Lung Cancer Clinical Trials | Addressing Common Patient Concerns from Patient Empowerment Network on Vimeo.
Considering a lung cancer clinical trial can feel overwhelming and brings up a number of questions. Dr. Grace Dy reviews common concerns from patients, and explains how and when placebo may be used in trials.
Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.
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Transcript:
Katherine Banwell:
What are some common concerns you hear from patients when discussing lung cancer clinical trial options?
Dr. Grace Dy:
When I discuss clinical trials, the first question generally patients ask is: well, how effective is the drug, right? And the second question will be: well, what are the side effects? And those are very valid questions, but we may not always have an answer to it, especially if they’re in early phase. I do a lot of early phase clinical trials, meaning sometimes we don’t even know the proper dose of the drug to use, for example.
And the intent of the trial, for example, in Phase I, generally, is to find out what is a proper dose to use that is safe and effective before we can do a test in Phase II setting using the recommended dose to test it out more rigorously how well it works. And if it passes Phase II, then we go to Phase III, which then generally is comparing it with the standard to see whether it will be better or at least equivalent or non-inferior.
And you may ask, “Well, why even do a non-inferior?” Because, well, some drugs, it may not prolong your life more than current therapies, but if it has better side effect profile, right? So, there are actually drugs that are approved through non-inferiority trials. But those are the common concerns, and I think another common concern that I hear when I talk about trials, patients are concerned about receiving placebo.
Katherine Banwell:
And what do you tell patients?
Dr. Grace Dy:
Well, it depends on the design of the trial and the question that is being answered. So, in fact, for example, some situations in the standard of care is not to do anything. The best way to remove bias is to administer a placebo because the standard care would be not to do anything. And those, generally, are Phase III, you know. An early phase, Phase I, Phase II generally there are no placebo involved. I mean, there are some randomized Phase II trials that there are placebo involved and I explain to the patient why placebo may be involved and it’s usually on top of a standard of care. So, there could be a standard of care therapy but you add something else. So, you want to compare it with a new drug plus the standard of care. So, you might add placebo so that the doctors will not be bias when they measured their scans, for example. They say oh, this patient is getting this experimental drug. So, they’re excited. They might oh, you know, make it look better than what it actually is.
Katherine Banwell:
Now, as a researcher yourself, do you always know that a placebo is part of the clinical trial testing?
Dr. Grace Dy:
Yes, it will be in the design. So, it will say there is a placebo control. So, the title, or the design, generally will tell you this is a randomized, double-blind placebo control. Usually if there is a blinded there might be some placebo involved because then you don’t know what people are getting.
Advances in Non-Small Cell Lung Cancer Testing
/in INSIST! Lung Cancer, LC Insist Testing, LC Newly Diagnosed, LC Programs, LC Testing, LC Videos ND, LC Videos T, Lung Cancer /by Kara RayburnAdvances in Non-Small Cell Lung Cancer Testing from Patient Empowerment Network on Vimeo.
Lung cancer expert Dr. Grace Dy discusses the latest research in lung cancer testing, including liquid biopsies and minimal residual disease (MRD).
Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.
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Transcript:
Katherine Banwell:
As we know, researchers are still discovering new markers. Could you tell us about the latest news and research in biomarker testing for non-small cell lung cancer?
Dr. Grace Dy:
Oh, there is a lot going on. You know, sky’s the limit. But just an example: we have liquid biopsies that are in clinical use right now, typically in the stage IV setting.
But beyond that, we’re also having what we call minimal residual disease testing in what we call adjuvant situations. For example, patients who had surgery, there’s a big proportion of patients who still relapse.
So, finding out – and our scans are imperfect. They will not be able to detect micro metastatic clones or even a small cluster.
If you have a million cancer cells clustered somewhere, it will not show on the scan.
Katherine Banwell:
Each and every one of them.
Dr. Grace Dy:
Right. So, is there a better way? And so, that’s the question: can we detect it in the blood? So, these are assays that are being developed. Looking at different angles, not necessarily mutations, but maybe what we call epigenetic, meaning changes on top of the DNA that makes the DNA molecule be different in terms of whether some areas of the gene will be expressed or not.
And so, looking at these patterns because they’re different in cancers versus non-cancers. So, whether you can see it in the blood. So, it’s a ripe area.
There’s a lot of – so, there’s some overlap with early cancer detection and MRD, or minimal residual disease testing.
So, I think there’s an intense interest in developing these. But none are fully validated yet. There are trials that are going on, the studies that are ongoing to prove the utility and validity of these tests. So, we’re very excited. And obviously, AI everywhere. You have ChatGPT, right? So, you have AI being incorporated in diagnostics as well, in radiology, in pathology, to see: hey, maybe can we use AI technology to even maybe one day give us a mutation profile, right?
Katherine Banwell:
Yeah.
Dr. Grace Dy:
And that would be huge, right? But we’re not there yet.
The Role of Antibody Drug Conjugates in Lung Cancer Care
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What are antibody drug conjugates (ADCs)? Expert Dr. Grace Dy defines this new class of therapy and explains how ADCs work to treat lung cancer.
Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.
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Transcript:
Katherine Banwell:
What is the role of antibody drug conjugates in lung cancer care?
Dr. Grace Dy:
So, the antibody drug conjugates are an exciting new class of therapy. In fact, it’s been developed for decades, but we had the first antibody drug conjugate that was just approved less than a year ago in lung cancer. And that’s the drug called trastuzumab deruxtecan (Enhertu). It seems like we’re always steps behind our breast cancer colleagues.
You know, trastuzumab deruxtecan was first developed in breast cancer patients. But hey, we also find we can have some subset of patients who will derive benefit from that. But that’s just one example. There’s plenty of antibody drug conjugates that are being developed.
So, what are antibody drug conjugates? So, as the name implies, it’s an antibody that is attached to a drug that is actually typically chemotherapy, but you can use any other drug. Generally, it’s a chemotherapy. So, you can think of it as a targeted way of delivering chemotherapy because the antibody is very specific to a certain protein. And generally, what we try to do is look for proteins that are more expressed in cancers than in normal tissues. And you try to target that and improve the therapeutic index by using a more potent chemotherapy and potentially increase efficacy that way.
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Lung cancer driver mutations can have an impact on therapy choices for patients. Dr. Grace Dy discusses the various lung cancer driver mutations and how treatment options may target specific markers.
Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.
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Transcript:
Katherine Banwell:
How does testing impact treatment and care?
Dr. Grace Dy:
So, back in like maybe more than two decades ago, I was still in school. The treatment paradigm is sort of like a one size fits all. You come in with a lung cancer diagnosis. Everybody gets treated the same.
But with advancements in technology and understanding of actually what we call lung cancer is really genetically very different from one patient to another. We are actually not even still able to tease out all the particular details, but there are some improvements that have been made along the way. And so, defining, for example, mutations in cancers, there are what we call driver mutations that have a matched targeted therapy.
In certain patients, actually the target therapy works so much better than chemotherapy, for example. And that’s why we have it in guidelines based on the results of clinical trials showing that in the appropriate setting, if you have a mutation that we discovered through molecular testing, and then you use the matched target therapy, survival is so much better compared to, for example, chemotherapy.
Same with immunotherapy. If we use a biomarker to test out which patients may actually respond well to immunotherapy alone – so, that’s a major treatment paradigm change within the less than 10 years wherein we define there’s a group of patients where that’s all they need. Non-chemo, just immunotherapy, and they will do well.
Katherine Banwell:
What are some of the mutations that are being targeted?
Dr. Grace Dy:
Right. So, it seems like every year, it’s growing. So, it started off with the poster child in lung cancer story of EGFR. So, we have EGFR mutations. Even EGFR mutations, they’re a subtype of mutations for – there are certain drugs that work better for certain mutations.
So, we have the classical EGFR mutations, the atypical EGFR mutations. But EGFR mutations as a group are probably the most characterized given the longevity of the research that has been done. But there’s a lot more.
So, for example, ALK, KRAS, BRAF, HER2, NTFK, NRG, RET, MET. Even those mutations, they’re all these new ones. It’s between the subtype of mutations. For example, we talked about EGFR. Same thing with MET. You have MET exon 14 skip mutations. But in the absence of MET skip mutations, there are also what we call MET gene amplification, MET protein over-expression that have matching therapies that may actually work better.
But we’re still kind of scratching the surface. There’s a whole lot more being characterized and developed. Case in point, just a little over a year ago, there’s an LTK Fusion that was described. Very rare. But there’s a target therapy for it. So, unless you test it, you won’t find a matching targeted therapy.
An Expert Explains Predictive Biomarker Testing for Lung Cancer
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What is lung cancer biomarker testing? Dr. Grace Dy defines both biomarker and molecular testing and explains how these test results are used in lung cancer patient care.
Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.
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Transcript:
Dr. Grace Dy:
My name is Grace Dy. I’m a thoracic medical oncologist at Roswell Park Comprehensive Cancer Center here in Buffalo, New York.
Katherine Banwell:
Thank you for being with us today.
Dr. Grace Dy:
Thank you for having me.
Katherine Banwell:
What is biomarker testing, and is this the same as molecular testing for non-small cell lung cancer?
Dr. Grace Dy:
That’s a very good question. So, let’s first maybe define what biomarker means. So, biomarker is an all-encompassing term relating to a measurement of a biological parameter. That’s what it means.
So, you can actually have biomarker related to imaging. So, it’s not specific to a particular test. But what it’s trying to do is to guide doctors in making decisions. So, you can have, for example, a PET scan as a biomarker to indicate the effectiveness of therapy.
So, it’s not specific to a test. So, it’s a broader scope. But in cancer, generally, it’s used interchangeably with molecular testing. And molecular testing is a more focused test on the genetics of the cancer.
In some aspects, sometimes it also refers to testing for proteins, characteristics of different proteins in the cancer. Again, to help doctors generally define what might be a better treatment option that is personalized to the patient’s cancer.
In some instances, the biomarker can also be what we call prognostic, meaning independent of what we do with the treatment, it may define to us how well a patient will survive or have their outcomes, whether they have treatment or not.
So, those are maybe the nuances between a predictive versus a prognostic biomarker. But for all intents and purposes, the most common test that we use for lung cancer patients are what we call predictive biomarker testing. Molecular testing is one of the ones that we often commonly request to help us define treatment modalities, especially in non-small cell lung cancer.
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What safety measures are in place to protect people in lung cancer clinical trials? Dr. Grace Dy reviews protocols to help maintain clinical trial safety.
Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.
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Transcript:
Katherine Banwell:
What safety measures are in place to safeguard patients?
Dr. Grace Dy:
So, there’s a lot of safety measures involved. Not just within the protocol but there are also governing committees. IRB, Scientific Review committees, that look over – and these committees typically also, actually, involve some patient advocates that will be reviewing the protocols to make sure it’s not just a scientific aspect that is looked into but also patient perspectives that are looked into when we review these protocols.
So, from the medical perspective, protocols are generally written with guidelines to help treating doctors how to manage side effects. For example, because of the intense preparation – what we call pre-clinical, meaning the preparation done in animal models, in learning from other settings, for example; from other drugs, for example. If it’s not the first in class, you have a sense of what potential side-effects might be expected and so you prepare accordingly.
Lung Cancer Clinical Trials | Addressing Common Patient Concerns
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Considering a lung cancer clinical trial can feel overwhelming and brings up a number of questions. Dr. Grace Dy reviews common concerns from patients, and explains how and when placebo may be used in trials.
Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.
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Transcript:
Katherine Banwell:
What are some common concerns you hear from patients when discussing lung cancer clinical trial options?
Dr. Grace Dy:
When I discuss clinical trials, the first question generally patients ask is: well, how effective is the drug, right? And the second question will be: well, what are the side effects? And those are very valid questions, but we may not always have an answer to it, especially if they’re in early phase. I do a lot of early phase clinical trials, meaning sometimes we don’t even know the proper dose of the drug to use, for example.
And the intent of the trial, for example, in Phase I, generally, is to find out what is a proper dose to use that is safe and effective before we can do a test in Phase II setting using the recommended dose to test it out more rigorously how well it works. And if it passes Phase II, then we go to Phase III, which then generally is comparing it with the standard to see whether it will be better or at least equivalent or non-inferior.
And you may ask, “Well, why even do a non-inferior?” Because, well, some drugs, it may not prolong your life more than current therapies, but if it has better side effect profile, right? So, there are actually drugs that are approved through non-inferiority trials. But those are the common concerns, and I think another common concern that I hear when I talk about trials, patients are concerned about receiving placebo.
Katherine Banwell:
And what do you tell patients?
Dr. Grace Dy:
Well, it depends on the design of the trial and the question that is being answered. So, in fact, for example, some situations in the standard of care is not to do anything. The best way to remove bias is to administer a placebo because the standard care would be not to do anything. And those, generally, are Phase III, you know. An early phase, Phase I, Phase II generally there are no placebo involved. I mean, there are some randomized Phase II trials that there are placebo involved and I explain to the patient why placebo may be involved and it’s usually on top of a standard of care. So, there could be a standard of care therapy but you add something else. So, you want to compare it with a new drug plus the standard of care. So, you might add placebo so that the doctors will not be bias when they measured their scans, for example. They say oh, this patient is getting this experimental drug. So, they’re excited. They might oh, you know, make it look better than what it actually is.
Katherine Banwell:
Now, as a researcher yourself, do you always know that a placebo is part of the clinical trial testing?
Dr. Grace Dy:
Yes, it will be in the design. So, it will say there is a placebo control. So, the title, or the design, generally will tell you this is a randomized, double-blind placebo control. Usually if there is a blinded there might be some placebo involved because then you don’t know what people are getting.
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Is there a point in a patient’s breast cancer care when a clinical trial should be considered? Breast cancer expert Dr. Bhuvaneswari Ramaswamy shares her perspective.
Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.
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Transcript:
Katherine:
Well, what questions should patients ask their team before they even begin a clinical trial?
Dr. Ramaswamy:
I think most important thing, and in – and usually, a doctor would – should really explain this to you, particularly if it’s a little bit of a complex study with a paper and pen. They need to tell you if this is two arms, that you may be randomized into this arm versus this arm. So, what you need to understand is what are the drugs and what are the differences between these two arms? Whether you go into this arm or this arm, are you going to be compromised with your outcomes? And that is important to understand. And now certain arms may have a little bit more blood draws or scans. And so it’s important to understand what it means, what commitment of your time and other things that goes on with different treatments.
So, again, these are important for you to understand. Also, it’s important for you to know what is that experimental drug? What is that new drug? Right? And what data do they have from the past about this drug? Has it been tried in humans before or is this the first in the human study? And what does a target, why is it used in my cancer? How do you think it’s going to work? And what are the side effects that comes with this experimental drug? Mm-hmm. I think for you, the most important thing is to understand what is your commitment because the commitment during clinical trials can increase a little bit. You may have to come in, stay a bit longer to kind of check the drug levels in your body, in your blood, or do more testings, blood draws, and things like that.
Are you willing to do that? That’s something for you to answer. Don’t feel that you need to do this for some reason other than it fits your life and it fits your philosophy, okay? But also don’t push it away thinking that just because you don’t know enough and you’ve heard things from outside, it’s important for you to hear it from your providers and understand it clearly and then make a decision that’s right for you.
When Should Breast Cancer Patients Consider a Clinical Trial?
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Is there a point in a patient’s breast cancer care when a clinical trial should be considered? Breast cancer expert Dr. Bhuvaneswari Ramaswamy shares her perspective.
Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.
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Katherine:
Let’s talk about where clinical trials fit into a breast cancer treatment plan. When should someone with breast cancer consider a trial?
Dr. Ramaswamy:
And the most important thing again here to understand is clinic – you should consider a clinical trial at all aspects, all parts of your journey through this whole diagnosis and whatever the outcomes that you are going to have. We all have a lot of misconstrued ideas about clinical trials. And one of the thing is we think clinical trials are only when standard of care is not needed like that is that – we don’t have other treatments. That you are coming to a point that you don’t have other treatments and now you should go to clinical trials. That is not true, right? Because the fact that you can have these treatments in your curative setting came because many of the patients before you were willing to go on the trial that compared standard of care, which may not have had that new drug with a competitor to the new drug with the standard of care.
So, nobody gives – the important thing to understand is no one is going to give you a placebo alone for cancer treatment. Think about that. I mean, there’s no way a doctor whose oath is to cure you to help you is going to just give you placebo. So, it is important for you throughout your process to actually ask. In fact, we used to wear a badge to say ask your doctor about clinical trials. So, ask your doctor about it, even if they miss it. Just ask, is there a clinical trial that I could fit in? They’re supposed to look for it, but you don’t need to leave it at that.
Ask at all aspects of your journey for a clinical trial option. If you are not suited for the trial, no provider is going to put you on that trial because everybody has the same goal that you need to get better. Your chances of getting better is high.
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Are we closer to personalizing breast cancer treatment? Dr. Bhuvaneswari Ramaswamy defines precision oncology and explains the progress being made to make it a reality.
Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.
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Transcript:
Katherine:
We often hear the term precision oncology. What exactly does that mean?
Dr. Ramaswamy:
So, precision oncology is again, one of the ways that we are getting better, right? So, what we are trying to understand is that originally, we just understood cancer as just where all it is and how spread it is. Again, an anatomical. Now we are getting more and more into the biology. So, in the biology we were focusing more on the RNA. There are two things, the RNA and DNA. DNA is your code, and RNA is the one that comes from the DNA kind of the message that goes, makes the protein, which changes everything in your body. So, we were focusing on the RNA, which are the biomarkers, right? Because we – you that that’s what drives the cancer. Now we are focusing more on the DNA. What is changing within the core, that blueprint in the tumors that is causing resistance that is making cancer cells worse?
Could we target those? And so that is what is precision oncology. They’re trying to understand the genetic core change within your tumor and maybe able to target that. You could have breast cancer, you could have a completely different cancer like lung cancer. But if you have the same genomic change or gene change within the tumor, could we just target that cells and be able to get a really good response? And those are the kind of ways we are going towards. And I can tell you it is as you hear this concept, it sounds like so bizarre. I’ll tell you, I felt the same too when it all started, even as a scientist and an oncologist. But it is truly becoming a reality. And in certainly in more some cancers more than the others, but it’s slowly becoming a reality for all cancers. So definitely, again, a positive and a tailored therapy to the patient. And so that’s what we want.
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What role do biomarker test results play in a breast cancer patient’s prognosis? Dr. Bhuvaneswari Ramaswamy reviews important biomarkers, such as hormone receptor status, and how they affect care.
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Transcript:
Katherine:
How do biomarker test results impact prognosis?
Dr. Ramaswamy:
All of them do because it’s important to understand that that’s why this – these biomarkers carry a lot of weight. Biomarkers are good, are important, but when the most important biomarkers are that are going to impact outcomes. And then even more important is whether they’re going to predict the efficacy of a treatment, the outcomes used by the success of a treatment, right?
So, in that way, if your tumor is estrogen and progesterone receptor- positive, then you generally tend to do a little bit better. And they are slightly better tumors for sure, and you know that the anti-estrogens would work. So, these – there’s two ways. They are prognostic and predictive. Now, the whole two positive tumors previously used to have a worse prognosis, but we have such wonderful anti HER2 therapies now that we can use. Now we know that if you use those therapies, the outcomes are better.
So, it’s predictive again, that predictive of the treatment and prognostic. Now the triple negatives are usually a little bit more difficult to treat because as you can understand, they don’t have any of these targets for us to use targeted therapy at this point. There is definitely some improved outcomes using immunotherapy, but you know that we don’t have those proteins. So, slightly worse outcomes for sure, triple negative among all of these subtypes. And also there is no biomarkers.
We do use immunotherapy, which is helping certain percentage of those patients, but we still need to understand why it’s not helping other people. So, yeah.
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Transcript:
Katherine:
Patients are often confused about the difference between hereditary genetic testing and biomarker testing. Would you explain the difference?
Dr. Ramaswamy:
Absolutely. So, the hereditary genetic testing is what are the genes that you got from your parents? It could be mother or father. And we all think that because it’s breast cancer should be just from mother. It doesn’t matter. It can be from mom or dad. And that influences your breast cancer risk. So, if you have some mutations or some changes in certain genes that can increase your risk of breast cancer. And the well-known ones are the BRCA1, BRCA2, but we also now know a few more like the PALB, ATM and CHEK2 and other things.
So, now when you do have a family history, or sometimes even based on your age and your oral history, we do test for this hereditary risk factors that you might have and that may influence your surgery and some type of treatments that we give as well.
Now as far as biomarkers, biomarkers are more proteins that we check in your tumors. The breast cancer that you already have, and that we may do the biopsies. We look for these tumor proteins that influences the growth of your cancer cells. So, we can target these biomarkers and decrease the growth of your cancer cells.
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Transcript:
Katherine Banwell:
Being a care partner can be emotionally and physically draining, so what are some common emotional issues that they face?
Marc Paloma:
I would say from my experience, a lot of care partners as they’re going along through the process, it’s if people have questions about their competency as the care partner. Am I not doing enough to support the patient? Am I doing something wrong? Is there something I can be doing better? Or am I maybe hovering too much?
Katherine Banwell:
Yeah.
Marc Paloma:
Am I overcaring or something in some way? And so those are some things. I also tell the care partners that it’s okay to acknowledge that they have needs as the caregiver.
And they can even say things out loud to their support people of what I’m doing can be a very tough job, and there are challenges to it. And at the same time, then also trying to not feel guilty about having those feelings of saying maybe sometimes I’m having a rough time. So, yeah, it can be, right, very, especially emotionially, emotionally taxing I think for the care partners. So, I think also just one other thing I would add.
One other I think emotionally very difficult part I think which is something that often I think goes unsaid, although I’m hoping it doesn’t go unsaid with the care partners that I work with, is that care partners and patients everybody has that nagging question, that dreaded feeling of what happens if this CAR T process does not work? What if my loved one passes away? So, it all for all of those – all those reasons, am I doing it right? Am I doing it wrong? Am I doing too much?
What if this doesn’t – all of those things just make it a very emotionally taxing process for the patient and also for the care partner as well.
How Can a Social Worker Help CAR T-Cell Therapy Care Partners?
/in Care Partner Programs, Care Partner Resources, Care Partner TK, Care Partner TK Communicating /by Kara RayburnHow Can a Social Worker Help CAR T-Cell Therapy Care Partners? from Patient Empowerment Network on Vimeo.
What support can CAR T-cell therapy care partners expect from social workers? Licensed clinical social worker Marc Paloma shares how social workers support care partners and patients before, during, and after the CAR-T process. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.
See More from The Care Partner Toolkit: CAR T-Cell Therapy
Related Resources:
Expert Advice for CAR T-Cell Therapy Care Partners
What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?
CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?
Transcript:
Katherine Banwell:
What is your role in helping CAR T-cell therapy care partners?
Marc Paloma:
So, here at the University of Chicago Medical Center, every patient who’s identified as going through the CAR T process, I meet with them and their care partner right when they’re identified as candidates for CAR T. There’s a full social work psychosocial assessment that gets completed. It’s an 80-question questionnaire that involves the patient and the care partner both just asking all kinds of questions about the support that they have, how they’re coping. Just lots of very practical kinds of questions about have you completed your power of attorney, and do you understand the process of the CAR T? So, I find that I’m picking up on providing support to the care partners when I’m doing that initial assessment.
And then throughout the process after the patient goes through the CAR T process hospitalization and when they’re coming back for their follow-up visits. So, I can do lots of sort of follow-up check-ins with the care partners, see how they’re doing, how they’re coping, how things are going. I also try to make sure that I foster an open dialogue with the patient and the care partner. Again, since so that it’s at least being said out loud that the care partner is also going through their care – their parallel process of being the care partner and what it’s like for them and that it can be stressful.
That often leads to a little bit of a conversation sometimes of balancing between the patient’s feeling sometimes of “I’m being a burden to my care partner, I feel guilty about doing that.” And then the care partner’s feelings of, “No, you’re not being a burden. Of course, I’m going to do this for you because I’m your,” spouse or your partner or your sister or whatever.
And so I try to foster that open dialogue between the care partner and the patient so that they both sort of know this is what we’re feeling and it’s not just being kept inside. That it’s actually being spoken out aloud. I just and I think that is just helpful because that’s just sort of lets the partnership – the partners know kind of what’s going on. You’re actually talking out loud. And I feel that as the social worker, I’m able to facilitate that communication, so.
CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team?
/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Communicating /by Kara RayburnCAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team? from Patient Empowerment Network on Vimeo.
What questions should CAR T-cell therapy care partners ask the healthcare team? Social worker Marc Paloma shares key questions to ask to prepare themselves for the CAR-T process for their loved one, explains the role they play as a care partner, and discusses team members who can support them. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.
See More from The Care Partner Toolkit: CAR T-Cell Therapy
Related Resources:
What Resources Are Available for CAR T-Cell Therapy Care Partners?
How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?
Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help
Transcript:
Katherine Banwell:
When meeting with the healthcare team, what are key questions that CAR T-cell therapy care partners should ask?
Marc Paloma:
Sure. So, I think probably the most important thing for the care partner is making sure that they know who their key resource health providers are in the process. And, of course, not to discredit myself in any way, of course, because I think the social worker is obviously a very important partner in the whole process of CAR T. But here at the University of Chicago, we have CAR T nurse coordinators. They are the ones who kind of like sometimes translate things down into kind of plain English for patients.
They talk to the patients and the care partners about when your CAR T collection is going to happen, here are the next steps. Here’s maybe some testing that you have to have done prior. So, I always tell the care partners, that is – so that’s the person that you go to for sure. You go to your nurse, your CAR T nurse coordinator to answer your initial questions. And then they can bring other healthcare providers in to answer more specific questions.
So, one, knowing who your key resource health providers are. I think it’s also important for them – like a key question is to ask kind of in the vein of what are my expected responsibilities? What exactly am I going to be asked to do as the care partner? For us here at the University of Chicago, we do have a very set list of specific rules and responsibilities that we give to care partners that’s written down, and we provide that to them.
And it’s all the basics that you would think about making sure the patient has hydration, they’re taking their medicine, they’re getting their rides to their follow-up visits, somebody’s with them if there’s anything that they need. Somebody’s taking care of all the concrete things at home like cooking, cleaning, laundry, outside grocery shopping, things like that. So, those questions and then I think another thing is what – just so in the same vein of just so that the care partners know what to expect, I always tell healthcare partners ask questions like, what is it going to be like for the patient during the CAR T process?
What’s their condition going to be like? And then what is their condition going to be like when they leave the hospital, and I’m providing the hands-on care for them at home? Just so that they have an idea of what to expect. And I find that that’s important because there are some care providers who really think that when patients go home that they’re going to be bedbound and need 24/7 care, and we have to sometimes do some re-educating that that is most of the time not the case for patients.
Yes, you will have the responsibility of providing care, but it won’t be like you have to be awake 24/7 for weeks and weeks. So, those are important things I think for care partners to ask.
Expert Advice for CAR T-Cell Therapy Care Partners
/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Understanding /by Kara RayburnExpert Advice for CAR T-Cell Therapy Care Partners from Patient Empowerment Network on Vimeo.
How can care partners prepare to care for someone undergoing CAR T-cell therapy? Social worker Marc Paloma shares advice to prepare oneself for the process and encourages care partners to manage expectations with friends and family. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.
See More from The Care Partner Toolkit: CAR T-Cell Therapy
Related Resources:
What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?
How Can a Social Worker Help CAR T-Cell Therapy Care Partners?
CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?
Transcript:
Katherine Banwell:
Marc, what are three key pieces of advice you have for care partners who are preparing to care for someone going through CAR T-cell therapy?
Marc Paloma:
So, I sometimes use the analogy with them that for patients as well, but also for the care partners going through CAR T is almost like preparing or going through a marathon or doing marathon training. So, for the CAR T partners, I always – to the CAR T care partners, I always say as much as you can be in the best physical and mental shape as you can be going into the process because there obviously will be a lot asked of you as the care partner. I also remind the care partners remember that you are not a perfect person and there are going to be times where you maybe will make mistakes or maybe not do the best that you think you could have been or you could have done. And just to forgive yourself if needed.
And also the last thing is to acknowledge even out loud to family members to the patient that while you’re being the care partner for that you are also going through a process as well, a parallel process to something that the patient is going through. And that’s something that can create its own anxieties and insecurities for the care partner. So…
Katherine Banwell:
Yeah.
Marc Paloma:
…those are the three important things I would say.
And lastly, be patient with the process as the patient goes through the recovery and the healing process. There are many days where if you’re going forward, things are going well and it can feel like three steps forward and then maybe one step backwards.
So, just be as patient as you can with that healing process and as the care provider, you and the patient will get through it. It just sometimes takes time to go through that process.