. And also knowing sort of – I think a really good question is knowing the long-term efficacy of these. I mean these therapies are – work really, really well, but also knowing what are the chances of this working, of it not working? And I always like to have a plan B. “If this doesn’t work well, what are we going to do next?” And I think that’s a very fair question to providers. 

Katherine Banwell:

Dr. Cole, is there anything else you’d like to add about caring for someone who’s being treated with bispecifics? 

Dr. Craig Cole:

I think that the biggest thing is how incredibly exciting these medications are. I mean, there are – I went through and talked about a lot of the bispecifics for cancer, but there have been revolutionary biospecifics for macular edema, for hemophilia, the bleeding disorder. And these are revolutionary drugs in cancer. And really, it’s incredible that – how well these drugs fight cancer. And the fact that they use your own immune system, not someone else’s immune system, not some chemotherapy, but using your own immune system is incredible. And so, I always tell people to be really encouraged that the technology is this – if you’d have asked me this 10 years ago about a bispecific antibody I would say that’s impossible.  

And now we’re at the cusp of that. And the other thing is to be involved in clinical trials, that all these, a lot of – there are a lot of clinical trials and bispecifics because it is the big, exciting thing. And so, if you have the opportunity to participate in a bispecific clinical trial, I would definitely encourage that because it really is the cutting edge of medicine these days.  

Understanding Clinical Trials and Associated Cost and Mitigating Financial Stress

Remember the law that passed 2 years ago that prevented medical debt of under $500 from hitting your credit report? That was good news for many people. That, however, doesn’t stop debt from actually happening while potentially compromising your financial future. Let’s take a look at medical debt in the United States and how it is distributed, and what can you do to mitigate the effects of medical debt.  

Clinical Trials: There are several ways to find a clinical trial. You can find them yourself or you can work with your health care team to identify a clinical trial that might be a good fit for you. Some of the resources available to help you find a clinical trial are: 

 It’s very important to talk with your healthcare provider as well as your insurance company to find out what they will pay and what labs, scans or other medical procedures will not be covered under the clinical trial. The Patient and Affordable Care Act requires most private insurance companies to cover the routine costs of your health care when you participate in a clinical trial. The routine costs include office visits, blood tests, and imaging scans that you would receive if you were getting the standard of care. Remember, your insurance company cannot drop your coverage or refuse to let you take part in the clinical trial.  Also, you need to be aware of other associated costs such as: Any research costs that are specific to the trial are not required to be paid for by your insurance company. Check with the trial administrator to see if they will cover these costs. If you are participating in a clinical trial that is out of network, your insurance company is not required to pay for the associated cost if they would not normally cover out-of- network providers. Some insurance carriers will pay at a lower rate, resulting in you having to pay more out-of-pocket. 

For other insurance providers such as government programs includingMedicare, military, and VA plans, different rules may apply. To review coverage go to: cancer.gov/about-cancer/treatment/clinical-trials/paying/federal-programs. 

If you are covered under Medicaid, Medicaid will cover your routine associated costs with the clinical trial. You cannot be denied coverage based on where the clinical trial is conducted or whether the provider is in or out of network. For more information go to: www.medicaid.gov  

  • Location of the trial, which may require additional costs for travel, parking, ground/air, lodging, food, etc. 
  • What is the time commitment and how will it impact your ability to work or care for your family if you need to take time off for an extended period of time, will you still be able to meet your financial obligations? 

What happens if your insurance company says no? 

 First, don’t give up. A large percentage of coverage requests and claims are paid on appeal.  

Again, you will need to file an appeal if your insurance company won’t pay treatment costs. You can contact the drug manufacturer or advocacy groups for assistance. Also, have your healthcare provider reach out to them as well. Your doctor can also file a letter with the appeal telling the insurance company about the benefits of the trial. They can include information about other insurances who have paid for the trial. 

If you need assistance with filing the appeal of your claim, go to: 

I have heard many times patients say, “I don’t want to take money from people who need it more than I do” when they are in situations where they really need it. Non-profit grants used to assist patients with the cost of co-pays, deductibles, insurance premiums, coinsurance, travel and many other needs already have been vetted for the patients they want to serve. If you qualify, then don’t hesitate to seek them out.  

Don’t forget to seek financial assistance from local organizations as well. A number that people seem to forget they can call 211 to inquire about local assistance programs. 

You all probably have heard or even know someone who has resorted to Go Fund Me to raise money to pay for medical bills. Go Fund me has become a standard resource for raising money to pay for medical needs. It’s unfortunate that the need is so great.   

As with many things, the people who are most harmed by the high costs of medical care are those who are already disparaged. Mainly people of color.  

Asking about your treatment options as well as the associated costs before participating in a trial, or getting treatment is key in advocating for yourself. And seeking out help understanding your insurance coverage as well as other available resources is the key to better and sustainable treatment as well as reducing financial stress.   

Sources:  

https://triagecancer.org

https://healthtree.org

https://www.medicaid.gov

https://www.patientadvocate.org 

Estate Planning: Secure Your Future, Protect Your Legacy

Estate Planning is probably the least understood area of financial planning. It is also possibly one of the most important components of a solid financial plan. Many people think it is only for the rich, or it can be done later when you’re older. Neither of these are true or wise! There are many benefits to estate planning that are beneficial to you when you are alive.

Your estate is everything you own, minus everything you owe. Everyone has an estate! 

Estate Planning

Estate planning is a well thought out action plan you can use to determine what happens to your assets, such as house, car, savings, businesses, and other valuables as well as your obligations, (debt) while you are alive and after you die.

It is very common for even people with a lot of financial resources to not have any plan in place when they become sick or die. You’ve heard of celebrities like Prince or James Brown that have plenty of money but failed to plan. 

Therefore it is important for everyone to make sure that all of your resources are working, and that there are no gaps or weaknesses that will surface at the moment we need to be concentrating on other things such as your health and recovery. 

A Will 

This is one of your first lines of defense in estate planning. This is a legal document that outlines how assets are distributed, who takes care of children and pets, and other wishes you may have after you die. 

An Executor

An executor is a trusted person you appoint to manage your affairs after death. You should make sure this person is competent and able to manage these affairs as they can become quite complicated. Appearing in court, getting inventory evaluations, debt information collection, valuable papers, are only some of the responsibilities that are required of the executor, 

A Power of Attorney

Not only is it important to “get your affairs in order” in the event of death, but there are many estate planning tools to help you manage your finances while living. For example: A Medical Power or a General Power of Attorney.

A durable power of attorney can help you protect property in the event an individual becomes unable to handle financial matters. It also allows that person to authorize someone else to act on his or her behalf to do things like pay everyday expenses, collect benefits, watch over investments and file taxes. The power of attorney must be drawn up by an attorney. This is important. They will keep a copy on file. I would also suggest that the person you name is someone who has your best interests in mind as they will have access to your money. This person needs to be reliable, trustworthy and responsible. Taking the time to identify this person is imperative. 

A Living Trust

A living trust (also known as a revocable trust) is a separate legal entity that protects property and investments. It’s called a living trust because it’s meant to function while a person is alive. The Trust is controlled by the person who creates it, and they can change the terms, transfer money, transfer property in and out of the trust or end the trust altogether. That individual can also name a co-trustee, such as a financial institution or a loved one to manage the assets in case he or she is unable to do so. Do not wait until you are in a crisis to set up a living trust. 

Keep mind, there are many types of Trusts. Working with an Estate Attorney as well as a Financial Planner can help determine which one is right for you. 

An Advanced Medical Directive

An advanced medical directive lets others know what medical treatment is desired, and it establishes who will make medical decisions for the individual in the event they are unable to make decisions for themselves. Depending on what’s allowed by the state in which the person lives, this document may also include a living will, a durable power of attorney or healthcare, and a do-not-resuscitate order.

Planning Ahead

Planning ahead for these things will allow everyone to know in advance what you want. It will allow expenses to be paid without interruption and can give you peace of mind as to how you want to be medically cared for in the event you cannot make those decisions for yourself.

It is possible to make sure you have your assets titled in a way that can help you manage your assets both before and after your death. If you have a lot of assets and different kinds of assets, a financial plan can be your first line of defense in pulling everything together. You should make sure the person you appoint as executor or successor executor as well as appointing a guardian for minor children are aware of your requests and have access to your documents. 

Some estates are simple and others may be more complex, especially when you have blended families. I suggest talking to an estate attorney to give you direction. Planning now can save you thousands of dollars later. 

You can prepare your funeral request in a will. As well as many other considerations.

Imagine the peace of mind you and your family will have when you have prepared in advance. 

I know it isn’t an easy topic to dwell on, but making sure you have everything in order can save a lot of headache for you later and your family at your death. The financial and emotional cost of waiting is too high! 

Sources:

American Bar Association, Real Property, Trust and Estate Law Section: https://www.americanbar.org/groups/real_property_trust_estate/ 

Trust and Will: What is Estate Planning? Estate Planning Basics Patrick Hicks, Head of Legal, Trust & Will: https://trustandwill.com/learn/what-is-estate-planning 

Questions to Ask About Endometrial Cancer Clinical Trials

 

What questions should patients ask about endometrial cancer clinical trials? Dr. Hinchcliff outlines key inquiries regarding trial structure and eligibility and encourages patients to explore online resources and support groups for additional information.

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

 

Related Programs:

Current Endometrial Cancer Treatment Approaches
Advances in Endometrial Cancer Treatment and Research
Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?


Transcript:

Katherine Banwell:  

What questions should endometrial cancer patients ask their doctor about a potential trial? 

Dr. Emily Hinchcliff:  

I think the two important things to ask are what is the structure, what am I actually going to get, or what could I get, depending on how many of those arms exist on the trial. 

Katherine Banwell:  

Would the doctor know that specific information, though? 

Dr. Emily Hinchcliff:  

It’s a good question, actually. So, generally speaking, most of us as physicians, in order to offer a trial to you, we have an overarching structure of that clinical trial. There may be some nuances about what the exact enrollment is in terms of the majority of the patients get this treatment, whereas a small minority get this treatment, or because of this patient’s specific mutation profile, they must be enrolled on this subset of the trial. 

So, there are some nuances there that, generally speaking, if I as the physician don’t know, I will contact what’s called my clinical trial coordinator or my research nurse, and they can come spell out some of those nuances, but if your doctor’s recommending a trial to you, they generally know what is the overarching goal, and what is the overarching treatment being tested. 

Katherine Banwell:  

Okay. How can patients learn more about clinical trials? 

Dr. Emily Hinchcliff:  

So, there are a lot of resources online. To some extent, it can be really overwhelming for patients to try and tease out am I a candidate, would I be eligible for a trial, or this trial, is this trial available at my institution. So, what I would say – first and foremost, ask your physician. I think that your physician is your advocate in this and your partner in your cancer care, and I think that certainly I and all of us as physicians feel really strongly that we can help you weigh those different options as you see them and as we learn about them.  

So, I think that that’s where I would start. I think there are a lot of online resources. The FDA and the government have a cancer trials website that you can go to and search for your specific cancer type. 

Many institutions – my own included – will have their own institutional trials website, where, on my institution, you can look up and see what trials do we have open on my institution, because obviously, the government will speak nationally, but your particular treating physician might not have the availability to give you that particular trial. And then, I also will say I think patient support groups are an incredible opportunity to understand what others have been going through and what treatments have been offered, and that can be a really helpful resource as well to get hooked into as a patient is trying to tease all this out. 

Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

 

What role do clinical trials play in endometrial cancer treatment plans? Dr. Hinchcliff highlights that clinical trials can be crucial at every stage of the cancer journey, offering access to innovative therapies and alternatives to standard care. 

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

 
 

Related Programs:

Current Endometrial Cancer Treatment Approaches
Advances in Endometrial Cancer Treatment and Research
Questions to Ask About Endometrial Cancer Clinical Trials

Questions to Ask About Endometrial Cancer Clinical Trials


Transcript:

Katherine Banwell:  

Dr. Hinchcliff, where do clinical trials fit into a treatment plan for endometrial cancer? 

Dr. Emily Hinchcliff:  

So, I think clinical trials are an incredibly valuable part of a patient’s cancer journey. Every institution and every provider is going to have potentially different clinical trials available to the patients in their practice, and so, it’s important to understand what clinical trials might be available to a patient as they both start their cancer journey, but certainly as their cancer progresses or comes back. 

I think that there is – it should be something that is on the back of your mind at all phases of a cancer journey. It may not be right for a patient if they are first diagnosed and have a clear standard-of-care option, but there are certainly clinical trials that add to or investigate what we consider to be the current standard of care to try and move that forward. So, even in that first diagnosis phase, I think it’s worth asking your doctor, “What’s available to me?” 

And then, certainly, when a cancer comes back, especially when a cancer has developed resistance to some of the more standard options that we would use, then I think clinical trials are an incredibly – it’s an incredible opportunity to have access to a toolbox that you would not have access to otherwise. And so, I think that – when I think about clinical trials, I think that they fit into all phases of a cancer journey, but that there are certain times in every individual patient’s journey that I would say this clinical trial might be right for you at this particular time. 

Katherine Banwell: 

What would you say to patients who are hesitant about trial participation? 

Dr. Emily Hinchcliff:  

So, I think that that is very common, and what I would say is information is power. I think that if there is a trial that you are eligible for, it’s really important to understand what the actual structure of that trial is and also understand what the phase of that trial is. So, let me explain those two things, because I think they’re a little bit different. 

When I think about a trial structure, I think about what is the trial testing, what is it looking at, and what are the potential arms of therapy. When we say “arms,” that just means what is a patient going to actually receive. And so, some trials, there’s only one option. Anyone who’s enrolled on the trial gets a certain thing. Other trials have some comparison arms. So, some patients that are enrolled get a certain treatment; some patients that are enrolled get a different treatment. 

And so, as you think about the structure, it’s important to know what might I get? Am I always going to get the treatment arm – for example, the drug that’s being investigated – is there a placebo arm – an arm that says I might get something that’s standard, like chemotherapy, but I’m going to get chemotherapy plus a placebo, which means an inactive agent, as compared to chemotherapy plus an inactive drug. 

So, it’s really important to understand the structure of a trial. The second thing that I think is important to understand is the phase. So, clinical trials are grouped into phases. Phase I, Phase II, Phase III are the most common that you’ll hear about, and those are a description of how far along is that particular drug or treatment in development. 

So, Phase I, that treatment is very early. It does not mean that there’s not promising data around it, but it means that that drug doesn’t have data, for example, in lots and lots of patients with your particular cancer type, right? Instead, usually, a Phase I trial is looking at a drug in humans or in a particular group of tumors – or patients with a particular group of tumors – for the first time or early on. 

Phase II trials are looking at that drug maybe a little bit later, after they’ve gotten some good data, or trying to expand a drug that might have been used in a different cancer type to a new cancer type, for example. And then, Phase III is the bigger studies where you’re looking to enroll more patients in a specific cancer type for a specific reason to say, “Okay, we’ve had good evidence that this drug has some amount of efficacy, so now we’re really trying to look to see how does it compare to what we have out there, and could this help us move forward?” 

Advances in Endometrial Cancer Treatment and Research

What new developments in endometrial cancer treatment should patients know about? Dr. Hinchcliff highlights advancements in immunotherapy for newly diagnosed patients and ongoing clinical trials focusing on molecular pathways and drug combinations for more personalized care. 

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

 
 

Related Programs:

Current Endometrial Cancer Treatment Approaches
Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

Questions to Ask About Endometrial Cancer Clinical Trials

Questions to Ask About Endometrial Cancer Clinical Trials


Transcript:

Katherine Banwell:  

Are there endometrial cancer treatment developments that patients should know about? 

Dr. Emily Hinchcliff:  

Yes. So, I think within literally the past year/two years, we’ve had some truly groundbreaking work that has changed the way all of us practice in GYN oncology, and that is specifically around this immunotherapy. So, it used to be that we would save immunotherapy for when someone’s cancer had returned. So, they would get their initial, for example, chemotherapy if they needed it, and then, when the cancer came back, that’s when we would start thinking about immunotherapy. 

There are now two big randomized controlled trials, which is sort of our best data, that tells us that adding immunotherapy in the first line, meaning when someone is first diagnosed, if their cancer has spread outside the uterus, that adding immunotherapy at that point can be really helpful for certain patients, and so, I would say that as an avenue of treatment – understanding is immunotherapy right for me, why or why not – is kind of my second takeaway for patients. 

Katherine Banwell:  

You mentioned trials. Are there ongoing trials that are showing promise? 

Dr. Emily Hinchcliff:  

Absolutely. I think it is an incredible time to be a GYN oncologist because the field is advancing so rapidly. 

I think that now, we are really focused on some of these molecular pathways to try and not only understand which patients should we be giving these therapies to, who are they most effective in, which patients can we actually be pulling back, who has a better prognosis, so we may not need to give them the toxicity level that comes with all of the standard chemotherapy options, and then, also, are there drug combinations that may work better for patients, and how do we choose which combination therapies we should use. And so, I think that there are a lot of really exciting clinical trials going on in endometrial cancer right now. 

Katherine Banwell:  

Dr. Hinchcliff, what areas of research are you focused on? 

Dr. Emily Hinchcliff:  

So, I have spent a lot of my research time working in immunotherapy. As you can tell, I’m pretty jazzed about it. I think it really has changed the game in terms of cancer care. And so, a lot of my work centers around the use of immunotherapy in gynecologic cancers. 

I also am very interested in looking at how we can better understand a cancer’s response to treatment. As we give treatment, often, endometrial cancer doesn’t have an easy blood test to say, “My cancer’s getting better,” so we kind of have to wait until we get a CT scan, which we usually do three months apart, and so, there are some newer blood tests out there that we’re trying to understand how to use and how to best leverage for our cancer patients, and that allows us to potentially switch treatments sooner if something isn’t working, or choose a better treatment up front, depending on which test we’re looking at. So, that’s really where my research centers. 

Katherine Banwell:  

Is there anything you’d like to add about the evolution of endometrial cancer care? What are you excited about? 

Dr. Emily Hinchcliff:  

I think I am really excited that our field has made this big switch to focusing on some of these molecular aspects. It has always been so hard to treat all endometrial cancer with one hammer-and-nail-type pairing, and now we’re able to be a little bit more nuanced with our tools, and that’s always a really exciting place to be. I also think that it’s really important to highlight some of the disparities that still exist in endometrial cancer, and honestly in cancer more generally, and I think that we as a field are starting to really highlight that and understand – or at least try to understand – how can we better provide care to every single patient who is diagnosed with an endometrial cancer. 

Elevate | AML Resource Guide

Download Resource Guide

PEN-208_ElevateAML_ResourceGuide

Download Resource Guide

See More from ELEVATE AML

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

 

Dr. John Mascarenhas discusses the evolving landscape of myelofibrosis research, emphasizing the concerted effort among researchers, pharmaceutical companies, and advocacy organizations to advance care and treatment options for patients.

Dr. John Mascarenhas is Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Director of the Center of Excellence for Blood Cancers and Myeloid Disorders at Mount Sinai. Learn more about Dr. Mascarenhas.

See More from Evolve Myelofibrosis

Related Resources:

Updates in Myelofibrosis Research From an Expert

Updates in Myelofibrosis Research From an Expert

How Can You Learn More About Myelofibrosis Clinical Trials?

How Can You Learn More About Myelofibrosis Clinical Trials?

Is Stem Cell Transplant the Only Curative Option for Myelofibrosis?

Is Stem Cell Transplant the Only Curative Option for Myelofibrosis?

Transcript:

Katherine Banwell:

Is there anything you’d like to add about the evolution of myelofibrosis care? What are you excited about?  

Dr. John Mascarenhas:

I always make the comment they don’t feel rare to me because I see so many patients with myelofibrosis, and it’s what I do. But I recognize in the context of lung cancer, breast cancer, other more common cancers, these can be forgotten diseases. But what has been encouraging is, between the NIH funding, for example, our research consortium, which is really geared to translating the biology into clinical trials across the country.  

Pharmaceutical interest, which is essential to providing drugs and finance to run trials. Young investigators that are coming to the field that want to make a difference, institutions that continue to support the programs, and then foundations. Whether it’s MPN Research Foundation, Leukemia & Lymphoma Society, it really takes a village. And we’ve been working with the FDA to try to better understand how to develop trials that are meaningful that can get drugs approved and to the patients. 

So, it’s a concerted effort, and I’ve been enthusiastic. I remain optimistic that everyone is trying to do the same thing, achieve the same goal, and work together, and that’s the only way we’re going to be able to do it. 

Katherine Banwell:

Yeah. How long does it take for the FDA to approve a drug? 

Dr. John Mascarenhas:

Forever. It feels like forever. It’s a long process, and for patients, it can be quite frustrating, because there’s so many steps involved. From just the original, initial steps to allow you to introduce a drug into humans, there are IND-enabling studies, so there’s a lot that goes into this.  

And then the initial studies are safety studies. They often can take quite some time. There’s a lot of scrutiny on safety, obviously, because the FDA is really charging to making sure that we do no harm, that we maintain safety for patients, so that can take a long time. And then the ultimate testing and comparison to a control arm is essential to get a drug approved. 

So, we’re looking at a timeline that can easily be a decade from the time we have a great idea, and have a drug available to us, to the time that we can prove that through the different stages, and then demonstrate that to the FDA and negotiate what a label will look like. And that is both a time-consuming process, a very expensive process, and a laborious process, but obviously an important process. 

Katherine Banwell:

Yes, and as you say, so many new drugs and therapies have become available in the last 10 years or more that really have advanced myelofibrosis care enormously. 

How Can You Learn More About Myelofibrosis Clinical Trials?

 

Dr. John Mascarenhas shares advice for patients looking to learn more about clinical trials starting with consulting a specialist. Dr. Mascarenhas also emphasizes key questions to ask, including a discussion of the benefits versus risks of participating in a potential trial. 

Dr. John Mascarenhas is Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Director of the Center of Excellence for Blood Cancers and Myeloid Disorders at Mount Sinai. Learn more about Dr. Mascarenhas.

See More from Evolve Myelofibrosis

Related Resources:

Myelofibrosis Clinical Trial Participation | How Does It Move Research Forward

Myelofibrosis Clinical Trial Participation | How Does It Move Research Forward?

Considering a Myelofibrosis Clinical Trial? Questions You Should Ask

Considering a Myelofibrosis Clinical Trial? Questions You Should Ask

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Transcript:

Katherine Banwell:

What about clinical trials? How can patients learn more? 

Dr. John Mascarenhas:

Well, clinical trials is definitely a confusing area because there are many clinical trials, and some of them are relevant to some patients may be not relevant to other patients.  

So, I think two ways is, see someone who does this. So, not everyone has as their primary care provider hematologist an expert, or someone who’s dedicated to doing this. They may be in a practice where they’re in the community setting; it’s not reasonable for them to be seen at a tertiary care center. 

But if you can get there even for a consultation or an initial visit to get plugged in, I think it’s really critical to see someone who is really invested in this with research opportunities, and clinical trial availabilities. And then the other resource would be clinicaltrials.gov.  

You can go in there, you can put in your diagnosis myelofibrosis. You can even manipulate it for geography to understand what trials are in your area. 

But it is a good way of looking, just to understand what’s there. And then the MPN Research Foundation, which is very supportive of the patient community and engages them, is often a very good resource to go to, to either learn about trials or join webinars where physicians that do this will discuss, and I think that’s another excellent resource. 

Katherine Banwell:

What questions should patients ask their team about clinical trials?   

Dr. John Mascarenhas:

Well, are there clinical trials for what I have? Because again, they can be very particular to where you are in the disease process, what medications you are on, what your kidney function is, things that may really influence decision-making. So, are there clinical trials, what are the clinical trials evaluating, what should I expect from them, both potentially from a positive angle, but also from a negative. What are the known toxicities, what would be the time commitment? Trials are more involved, and they’re more involved for a reason. 

I actually personally think patients do better on clinical trials than standard of care. The reason why I think that is because they are more involved. There’s a lot more oversight and eyes on you. Not just a physician perspective, but maybe more importantly, from a research nurse and research coordinator perspective. There’s a lot of regulatory burden which translates, I think, to a lot of attention to safety and assessment for advocacy.  

So, I think understanding what that looks like at any given institution, and how it will affect the patient and their caregivers from a time perspective, and obviously toxicity. But also, what is this trial trying to achieve? Does it make sense for what I’m trying to achieve? 

Katherine Banwell:

I suppose another question might be where this trial is taking place? As a myelofibrosis patient and a caregiver, are we going to have to travel to get to this clinical trial? 

Dr. John Mascarenhas:

I think that’s a major obstacle for a lot of patients. We’re talking about a disease that typically affects people that are in there sixth, seventh, eighth decade of life. Patients don’t all live, as I’ve said, right around a cancer center or a tertiary care center, so travel, the logistics of it, the ability to have that support available. Sometimes it’s loved ones, and adult children having to take time off of work to be able to help in that process.  

It’s a lot, and I’m particularly sensitive to it, because I work in a metropolitan area, and I realize getting in and out is not easy. And a lot of times, these trials understand that, and they build into the trials stipends and support for transportation and/or lodging which helps. It’s not perfect, but it can help at least financially, and sometimes logistically, so I would definitely inquire about what those resources are.  

And sometimes foundations also help bridge the gaps for patients to help link them to trials and facilitate that. So, it’s a super important part of engaging in a trial. 

Katherine Banwell:

And who is on the health care team that might be able to answer questions like this? 

Dr. John Mascarenhas:

Well, for sure, the physician should be able to. But I think the most valuable resource often is the nurse and the nurse practitioner. There are usually research coordinators. These are often young people, but very bright young people, that are very invested in this that will sometimes show up at the clinic to talk to the patient or will be a phone resource that you could reach out to. So, it can really be, I think, three levels. The coordinator, the nurse or nurse practitioner, or physician assistant, and the physician. So, it really shouldn’t be one person, but a team of people that are available to you. 

AML Therapy | Emerging Treatments and Clinical Trials

 
What new AML treatments are emerging? Dr. Daniel Pollyea discusses recent advances in AML therapy, including the new menin inhibitors in development, and which patients they may be right for. Dr. Pollyea also emphasizes the crucial role of clinical trials as a treatment option for patients. 
 
Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 

 

Related Resources:

AML Gene Mutations | Emerging Targeted Therapies in Development

AML Gene Mutations | Emerging Targeted Therapies in Development

An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask You Doctor

Transcript: 

Katherine Banwell:

What about new and emerging treatments?  

Dr. Daniel Pollyea:

So much that’s really exciting here. So, we’ve had several new approvals. We have a new FLT3 inhibitor that we can use for newly diagnosed patients who have a FLT3 mutation and who are getting intensive chemotherapy.  

We have, even now, a new therapy that’s given as a maintenance treatment. It’s called oral azacitidine or Onureg, which is really exciting as well.  

But I think the next sort of big thing in the field is going to be a targeted therapy for another subset of patients who are defined by the presence of a gene mutation, NPM1, but also by a chromosomal abnormality, something we call KMT2A. But these patients have disease that’s potentially amenable to what we call a menin inhibitor.

And there are several companies with menin inhibitors. These therapies are getting pretty far along. We expect approval potentially soon for at least one of them. And then, I think these are going  to have a big impact on the field for those patients who have that type of disease. 

Katherine Banwell:

Oh, that’s exciting news. Where do clinical trials fit in? 

Dr. Daniel Pollyea:

So, clinical trials are crucial for everything that we’re trying to do. We don’t make any progress without clinical trials. So, that’s the field as a whole. We don’t move forward. We don’t get any of these new treatments without clinical trials.  

On an individual patient level, clinical trials are also really important because, for many patients we are still not doing as well as we want to be doing with this disease. We’ve made progress, but there’s still a lot of room for improvement. And so, for an individual patient, getting access to another therapy that, although we admit we don’t quite know yet whether it may be helpful but might be helpful, I think, is a really compelling situation to potentially consider participating because it is a guarantee you will help the field; and it’s a guarantee you will help every patient that comes after you through participation in clinical trial.  

But all these clinical trials are also designed to help you; to help you in a situation where we as a field don’t feel like we’re doing well enough. So, clinical trials, totally crucial if we’re going to continue making progress.  

And clinical trials are the reason why these last 10 years we have had such just dramatic improvement in availably of all these new therapies because literally thousands of patients have chosen to participate. 

Katherine Banwell:

How can patients find clinical trials that might be right for them? 

Dr. Daniel Pollyea:

So, back to The Leukemia & Lymphoma Society. They can be really helpful in guiding this. Asking your doctor, “Hey, are there any clinical trials her or at any other center that I should be considering?” And then, people who are interested in just going to the source. Every clinical trial that is available is registered at clinicaltrials.gov. And so, going to clinicaltrials.gov and then putting in some keywords like “acute myeloid leukemia,” you’ll see every clinical trial that’s available.