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HCP Roundtable: Strengthening the Patient-Provider Partnership in Myeloma Care

 Multiple myeloma experts Dr. Sikander Ailawadhi and Dr. Craig Cole explore how to strengthen the provider-patient partnership through actionable communication tools, workflows, and team-based approaches. Drawing from deep clinical experience, they highlight best practices for supporting informed, collaborative decisions, especially around innovative therapies like CAR-T and bispecifics.

See More from EPEP Myeloma

Related Resources:

How Can Myeloma HCPs Initiate Clinical Trial Conversations?

How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

Do Myeloma Treatment Advancements Create Care Challenges?

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients, EPEP program. I’m Dr. Nicole Rochester. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and overcoming practice barriers. In this myeloma healthcare roundtable, we are tackling the patient-provider partnership in multiple myeloma treatment decision-making.

Some of the topics we’ll explore today include: aligning treatment goals and quality of life preferences among myeloma patients, care partners, and their providers, sharing healthcare provider-to-provider best practices and real world strategies to reduce treatment burden and optimize outcomes, recognizing and addressing differences in treatment priorities between patients, care partners, and clinicians and applying these insights to clinical practice.

It is a privilege to be joined by Dr. Sikander Ailawadhi, Professor of Medicine in the Division of Hematology Oncology at the Mayo Clinic, Florida. Dr. Ailawadhi’s career focus includes the treatment of plasma cell disorders, multiple myeloma, Waldenstrom’s macroglobulinemia, and chronic lymphocytic leukemia. His research focuses on understanding the epidemiology and pathophysiology of these disorders, evaluating the benefit of various therapeutic strategies in different populations. Thank you for joining us today, Dr. Ailawadhi.

Dr. Sikander Ailawadhi:

Thanks for having me.

Dr. Nicole Rochester:

We’re also joined by Dr. Craig Cole, a board-certified hematologist. We are also joined by Dr. Craig Cole, a board-certified hematologist. Dr. Cole leads multiple clinical trials in multiple myeloma and has worked extensively with patient advocacy groups to empower, educate, and bring equitable care to everyone. Thank you so much for joining us today, Dr. Cole.

Dr. Craig Cole:

Thank you for having me. Thank you.

Dr. Nicole Rochester:

We have a lot to discuss as it relates to the patient-provider partnership and myeloma treatment decision-making. So let’s start with aligning treatment goals and quality of life preferences among myeloma patients, care partners, and providers. So I’m going to ask this question of each of you, but I’ll start with you, Dr. Ailawadhi. In the context of an increasingly complex myeloma treatment landscape, how do you approach shared decision-making with your patients?

Dr. Sikander Ailawadhi:

Dr. Rochester, you’re asking such an important question and thanks a lot for starting there. As you rightly point out, the treatment landscape of myeloma is becoming increasingly complex. In fact, if you ask 10, quote unquote, experts on myeloma of how the treatment would be, you’ll probably get 11 to 12 responses around them. So you can imagine that when patients who have just been given this devastating diagnosis along with their caregivers are trying to negotiate that path of decision-making, it can be quite complicated. So the way I approach it in my clinic is, I think before getting to the treatment part, to try to build a bond and a relationship with the patient and their caregivers, make sure that they understand about the disease and the diagnosis very well. 

They need to understand those ins and outs first. What are the markers in myeloma? What is the risk stratification? What is the disease stage? What are the symptoms they are dealing with? Just to make sure that we talk to them on a person-to-person level, trying to bring it down to their level of understanding. And then when we are starting to talk about the treatment options, the way I approach it is I try to lay it down by categories and kind of buckets of treatments with some broad treatment guidelines. Two versus three drugs, three versus four drugs, what are the different categories we are going to choose from and why we are selecting certain options, what is the data to support them?

Once we have come up with some decisions, once we have come up with some plans, I’ll also make sure that they are very aware of the side effects to expect and what to expect with treatment, what to expect in the next one month, in the next six months, over the next five years, et cetera. But then I’ll try my best to write that down in as much detail and simple language as possible in their notes. And I highly encourage patients to record the meeting or have a loved one, a caregiver on the phone if they were not present in person. And if they try making the notes, I’ll tell them, let me make the notes, let me write down on paper, and I’ll share this with you. And then you read my note, but I want your full attention as we are talking.

Then typically after the patient has left and gone home, once we have decided on a treatment, there will be an education visit, during which the nurse will contact the patient, again answer questions, and hopefully within these two or three touch points, we’ve been able to answer questions. It is very difficult, I completely understand, and we don’t have enough time. But that’s also the challenge and that’s also the opportunity for us. And I don’t know what…maybe Dr. Cole can also help guide this even further.

Dr. Nicole Rochester:

Yeah, thank you, Dr. Ailawadhi. Those are great practices. And Dr. Cole, we’d love to hear from you about how you approach shared decision-making. And maybe if you have an example where the patient’s input meaningfully shifted your initial treatment plan.

Dr. Craig Cole:

Yeah, just like Sikander had mentioned, myeloma is complex. For patients, it takes a lot of medical literacy to be able to navigate this disease. If you have melanoma you can go, I always worry about the…I always imagine, what’s my patient going to say when she goes to church? She has melanoma, she can just show them here’s my melanoma. If you have myeloma, then you have to be able to tell another person that you have a cancer of the immune system of a certain cell called a plasma cell that’s inside the bone marrow that I’m checking blood counts.

And it takes a lot in order to get through that. And shared decision-making for myeloma isn’t something that one day that I just walk into a room and say, we’re going to do share decision-making today. It’s a complete journey. And that journey starts with the first visit. So I do exactly what Dr. Ailawadhi said that I actually have the patient information about myeloma. We start with what the disease is. And I actually write down a lot of the information.

Instead of giving them a brochure and saying here you go, read this when you go home. I go over that brochure with the patient. And so we sit, I have my pens, they have their pens. I make sure that when it’s a new visit, when it’s the first couple of visits, that our scheduling people are sure to say, bring your family with you, don’t come alone. Bring somebody with you that can help with all the things that we’re going to talk about during their visit. And sort of too, so I go over every all the details. And I tell them my mom was an elementary school principal.

And I know that it takes three passes, three exposures in order for you to really learn something. So I tell the patients, there’s no pressure. There’s no test at the end, that we’re going to go over this again and again. And the goal set is that eventually you’ll understand this disease as well as I do. And that we’ll be able to talk colleague to colleague, that we’re not going to have this imbalance between the patient and the doctor, but we work together.

And the way to do that is really education. And that education doesn’t take place on one visit. It takes place on every visit, every time. So I had a patient just recently, and she’s 90 years old with myeloma. I put her on Dr. Ailawadhi’s clinical trial. So there you go. And how we got to that is that she came in with…she came from a nursing home. We talked to the nursing home and said a daughter has to come with her, really has to not just…they’re going to send the person with the nursing home. Daughter has to come with her. We sat down and had went through myeloma 101, kind of wrote down everything for her. And I asked her one thing is tell me something about yourself that’s outside of myeloma. Tell me something that hasn’t anything to do with this disease. So I found out she was a nurse, and she was a cardiovascular nurse for years. And so now we talk about that, her history. And I asked her when, on her second visit, about goal setting, and she said that we talked about options.

She said she wanted to not have pain, and she wanted to have more energy. And I said, well, here are the therapies that can get you there. And she was really interested in the clinical trial. She said, “I want to help other people behind me that will have this disease in the future.” That was very motivating for her. When I asked her about the goals of care, that was a very strong motivator for her. And so she decided to go on the clinical trial. I would have offered it anyway, but her motivation was definitely to go on the clinical trial. There have been a few bumps in the road, but she’s very happy with her care right now.

Dr. Nicole Rochester:

That is incredible. I love that both of you really talked about the humanity aspect of your encounters with your patients and the importance that they understand and getting to know them beyond their disease and making sure that they have the proper support during these visits. I really appreciate that. Well, we know that patients come to the table with lots of experiences and expectations, and all of those things can influence their preferences. So, Dr. Ailawadhi, how do you navigate situations where the patient’s goals may not align with the evidence-based recommendations for their disease?

Dr. Sikander Ailawadhi:

An excellent question. I’m so glad that we are having these discussions because we think about these things and we encounter these things, but we don’t end up talking about these situations all the time. So it can be a little challenging because I’ll be very frank. All of us have preferences of what we think is in a way…might be beneficial for the patient. And frankly, doctors, medical professionals, may have this kind of paternalistic view towards medicine. That happens very often.

Similarly, sometimes patients have that similar view that they just want their doctors to take the decision. But at the same time, in this kind of focus on shared decision-making, it is extremely important to understand where the patient is coming from, what are their beliefs, and why are those beliefs there. And frankly, if at some point, see, it’s important to remember our job is to guide the patient, do the best for the patient within our knowledge, our experience, et cetera. But what I say all the time to the patients is, well, we’re presenting these options to you. You’re more than welcome to pick what you want. Let’s discuss. If I don’t feel that may be the best option for you, I’ll put across my case.

But that said, if you take a decision which complies with your beliefs, your knowledge, your understanding, and you’ve decided to go there, we will still fully support you. We will try our best to walk you through that decision in the most appropriate manner. And I’ll give you an example. One of the very important treatments for myeloma today is CAR T-cell therapy. And I’ve recently had, maybe in the past month or so, had a patient who lives maybe an hour, hour-and-a-half away from us, but has good family support, and unfortunately has had disease that is progressing through treatment options relatively rapidly.

So we had a discussion, virtual visit, and I laid out some treatment options, but I strongly suggested CAR T-cell therapy because there’s a possibility that person may get a meaningful response with treatment. And the patient’s first response was, “Nope, not going to do that.” I said, “All right, let’s try to talk about it.” “Nope, not going to do that.” It took maybe a visit or two to get to the point that they were beginning to open up. And they opened up that the side effect profile was just extremely scary for them.

They had read about it. It was extremely scary. It took a third visit, till the third visit for me to try to convey to them enough that, well, all you’re reading is not necessarily all that will happen. Things may happen, but this is the range within which we expect. And our treatment, our management of side effects is much better now, et cetera, et cetera. So I made my case quite vehemently, quite enthusiastically. But despite that, the patient actually sent a message to the nurse because they were not very comfortable saying it again to my face that they really didn’t want to do that. So they sent a message to the nurse that, “Hey, we’re not going to do CAR T.” And they canceled an appointment. So I actually then called the patient and I said, “Well, if you don’t mind, may I speak with you for a few minutes?” They said, “Yeah, sure.” I said, “First of all, if by any reason you’re canceling the appointment was because you thought that you were not going according to my recommendation and that would hurt  me or hurt my ego or make me angry, please, that’s not the case. You don’t want to do CAR T.”

“We will not bring up CAR T, at least in the near foreseeable future. I’m not guaranteeing I won’t bring it up, but I may bring it up in the future, but we can still take care of you. We can do a lot for you. Please, if you’re okay about keeping the appointment and discussing alternative options, let’s discuss alternatives to CAR T. We have many, many things we can do for you.” That made a difference in which the patient then set up the follow-up appointment with his spouse because he wanted her to be there. And we discussed options, and now they’re going to start some other treatment.

In fact, I made a plan that they are going to be getting with their local doctor, so they don’t have to come an hour-and-a-half back and forth. But frankly, bottom line is that the patient’s choices, preferences, beliefs, goals, as Dr. Cole also mentioned, are paramount. And it’s important to be able to convey this to the patient. Our job is to guide. Our job is not to dictate. Sometimes we will come across these situations that the patients are taking a decision which may not be the best based on evidence. But if we really try to think about why the patient is taking that decision, I think that may be the best decision for that individual.

Dr. Nicole Rochester:

That’s such a great example, Dr. Ailawadhi. Thank you for sharing that and even for being vulnerable and sharing with us how things kind of didn’t quite go as well and then you were able to get the patient back on track. Well, speaking of CAR-T therapy, Dr. Cole, I’m going to address this question with you. Do you have any similar stories or have you identified communication strategies that have been effective in improving patient comprehension and engagement around some of these newer treatments like CAR T?

Dr. Craig Cole:

Yeah, you know that myeloma isn’t curable yet, right? So everyone at some point is going to have a relapse. And so right when I say to a patient, you’ll know this stuff as well as I do, once they kind of got settled into their induction therapy, once they got settled in, the one thing that we do is that we talk to the patients about the new therapies. Because after they kind of get settled in, now they’re kind of curious about what else is out there. So even when a patient is on maintenance therapy, there are people on maintenance therapy for years, and their visits can be pretty straightforward. And I use the opportunity during those sort of quiet time visits to talk about new therapies. Now my patients come out, walk in the door, and they say, what’s new in myeloma? And I mentioned the CAR T, and I mentioned under very, very easygoing circumstances I could, I could walk in and say, how do you do? How’s your maintenance?

I could walk out. But I sit down and I talk about these new therapies. So I talk about these are the new bispecifics, or really, you don’t need it now, but this is how they work, there are side effects. Then they come another visit, a couple months later, we talk about bispecifics, talk about how they work, encourage them to go to some of the meetings. I know the patient support meetings, they talk about this, they hear it from other patients. And I kind of lay the groundwork because I can’t go home and talk about the new myeloma therapies with my wife, because she’s heard it for 20 years. She doesn’t want to hear any more about myeloma, bless her heart. And so I talk about it with my patients. So then when the day comes that they actually have relapse and we’re talking about bispecifics, clinical trials, or CAR T, it’s nothing that’s foreign. They’ve heard this over the course of years. And so patient empowerment isn’t, like I mentioned earlier, patient empowerment isn’t you walk in one day and say, hey, it’s time to be empowered.

It’s a journey. It is a practice style that you, just like you practice piano and practice guitar, you practice patient empowerment every visit every day. And you, and I do, I think about that when I go and see a patient, have I engaged this patient so that they understand? Because if they don’t understand what I’m talking about, it’s not on them. That responsibility is solely on my shoulders. So if they say, I don’t understand what an M protein is, then I have failed at doing my job. I need to up my game a bit to make sure they understand that. And so it is really, it’s a journey over time to empower patients and to know about their options, even when we’re not engaging them on that visit.

Dr. Nicole Rochester:

Well, each of you have described just some really amazing ways that you interact with your patients and the personalized care and the conversations and the writing of the notes. And the thing that I’m struck by is that we all know there is very limited time that most physicians have to spend with their patients. So I’m curious, how are you doing this with the limited time? Are there certain strategies that you’ve implemented from a system level? Are there things that you would like to see adopted? And I’ll have you share one, Dr. Ailawadhi, and then I’ll go to you, Dr. Cole.

Dr. Sikander Ailawadhi:

So, you’re so right. In this time-constrained world where we have double-, triple-booked meetings on top of clinic and then grand rounds or tumor boards and this and that, it becomes very difficult. So, I think the first thing is that as an individual or even I would say for my institution, the guidance that we follow is, when I’m in front of a patient, I have to leave everything else at the door when I enter that room. So, in that particular visit, nothing else matters. It is only that patient and everything related to them.

That said, I shared an example earlier where to get to one treatment decision, it took almost four visits. And that’s the reality of the world. So, at least in our system, how we have it set up is that this barrage of messages and in-basket and information, et cetera, that comes, it is screened at a few tiers. So, messages that are related to medications, et cetera, there are clinical assistants who are constantly dealing with that and taking care of that. Clinical questions are typically being handled by our nurse or the pod nurses for the pod.

There are two of them who handle all the questions that come and are clinical and can be handled. At the next tier is that if they have any need for a clinical decision, they will first go to the APPs in the team, the advanced practice providers, which actually I should say one of the things we have implemented is the whole team sits together. So, there is about a five-step radius between me, my nurse, the nurse practitioner, the physician assistant, the scheduler, the research coordinator, everybody sits together for the clinic.

So, that helps that communication. And if they are not able to get the answer with the APP or if it’s a very specific question which I must answer, it’s a treatment-related guidance or a change in management or an urgent message, then I will be involved in that. So, I think we have this tiered work or a process which tends to work good. There are some tools that are being implemented. I personally don’t use that, but there are AI tools for documentation, for example. When we are with the patient, the notes are almost finalized before even we leave the room. So, those AI tools really help with taking away some of that documentation burden. So, I’ll stop with these two examples, but over to you, Craig.

Dr. Craig Cole:

I need one of those. So, one thing, I loved everything that you said, and we kind of do some of the same things that it’s kind of tiered, that I’m not, when a patient is ruined, I’m not the first person that they’ve seen that day. And some of the questions have already been…they may have or concerns or problems have already been screened by one of our, by like our pod nurses too. So, when I walk in, if they’re having a problem with their central line, that’s being taken care of in the background while I’m with the patient. And so, I think for some of the complex patients that we…some of the patients on maintenance there, but I don’t ask the nurse to really go in and see them. But some of the more complex patients, the pod nurse will go in and kind of screen through to make sure that everything’s okay so I can be prepared, which then streamlines things. The other thing is I make sure that I tell patients to write down your questions.

Come in and write and have your questions set because it will streamline, instead of patients kind of hemming and hawing and saying, gosh, what was I going to ask you? I think the biggest thing which has really helped is I congratulate patients when they bring in their notes. I say, those are fantastic questions. I’m so glad that you wrote them down, which then encourages them to do it again.

And then it really, I have one patient, bless her heart, and she always has, I think she works really hard at making 20 questions because some of the questions like 17, 18, 19 are just, they’re definitely filler questions, but her magic number is 20. So we just hit, hit, hit, hit, hit, hit, hit. And usually, and I say, make sure you incorporate questions about how you’re feeling and what you’re doing now and how you’re doing now and as part of our visit. And it streamlines things quite a bit. And sometimes I ask to make a copy of their questions. So when I make my note, I have at least a template of some of the stuff that we talked about.

But having an organized visit as much as you can with a patient, of course, are going to be things that kind of get you by surprise. The other thing is just like Sikander said, I am a time, very, very time, timed person. And I’m always thinking, gosh I’m running late, but I’m with the patient. I encourage my patients. And I do, when I do talks for patients, I say, slow down your doctor. If your doctor’s running too fast, slow them down. I even tell my patients that if I’m going too fast, slow me down. So all my patients know that I run a little late, sometimes a lot late, but they know the reason I’m running late is I had to spend time with somebody. And they’re very understanding for my tardiness.

Dr. Nicole Rochester:

That is wonderful. Thank you to both of you for such a rich conversation about engaging patients and their partners. So now we’re going to shift to talk to our healthcare provider audience about best practices and real world strategies to reduce treatment burden and optimize outcomes. And I’m going to start with you, Dr. Ailawadhi. As the therapeutic arsenal for myeloma continues to grow, how are you and your team proactively addressing treatment burden, whether related to toxicity, visit frequency, or logistical demands so that your patients are adherent to therapy and also having quality of life?

Dr. Sikander Ailawadhi:

So extremely important question that you raise. Treatments are clearly becoming very complex. The needs on the patients, the needs on the caregivers, the needs from the practice, from us, from our staff, they are just increasing tremendously. Literally, our nurses had to be trained how to handle CRS-related calls, how to handle neurotox-related calls with all these new drugs, et cetera. So it’s required a lot of that training of our staff, our side first, to be able to handle all the anticipated and unanticipated asks from the patients.

That said, I think the goal, and I think this is something that as a myeloma community, all of us have to spend time on is try to, like you rightly pointed out, decrease the treatment burden. I would say decrease the burden on our patients collectively. We have several drugs that have been now approved where we’re still learning how to use them. None of us in the medical community feel that those drugs are optimally dosed or their frequency is optimal, et cetera. So I think in the day-to-day work, what we’re doing is providing tons of education and awareness opportunities for patients and caregivers to try to arm them with as much information as possible prior to starting a treatment, so preparing them.

We have an effort going on which is a little bit tricky and difficult, but almost giving an informed consent-type information to patients and caregivers when they’re even starting standard of care treatment because just preparing them. We don’t do that for standard of care. We give tons of information for trials. We just don’t give that much information for standard of care. We have certain videos that have been prepared, and we share those. We host those on YouTube, for example, and we share those with patients and give them links saying, hey, watch this, see this. It’ll help you understand, et cetera.

We’re also planning some, so I think we’re trying to harmonize our own practice where we’re trying to say, okay, at such and such intervals as a group, we have decided we will do XYZ testing. Based on that, we will discuss with the patients the current data, and if need be, we will space out their treatment so their visit frequency decreases, et cetera. And then at our institution, we also have, at Mayo Clinic, we also have this opportunity for what’s called remote patient monitoring, so all our patients who start on treatments like bispecifics and sometimes even CAR-T patients are kind of connected with our remote patient monitoring infrastructure where they don’t even have to come in that frequently, and, of course, they don’t have to stay in the hospital.

We treat all our bispecifics as outpatient, but by doing those things, we’re trying to reduce their burden for having to deal with the treatment and its impact. We want the patients to feel better. We want them to have improved quality of life, and frankly, we want them to stay home when they don’t really need to be out of the home. We’re trying to gear an infrastructure, we’re really far from being perfect. I think in a myeloma community, all of us are far from being at that optimal state, but slowly, gradually, we’re making progress towards it.

Dr. Nicole Rochester:

Thank you so much, Dr. Ailawadhi. Dr. Cole, kind of staying on this same topic, when we think about patients who are receiving multiple lines of therapy or maybe those who are experiencing functional decline, how do you adjust your strategies over time to engage with those patients?

Dr. Craig Cole:

Yeah, it is, as patients kind of go through their journey and as they go through treatment lines, I am sure not to assume that the treatment goals that we had 10 years ago are the same treatment goals that we have today. And so it is, we have these periodic, when I’m meeting with my patient, meeting with their family we reassess what are the goals of treatment? I had a patient with high-risk disease that had come in to see me a few years ago and their goal was, “I want to be MRD-negative.” And I was like, okay, we have studies, we have therapies that can try to achieve that goal. And then later on, years later, after a couple of relapses, we talked about what was the goal? And their goals had shifted. Their next therapy after they had failed a CAR T could have been more aggressive this, more aggressive that. And I said, “So with everything that’s been happening is, what’s your current goal? What do you want out of the next decision that we make?”

And they said, “Really, I just want to have enough energy to go to my granddaughter’s graduation.” And it wasn’t so much being MRD-negative, but it was very different. And so we de-emphasized a lot of the lab tests the M proteins and started really working on that aspect, which included involving a lot of palliative care during their treatment journey. And I think one important point is that involving the team shouldn’t be a surprise. When the team walks in the room with me, it shouldn’t be, “Oh, my goodness, I must be dying.” It’s that, “Yes, I met the social worker. Yes, I’ve met the palliative care doctor years ago, months ago. Yeah, I know these people.”

And when the goals have changed, enacting the multidisciplinary team isn’t such a surprise. And it makes that a much more comfortable transition and is not a surprise. A lot of patients say when they see palliative care, they’d never met them before. They’re that can be really frightening to meet a new person like that. In that situation, where they’ve met them before, they have rapport already, then it’s not such a bad transition. And then all of us we circle the wagons around what that goal is. And I tell my patients, that may change in a few months, it may in a few years, your goal, but make sure you verbalize that to me and make sure that I always ask that.

Dr. Nicole Rochester:

Thank you so much, Dr. Cole. Well, as we prepare to wrap up, we’re going to talk a little bit about treatment priorities and how they may differ between patients, their care partners, and their clinicians. So, Dr. Ailawadhi, in your experience, what are the most common differences in treatment priorities that you’ve encountered? Maybe you can share one example and how you successfully navigated those challenges in those situations.

Dr. Sikander Ailawadhi:

Sure, absolutely. So there’s actually, I think in myeloma, we’re lucky to have some of this question even supported by research. So there have been a couple of studies now done, one through the IMF even, where they looked at the doctors’ priorities and the patients’ priorities. And there is also some similar work that Dr. Cole and I actually have been able to collaborate on together and present at ASH a few years ago. And it seems that the doctor’s priorities are always very different from the patient’s. The doctors are always focused on this primary objective, secondary objective, PFS, OS, response rate, MRD negativity.

And majority of the times, while the patients do want to live longer, please don’t misunderstand me, but the focus on quality of life, the focus on symptom control, the focus on burden on the patient and their caregiver and the family, et cetera, is paramount and weighing them down all the time. So I think trying to understand, which I think Dr. Cole mentioned very nicely, is trying to understand that patient’s goals. What are they looking for in the treatment? And trying to meet them at that level becomes extremely important.

And if I was to give another example of specifically where things changed, I think Dr. Cole mentioned, for example, a graduation for a patient’s family member or child. I’ve had similar experiences where we came in with treatment options. So I’ll share with you, there is one patient, very dear patient, where it’s been a constant struggle to figure out the treatment options for that person because, to me, she may look like a myeloma patient, but when I try to dig deeper over these past maybe six or seven or eight years, I’ve known her, she is a grandmother who has custody of her grandkids and is taking care of them. She has her own daughter who’s going through some medical and family issues of her own so cannot take care of the grandkids or her kids.

So this patient of mine has custody of all her grandchildren. She lives about 30 to 40 minutes away from where we are. So the distance is a constraint. I’ve tried my best connecting her with their local community hematologist, but somehow that didn’t work out for her. So she insists on coming here. So on the face of it, while our team talks about, oh, it’s so difficult to get her to come or oh, so difficult to check labs. It’s so difficult to do this or that. I’ve been discussing CAR T with that patient for the past almost a year.

We have never been able to do that for the simple reason logistics don’t line up. So finally, we said, okay, why do we even keep talking about CAR T? This is the ideal patient who’s going to go to the bispecific antibody as long as we can get her to do that.  And so we’re tailoring the treatment plan to that patient’s goals because while she wants to live longer, she wants to take care of her grandkids. She wants to be able to stay at home as much as possible, provide some medical care to her own daughter while getting herself treated. So I think understanding these goals and trying to tailor the patient’s treatment with all our knowledge and all our biases and all our preconceived notions and this and that, the bottom line is that the needs of that patient must come first. And whatever the literature, the this, the that, the articles, the trials, that has to all conform to that one patient’s need at that moment.

Dr. Nicole Rochester:

Absolutely. Thank you so much. This has been an amazing conversation. Unfortunately, it is time to wrap up. And I want to give you all the opportunity to share closing thoughts. You’ve shared so many important tips today. So many things that the audience will be able to take away from this conversation. But if you were to summarize it all into one closing thought, I’ll start with you, Dr. Cole. What’s the most important takeaway message that you want to leave other health care professionals who are watching?

Dr. Craig Cole:

No, and thanks for the opportunity. This is a passion of mine. And what I hopefully get across to our fellows and our residents is no matter what the discipline, no matter what the field of oncology, these are really, really important things to incorporate in your practice. And I think the one thing is that patient empowerment and patient education is not a one-time event. It is a style of practice. It’s something that you do every visit, every day, every day that you see a patient.

And the question I always ask myself is, have I empowered this patient? Are they engaged to this disease? And I never blame the patient.  I always take a look inward if I’m not achieving those goals. So my takeaway is, know your patient. Know who your patient really is. Just like Sikander said, she may be a myeloma patient, but she’s someone’s grandmother and primary caregiver. Knowing those details goes a long way, goes a long way in patient care and patient empowerment. That levels the playing field between you and your patient so that your partners in the journey, and it doesn’t have a paternalistic dynamic.

Dr. Nicole Rochester:

Thank you so much, Dr. Cole. What about you, Dr. Ailawadhi? What’s your closing take-home message for the audience?

Dr. Sikander Ailawadhi:

So, Dr. Rochester, again, thanks for this opportunity. I think this has been a great discussion. So I think my thought, quite similar to what Craig mentioned, I think, as you’ve pointed out a couple of times in these questions, that the treatment and management of myeloma is becoming very complex. And when we try to say on top of that, we have to reduce disparity, we have to improve shared decision-making, we have to give the patient time, we have to empower the patient, we have to educate them, the patient should know what questions to ask.

There is so much of this competing thoughts with constraint on time, staff, et cetera. My thought or my suggestion to our colleagues who are listening out there or spending time, and I thank them for spending their time listening to this program, is that it’s probably a good idea to take a step back, think of all the barriers in the ways of that patient, in the ways of a physician, in the ways of that practice, try to list all those barriers and start somewhere, start making some changes in your workflow, in your practice, and how you see the patient, how you talk to the patient.

We are, I would say, blessed, that one, the field is improving, but we also have several better tools, AI tools, communication tools, et cetera. So once you have an inventory of the barriers, start chipping away at them. And slowly, gradually, you will start seeing incremental improvements in how we are empowering the patient, but also empowering the practice, empowering the physicians, the healthcare providers. I think it’s important to help them start somewhere and hopefully incremental changes will make that bigger, meaningful difference.

Dr. Nicole Rochester:

Well, thank you both for just everything that you shared today. I feel like if I were to summarize this conversation, you all really talked about the art of medicine. There’s the science of medicine, and there’s the art of medicine. And so you all have really just articulated the art of medicine and the importance of connecting with patients and meeting them where they are and getting to know them as people outside of their disease. So thank you again for this riveting conversation. And thank you to those of you who are tuning in to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester. Have an amazing day.


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Cervical Cancer Disparities | Key Factors for Black and Latinx Patients

Dr. Abigail Zamorano of McGovern Medical School at UT Health Houston discusses disparities in cervical cancer treatment among Black and Latinx communities. She highlights key barriers—access to care, transportation, and caregiving—and shares strategies for patients and providers to improve treatment access and continuity of care.

[ACT]IVATION TIP

“Speak up about barriers—patients should seek support and resources, while providers must anticipate challenges and involve caregivers in care planning.”

See More From [ACT]IVATED Cervical Cancer

Download Resource Guide Download Spanish Resource Guide

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Screening Saves Lives: Overcoming Barriers to Cervical Cancer Prevention

Advancing Cervical Cancer Care: Breakthrough Treatments and the Power of Clinical Trials

Advancing Cervical Cancer Care: Breakthrough Treatments and the Power of Clinical Trials

Understanding Antibody Drug Conjugates (ADCs) in Cervical Cancer

Understanding Antibody Drug Conjugates (ADCs) in Cervical Cancer


Transcript:

Lisa Hatfield:

Dr. Zamorano, what disparities have you observed in the treatment of cervical cancer among different demographic groups? And can you provide an overview of key barriers for Black and Latinx communities? And how can patients avoid or address these barriers?

Dr. Abigail Zamorano:

I say that the most significant barriers are also what are causing the disparities. The most significant barriers are typically in a patient’s ability to identify a problem and then to access a provider for a diagnosis and then ultimately access a provider team for treatment.

This is a multi-step process that really relies on patients’ ability to access care whether through a hospital setting, an emergency room or a provider if they have insurance or a clinic that can provide screening or diagnosis without insurance, which can be really challenging to find, and it’s a difficult system to navigate.

When patients are ultimately diagnosed with cervical cancer, the most common treatment is a combination of both chemotherapy and radiation. Unfortunately, this treatment is really time-intensive. It’s every day and must be completed within a certain number of weeks. And so it can be really hard on patients to access this treatment, whether it’s for transportation difficulties, because they live far from their clinic, or sometimes transportation difficulties even if they only live five minutes from the clinic.

It’s also really hard on patients who have, who provide child or elder care, who work, who speak languages other than English, who have other responsibilities. And so I do encourage both provider teams and patients to speak up about any barriers that they might foresee and in order to best address them in order to make the diagnosis and then the treatment as seamless as possible.

My [ACT]IVATION tip for this question is to speak up about barriers and this applies to both providers and to patients. I really encourage patients to think about what their provider is recommending and to think about the different things that they’re going to need in order to meet all of those goals. I encourage patients to lean on their support groups in their family and their caregivers, because they’re probably going to need a little bit of help through this process.

I also encourage providers to think about what their patients might need, think about where their patients live, what resources they have, think about what support groups they have at home and for providers to also pay attention to their caregivers. The caregivers of patients are so important for patients to complete their therapy. And a lot of times we don’t ask the caregivers how they’re doing and what they’re going to need to help their patients. And so including the patient and the caregiver in the discussion is really important.

Lisa Hafield:

Okay, thank you, that’s great. And I do have one follow-up question in talking about barriers, particularly with access. So you have a clinic in Houston that does screenings in the Hispanic community. So if a patient comes in and is screened and the results come back abnormal on the screening, what is the next step for that patient? Will these clinics that could be around the country or throughout, in different states, will they provide continued care, or will they provide referrals for these patients who are already maybe having difficulty with access? What is the next step for those patients who may receive those abnormal results?

Dr. Abigail Zamorano:

An abnormal cervical cancer screen doesn’t always mean a cervical cancer. Most of the time it means a cervical pre-cancer. And that can be very low grade or very mild, which sometimes those go away on their own. Our bodies are really good at managing our own illnesses. And even with early pre-cancers, sometimes our immune systems help manage those. The higher grade pre-cancers that are closer to cancer typically do require a treatment. Our clinic does provide both the diagnosis of pre-cancer and the management. These are procedures that we perform in the clinic. 

They don’t need someone to be in the hospital or in the operating room, necessarily. So we’re able to provide all of these services in our clinic. Most clinics that provide cervical cancer screening, typically just provide the screening and then have other specialty clinics that they would refer out to for the management of abnormal results. Ours is a little unique because we do it all together, and we really aim to be a referral center for all of those clinics that do a great job at screening the population and reaching as many patients as possible. But we want to be the specialty center that then manages the cervical pre-cancer to prevent it from ever becoming cancer. For the patients that are ultimately diagnosed with cancer, we have referral patterns, and we have ways of navigating them to cancer-based therapy.

Understanding Your Role as a CAR T-Cell Therapy Care Partner

 Why is a care partner essential during the CAR T-cell therapy process? This animated video explains the role of care partner when supporting someone undergoing CAR T-cell therapy and provides advice and tips for their own self-care.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners 

Transcript:

As a care partner, you play an essential role in supporting your loved one through the CAR T-cell therapy process. Your responsibilities will go beyond emotional support into active caregiving, medical monitoring, and close communication with the healthcare team.  

It’s important to gather as much information as possible early on in the process.  

Start with these questions: 

  • Who are the essential members of my loved one’s healthcare team?
    • CAR-T therapy involves a multi-disciplinary team and you should know the members, who may include hematologists, oncologists, nurse practitioners, pharmacists, and social workers.  
  • What are my responsibilities as a care partner?
    • Your role is an essential part of your loved one’s recovery and may include administering medication, monitoring for side effects, and keeping track of medical appointments. 
  • What can I expect during the CAR-T therapy process?
    • Understanding how the process works and what your loved one will experience will help you prepare for CAR-T therapy and the recovery period.  
  • What can I expect when my loved one leaves the hospital?
    • When your loved one comes home, you need to understand how to assist them, what side effects to watch for, and when to call for help.  
  • Who do I contact in case of an emergency?
    • Know the 24/7 contact information for members of your healthcare team. Some side effects can escalate quickly, and fast action may be needed. 

And while you’re busy supporting your loved one, it’s crucial to recognize your own needs. Care partner burnout is real, and to provide the best care, you must stay mentally and physically healthy.  

So, what can you do? 

First, recognize when you’re stressed. Signs of burnout can include fatigue, irritability, or feeling overwhelmed. Don’t try to handle everything on your own. Ask family members for help and talk with friends – sharing your challenges can reduce stress.  

Remember to practice self-compassion – it can help you cope during stressful times and to manage unrealistic expectations that you may place on yourself. 

  • Next, arrange for help. If caring for your loved one becomes overwhelming, consider hiring professional in-home caregivers, even temporarily, to give yourself a break. 
  • Make self-care a priority. When time allows, take advantage of opportunities to recharge. Self-care is not selfish – it’s essential for your health AND for success in supporting your loved one. 
  • Finally, you don’t have to go through this alone. Ask about support. Many cancer centers offer resources and support groups specifically for care partners – you can start by talking to a social worker or a mental health professional about your needs. 

And, advocacy organizations like The Leukemia & Lymphoma Society (LLS), American Cancer Society, and Caregiver Action Network provide assistance for care partners, including helplines, counseling, and community connections. 

For more care partner tools and resources, visit powerfulpatients.org. 

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses the importance of seeking third-party support for managing mental health issues and provides guidance on addressing sexual health concerns during myeloma treatment. 

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

Related Resources:

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Symptom Management | An Expert’s Approach

Myeloma Symptom Management | An Expert’s Approach

Transcript:

Katherine Banwell:

If a patient or a caregiver is having trouble managing the emotional side of myeloma, whether that be anxiety, depression, or other mental health issues, how do you encourage them to cope with those feelings?  

Daniel Verina:

I think it’s always good – multiple times I say they always should talk to a third party. So, either reach out to our social worker team who are phenomenal at helping support patients, but even reaching out to psychiatrists or psychologists and getting another perspective. It is good to have a friend. It’s good to have family to discuss and talk to, but sometimes, I think, sometimes having somebody so close may not have the best perspective.  

But so, getting a third opinion or a clear lens in discussion to help guide them is a great way to do it. I also advise caregivers because of the burden of the calendars and the different tasks they have to do, I tell – even with my patients, I tell them to journal. Journal their day. Be able to get out there their voice from their mind into a piece of paper to help clear the mind and give clarity to move on for their next steps. It is a challenge.  

Katherine Banwell:

And you’re saying that that psychological support for the caregiver is just as important.  

Daniel Verina:

Absolutely. It’s the patient who also has cancer so does the caregiver have cancer too. So, you’re treating two people, not just the person who you’re giving the therapy to.  

Katherine Banwell:

We were talking about supporting the care partner and the patient in terms of mental and physical well-being. There’s a sexual aspect to that as well, right? 

Daniel Verina:

Absolutely. I think sexuality or sexual health is extremely important. I think the fear, what I have seen in my personal experiences, and it depends on each. And each person, part of this chess game, has a different view. So, the patient is sometimes nervous because they don’t want to hurt their caregiver because they’re on chemotherapy. And then, the caregiver might feel that they’re not prepared because they don’t want to cause any injuries because they’re on chemotherapy, right? What are their counts? May I hurt them? Will I give them an infection? Things like those kinds of things.  

And sometimes in both directions that the patient may lose the libido, the desire, and it has nothing to do with the caregiver and their attraction, right? It’s a physical change that the therapies that we give may diminish some of this physicality. So, explaining that to the patient and their caregiver, but also giving them that support. Having them be able to talk to a social worker, having them being able to talk to a therapist and say, “This is what I’m experiencing. How do I cope with this?”   

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses strategies to empower care partners and myeloma patients, emphasizing the long-term nature of the journey and providing guidelines for returning to activity post-treatment.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

Related Resources:

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

The Benefits of Shared Decision-Making for Myeloma Care

The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Katherine Banwell:

As a provider, Daniel, how do you empower care partners and their patients who have been diagnosed with myeloma?  

Daniel Verina:

I think with the cancer card or even myeloma, and I always say this, it’s truly a fact, I said it’s a journey. It’s a journey.  We are together. It’s the tortoise that wins the race, not the hare when it comes to myeloma. It’s very different because many patients may have an experience that a friend had a different type of cancer and their treatment ended in a year or two. So, and myeloma currently, it is a continuous type of treatment for many years.  

So, it’s getting them on board and understanding that there’s going to be wax and wanes in time. And we’re here for the long run together. I’ll ask questions continuously because every question is new to them. I might’ve heard the question 6 million times, but it’s their first time experiencing it and hearing it.  

Katherine Banwell:

Yeah. Well, and following treatment, how do you counsel patients who are returning to activity and exercise? Are there any guidelines they should follow?  

Daniel Verina:

Absolutely. I think it depends on how they feel, their physicality, depending on their age because myeloma really has now become a broad spectrum in age. Yes, it’s a more mature adult or older adult disease, but we’re seeing it happen in our patients in their 40s and their 50s. So, they want to return to activities. They say whatever they can tolerate. Making sure that they’re not doing heavy lifting because myeloma can affect the bone strength or cause fractures.

So, no power lifting or bungee jumping, I try to advise them not to do. But go back to what they enjoy the most. Bringing them back to close to what their normal living is, I think is one of the best ways that patients can tolerate it.  

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support? from Patient Empowerment Network on Vimeo.

Where can myeloma care partners find out more about available financial support? Nurse practitioner Daniel Verina discusses avenues for navigating the financial burden of care through social workers and organizations like the International Myeloma Foundation (IMF), and the importance of asking your healthcare team for resources.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

Transcript:

 Katherine Banwell:

How can caregivers find out more about financial support? 

Daniel Verina:

I think the great thing is talk to your social worker and your institution to see what available funds, what grants that are available for them to help support them through that. Also, inquire at their employment what is available for them through there. What does their insurance actually cover, right?  

Going to the International Myeloma Foundation website or the Multiple Myeloma Research Foundation website and seeing the support that they can get through those institutions and organizations and the key tools that they have there for them.   

Katherine Banwell:

I mean, there could be something as simple as not being able to pay for parking.   

Daniel Verina:

Absolutely. And I always ask. I tell my patients, “Ask.” I’ll be honest, at my institution, I never know whether they can punch the card and get free parking or not, but I say to them, “Please ask at the front desk. Ask our social workers if there are ways.” And if they’re getting bills that we don’t understand, one thing patients need to do, and their caregivers is to bring us the bills that they have.  

Because many times, in my experience, the patient has brought me a stack of bills after four months and said, “Look what I’m getting.” I said, “Well, why didn’t you tell me a month into this, not waiting four months?” So, it’s allowing them to know bring it to us and let’s see what we can do can. We can never always guarantee that we can eradicate their bills. But what I’m saying to them is we can try.  

Katherine Banwell:

Absolutely. That’s great advice, Daniel. Thank you so much for joining us.  

Daniel Verina:

Oh, thank you so much. 

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner from Patient Empowerment Network on Vimeo.

How can care partners monitor side effects from CAR T-cell therapy? Nurse practitioner Daniel Verina discusses the unique aspects of CAR T-cell therapy, guiding care partners on recognizing side effects like cytokine release syndrome and neurological changes, emphasizing communication with healthcare providers.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Is there anything you’d like to add about care partners and what they should know about the CAR T-cell process?   

Daniel Verina:

Absolutely. That some of the CAR T experience is that when patients reach the CAR T, they may already have a stem cell transplant earlier in their life, an autologous stem cell transplant. So, I will guide them and say there were some similar characteristics, meaning that there’s collection, there’s chemotherapy, and there’s a stay in the hospital.  

But some of the differences that their blood counts may not return as quickly as they did with an auto stem cell transplant.  So, they may see lower counts.  After a month or two, they may start to drop. So, to expect that some of these changes are normal or part of our pathway.  

But also, things that we need to look for and a caregiver should understand, that there are delayed effects, like cytokine release syndrome, or neurotoxicity’s that we see with CAR T can happen a couple of months down the line.  So, one of the important tools that a caregiver should have to watch and monitor patients longer on is being able to look for these toxicities. And there are many tools out there that are available through the IMF or the MMRF that the caregiver can say they’re not remembering as well, or I feel like they’re word searching.  

Even though the patient may come to us and sound and answer the questions appropriately, the caregiver says, you know what, I just feel like there’s something different.  And that’s a cue for us. I always call them the truth serum. The caregiver to me is the truth serum in the room.  So, I think one of those things is really teaching them to look for delayed side effects or adverse events that may occur even four, five, six months later.   

Katherine Banwell:

Can you give us an idea of what sort of side effects the care partner should be looking for? 

Daniel Verina:

So, in the hospital, patients can experience what we call cytokine release syndrome or fevers, fast heart rate, low blood pressures. And that could occur upfront, but it could happen later on in life.  Certain things also are neurotoxicity. So, having persistent headaches, memory loss, word searching, sometimes change in their gait, and sometimes even a little bit of a handshaking or tremor.  

So, neurological changes. Shuffling they may see. Weaknesses in their legs, things like that. So, they used to get up out of the chair very quickly, and now it takes them longer to do that. And those are signs that they should be calling their primary CAR T physicians and saying, “I’m seeing a change,” because the further out they go and if they’re doing successfully, we see them about every month or so compared to when they come out of the hospital. So, you want to alert the caregiver to call us as quickly and not wait until the next appointment. You never know.  

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized from Patient Empowerment Network on Vimeo.

What should care partners expect after CAR T-cell therapy? Nurse practitioner Daniel Verina offers tips for staying prepared, including advice on returning home, preparing the home post-therapy, and staying organized.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

We know that patients should be near a medical center for the first few weeks after the therapy. Do you have any organizational tips for how a care partner can best prepare for the return home?   

Daniel Verina:

Absolutely. So, yes, it is required. So, the patient generally stays in the hospital for two weeks and then it’s required for them to be very close to the hospital two weeks after that because it requires many visits. I think preparing for home is also knowing that they have adequate and support for transportation because sometimes the patient may have to come in two to three times a week for support usually in the bigger institutions.  

Also, reconnecting back with their local oncologist just to make sure that if something does happen and they can’t get to the cancer center quick enough, they have another support. And to also to be able to monitor that, make sure they have thermometers and blood pressure machines and things that are going to be there for them when they get home.  

Katherine Banwell:

Do you have any tips for making the physical space at home more comfortable?   

Daniel Verina:

You know, I always say that’s individualized and everybody’s home is different. So, it’s hard to say that. I always – I’m very minimalistic. So, I always say don’t have a lot of clutter because post-CAR T you may feel a little weak or tired. So, make sure that they’re not navigating around a lot of furniture. There’s not loose rugs, equipment like that.

They may need some support even in the showers. That they may need a shower chair depending on the patient’s physicality. But that’s a very good discussion to have before they leave the hospital. Maybe our social worker teams can set up DNS [Home Health Care] and be able to put some support into the home.    

Katherine Banwell:

Are there any supplies that care partners will need as they care for a patient at home?   

Daniel Verina:

Supplies are very simple; I’ll be honest with you. It’s generally thermometers and maybe an automated blood pressure machine, I think, and then a pad of paper and pens that work itself. And also, like I say, it’s having the transportation or having a backup of something if the patient doesn’t feel well to get there. But in supplies, no, the patient should eat what they normally eat. I would say not as spicy because they may not be able to tolerate it, but things like that.  

Katherine Banwell:

And a calendar, I would think would be pretty important.  

Daniel Verina:

I love calendars. I’m a calendar writer, so I like it usually on paper, but people like it on their phone. So, I always tell patients also to keep a diary of how they feel because they come to us and I think it’s very common where you go, I have a million questions to ask you, and then they forget. So, it’s always good to say, “Oh, he had a little – he might have had some loose stools or diarrhea on this day,” but then they forgot to tell you. So, I think it’s good to document those things. And even weight –    

Katherine Banwell:

Pardon me?  

Daniel Verina:

And even their weight. So, all their vital signs and weight should always be documented. 

Katherine Banwell:

Okay, thank you. Who is the best point of contact at a medical center if they need support?   

Daniel Verina:

It’s actually the medical team. The best support is the medical team, depending on it. So, and each institution, I’ll say, may have different ways of accessing it. We have a 24-hour hotline. So, when the patient doesn’t feel well, they can call directly in. If it’s simple questions, they can always use the EMR messaging services that we have at our institution. So, each institution may have a way of doing it, but I would say always reach out to the primary team.   

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina highlights the crucial role that care partners play during the CAR T-cell therapy process, offering advice on what they should expect throughout the journey, and emphasizing the importance of a support system and resources for patients and their care partners.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Daniel, the care partner is a vital team member in the CAR T process. Can you explain the role of a care partner?  

Daniel Verina:

Absolutely. I think one of the key ingredients, I think, in cancer care across the board is the caregiver. I think many times it’s forgotten because we’re very focused on the patient’s needs. But entirely, it’s not just the patient who has the cancer, it’s the caregiver who actually has the cancer or bears some of the burden. So, I think it’s important to always have them involved in all of the roles and each step that the patient goes through, and also try to provide them support that they may need that’s extra, not that the patient gets.   

Katherine Banwell:

Yeah. As a nurse practitioner, Daniel, you educate care partners about the CAR T-cell process. What are three key pieces of advice you share with care partners for patients who are considering CAR T-cell therapy?   

Daniel Verina:

There’s a few. So big three key points to this is that it’s a journey. One of the things, it’s not just a quick we’re going to do this in a month and then we’ll be moving on. It’s going to be for a couple of months or a few years that we may be together during this CAR T experience, one.

There’s going to be also many trips to your facility, your institution, your cancer center that are required to even getting part of the CAR T, working up for the CAR T before even having the cells manufactured and given back to them. And I think also having an extra support for them, so the caregiver also has to have support outside of them. So, if they’re not able to make a meeting or come to an appointment, they should have a backup or somebody even just to talk to outside of just the cancer center.   

Katherine Banwell:

For care partners, what support and resources do you recommend for their mental and physical well-being when caring for a loved one who’s undergoing CAR T?   

Daniel Verina:

Absolutely. I think you could even broad span that to all of cancer care itself, but especially with CAR T. There’s many resources out there that are available. So, the International Myeloma 

How Can Equitable CAR T-Cell Therapy Access Be Increased?

How Can Equitable CAR T-Cell Therapy Access Be Increased? from Patient Empowerment Network on Vimeo.

How can CAR T-cell therapy access issues be reduced? Expert Dr. Sikander Ailawadhi from Mayo Clinic explains some common access issues that can arise for patient CAR T care and some ways that providers and patient advocates are raising awareness about support resources.

[ACT]IVATION TIP

“…from a patient’s standpoint and role, while institutions are trying their best to provide the care wherever they can, from a patient standpoint, understanding what might be the specific barriers in their case to get to CAR T and trying to get to an institution that has the resources to help overcome and mitigate some of those barriers would be very important.”

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See More from [ACT]IVATED CAR T

Related Resources:

How Can Information Disparities on Emerging Therapies Be Addressed?

How Can Information Disparities on Emerging Therapies Be Addressed?

How Do Race and Ethnicity Impact CAR T Side Effects?

How Do Race and Ethnicity Impact CAR T Side Effects?

How Are Rural CAR T-Cell Therapy Barriers Being Addressed?

How Are Rural CAR T-Cell Therapy Barriers Being Addressed?

Transcript:

Lisa Hatfield:

How can healthcare systems ensure equitable access to CAR T-cell therapy for all eligible patients, regardless of demographic or economic factors?

Dr. Sikander Ailawadhi:

Lisa, it’s an important question of how do healthcare systems, what role they can play in providing equitable access to CAR T-cell therapy or care in general. And I think it’s also important to figure out what is the patient’s role in this, in addition to the healthcare system’s role. So, there are some institution-specific things, I don’t want to say issues or problems or whatever concerns, but things that sometimes can be barriers or sometimes are non-modifiable. For example, the type of insurances that are accepted or sometimes, for cell therapy, insurance companies actually have preferred centers they want patients to go to. That happens for stem cell transplant, that also happens for CAR T.

And a lot of that happens based on how the contracts are kind of designed or contracts are negotiated between an institution and an insurance company, et cetera, et cetera. I’ll be very frank, a lot of those details are way beyond my pay grade, so I won’t be able to go into the specifics of that. But what I can say is, a patient may not be able to…based on certain barriers, certain criteria, a patient may not be able to access CAR T-cell therapy at certain centers.

For example, let’s say there’s a patient in the Jackson metro area where I am, and they would like to come to Mayo Clinic, but their insurance and Mayo Clinic are not compatible. The patient may not be able to come for cell therapy, but yeah, that patient may be able to at least seek a consult. And through that consult, we’ll be able to then either connect the patient with a different center or give them details about, “hey, you know what, why don’t you consider going to X, Y, or Z and get the treatment over there?” I’ll be very frank, unlike the general thoughts around, well, everybody wants the patient to only come to them, I think those of us who are clinicians, academicians, educators, researchers, we want the right answer for every single patient. Whether that patient comes to me, one of my colleagues in a different institutions, one of my “competitors” in a different institution, it doesn’t matter, as long as the right treatment is coming to the patient.

So I think if a patient is not able to get to a treatment like CAR T, they need to understand, “What is the reason? Why am I not being able to get into it? Is there a barrier for distance, resources, insurance, education, just caregiver support? Why is it that I’m not getting it?” There should be enough buzz around CAR T that everybody should say, “Well, am I a candidate? If not, why not?” And once we find out what is the problem, that can be addressed. We are working quite hard in trying to get some of those accesses around the patients and different groups of patients, making them more equitable.

So for example, we do provide every CAR T-cell therapy patient with a social work consult. That social worker’s job is to figure out what are these barriers for that patient. But I understand that’s for the patients who have already come through the door to seeing us. But if a patient is not able to come to us because of some reason, as an institution, we are also making some efforts in trying to get more awareness and education to patients who are not coming to us, but are say, going to other institutions.

We are setting up webinars, going to patient support groups, talking, doing programs like this so that the information can be disseminated far and wide and anybody and everybody can benefit from it. So my activation tip for this question is, that from a patient’s standpoint and role, while institutions are trying their best to provide the care wherever they can, from a patient standpoint, understanding what might be the specific barriers in their case to get to CAR T and trying to get to an institution that has the resources to help overcome and mitigate some of those barriers would be very important.

Lisa Hatfield:

Thank you. That is why patients appreciate you because you’re willing to do what it takes to take care of your patients, even if it means sending them somewhere else. That is a characteristic of an excellent physician. 


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PODCAST: CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

 

Understanding CAR T-cell therapy and recovery is vital for care partners who are caring for a loved one undergoing this treatment approach. Dr. Shambavi Richard explains the CAR T-cell therapy process, potential complications, ongoing research in the field, and discusses how care partners can provide support at each stage of the process.

Dr. Shambavi Richard is the Co-Lead Physician for the Multiple Myeloma CAR-T Program at Mount Sinai Tisch Cancer Center. Learn more about Dr. Shambavi Richard.

Download Resource Guide

See More from The Care Partner Toolkit: CAR T-Cell Therapy


Transcript:

Katherine:

Today we’re going to learn about CAR T-cell therapy to help care partners understand how it works, what happens during recovery, and why care partners are so essential throughout the process. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. This will allow you to provide feedback about your experience today. And it will help us plan future webinars. Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today.  

Joining us is Dr. Shambavi Richard. Dr. Richard, welcome. Will you please introduce yourself? 

Dr. Richard:

Hi. I’m Shambavi Richard. I am in the myeloma faculty at Mount Sinai. I’m Associate Professor of Medicine. And I codirect the CAR T and cellular therapies for myeloma at my institution.    

Katherine:

Well, thank you so much for joining us today. We really appreciate you taking the time.  

Dr. Richard:

Thanks for having me.  

Katherine:

Let’s begin with the basics of CAR T-cell therapy. What is it? And maybe, actually, we could start with what CAR is short for.  

Dr. Richard:

So, CAR stands for chimeric antigen receptors, so CAR T cell is a chimeric antigen receptor T-cell therapy. What that means is T cells, which is one of the cells for immune system are actually come from the patient. They’re expanded and activated in a manufacturing facility. And there they undergo genetic modification to form the CAR T cells. And what’s special about the CAR T cells is that they have the capacity to recognize myeloma cells and are efficient killers of the myeloma cells.   

Katherine:

Who might this approach be right for? What determines eligibility? 

Dr. Richard:

So, interestingly enough, today as we speak, CAR T cells may be eligible for many, many different kinds of – in the phases, many different phases of the myeloma journey. When they were initially tested, as most new therapies are, they were tested on patients who had very advanced myeloma, really were not candidates or did not have great options for any other kinds of therapy. And when they got tested in these groups of patients, they really had stellar results that far outstripped anything else that we had as options for patients in those advanced stages of myeloma. So, the approval for CAR T cells as they stand today for myeloma is for advance myeloma with patients who have had four or more lines of therapy and have had exposure to pretty much the major three classes of therapies for myeloma which includes proteasome inhibitors, imides, and anti-CD38 antibody therapy.  

But having said that, now CAR T cells are being moved into earlier lines of therapy are now being tested in these in various clinical trials. And even for newly diagnosed myeloma patients to see if they are as good as autologous transplants. Are they better than autologous transplants? And so on and so forth. So, really that’s what I mean by saying for now CAR T cells are appropriate for anyone if they are candidates for clinical trials. But in terms of approved indications for CAR T therapy, those are for advanced myeloma patients who have had at least four lines of therapy.  

Katherine:

Dr. Richard, what are the potential side effects or complications of CAR T-cell therapy? 

Dr. Richard:

So, there are several possible side effects with CAR T therapy.  

It’s a little different from an autologous transplants. And I bring that up just to say because they are both cellular therapies, so are frequently compared and contrasted with autologous transplants which we have had for about three decades now. So, the main side effect after CAR T therapy is something called CRS or cytokine release syndrome. So, that happens when CAR T cells recognize the myeloma cells and kill them. A host of chemicals called cytokines are released in the body. And this can make a person feel like they have a bad case of the flu. So, it may be things like fevers, chills, body pains, headaches, loss of appetite, nausea, fatigue. So, these are some common symptoms of cytokine release syndrome. But these are the milder forms, so in more severe cases of cytokine release syndrome, you can have things like drop in blood pressure, drop in oxygen levels, needing supplementation with oxygen.  

Or in terms of drop in pressure, they may need fluid resuscitation or sometimes even pressors, blood pressure medications that help to boost the blood pressure. So, that’s one major side effect. Another is something called neurotoxicity.  

So, you can have neurological side effects from CAR T therapy which when it occurs in the setting of CRS, that’s called ICANS or immune effector cell-associated neurotoxicity syndrome. That’s what that acronym stands for. And it has a constellation of symptoms such as confusion, disorientation, difficulty with some common everyday tasks. The handwriting may go off, attention deficit, things like that. But then in more severe forms of ICANS, you can actually have lethargy, coma, seizures, brain edema, so much more scary things.  

Then there is another form of toxicity called delayed neurotoxicity which looks completely different. Now you have things like Parkinson’s disease or neuropathies. Either cranial nerve neuropathies or peripheral neuropathies, Guillain-Barre which is a kind of ascending paralysis. So, all of these are also possible as neurotoxic side effects from CAR T therapy. Aside from these, there is another which is called HLH or macrophage activation syndrome or hemophagocytic lymphohistiocytosis syndrome wherein patients can have organ toxicity, a spiking ferritin levels, new fevers, new neurotoxic symptoms, additional lab abnormalities such as liver function test abnormalities. So, these are other forms of just general CAR T-cell toxicity.  

Then in addition to these, you can have infections, prolonged blood count abnormalities, cytopenia as we call it which can affect the white cells or the platelets or anemia and things like that. So, these are also possible. And then finally things like second primary malignancies which can happen, other malignancies that can happen that may be related to CAR T therapy. A lot of these are still being studied. We don’t have a good understanding of how frequently this happens. But these are all possible side effects of CAR T therapy.  

Katherine:

Do any of the complications have to result in hospitalization? Or can patients be treated outside the hospital? 

Dr. Richard:

So, the way things stand now, and this may be slightly different depending on the specific CAR T product.  

But we generally keep patients hospitalized for the first two weeks after the cell infusion. Most of the side effects such as the CRS and the ICANS tends to occur during this hospitalization phase. HLH and delayed neurotoxicities can occur while they’re still in the later phases of the hospitalization, or it can occur late after they get discharged from the hospital. Infections and cytopenias of course can happen for a while following CAR T therapy. Once they are discharged from the hospital, we ask that they stay close to us, usually within an hour or two of the hospital so that they can quickly come back in if there’s any issues. We see them quite frequently once they get discharged from the hospital. I see them at a minimum of once a week, more frequently at least a couple times a week, or even three times a week depending on what their blood count needs and monitoring needs are.   

So, we have them stay close to the hospital if they are far away. And the sponsor and our social worker, insurance can work together to figure out how to help them with the hotel costs if they have to stay close to us. So, that’s for an additional two weeks after they’ve discharged from the hospital. Following that, patients go back to their homes, but we still follow them quite frequently depending on what their needs are in terms of possible side effects.   

Katherine:

Dr. Richard, how is CAR T-cell therapy impacting the landscape of myeloma care?  

Dr. Richard:

So, as I’d hinted or alluded to previously, prior to CAR T cells appearing on the horizon, we had very limited options for patients who had had the first several lines of therapy.  

So, once they had been exposed to two proteasome inhibitors, two iMiDs, and then anti-CD38 antibody which is the three major class of myeloma drugs, they are then called triple class exposed or penta-exposed depending on how many of these drugs they’ve been exposed to.  

We had a study called the MAMMOTH study back – this was published back in 2019 prior to the era of CAR T cells and other T-cell directed therapies. And at the time they had looked at patients who were triple class exposed, and who had been exposed to daratumumab were refractory to daratumumab as their last line of therapy. And what we saw was with their next line of therapy or whatever else was available at the time for patients such as these, their expected response rate was only about 30 percent or so, number one.  

Two, their outlook was very poor with a median progression-free survival which means that the amount of time that patients could go without the disease coming back, and that median progression-free survival was less than six months. And their expected even median overall survival was well under a year. So, that was what the landscape looked like when CAR T cells came onto the scene. For instance, the CART2 trials, which is one of the approved products which is cilta-cel which is what we have now, we actually saw for this same group of patients, the response rates was now 98 percent.  

Deep responses were 83 percent. And we now have the final readout of their median progression-free survival which is almost three years. So, you can see a significant difference.  

Under six months, media progression-free survival to three years. And over 50 percent of the patients were living over three years. So, that’s kind of where we are at. I mean so it was no small improvement. This considerably kind of almost reset the bar and has given a new lease of hope and life to patients who had advance myeloma. And one of the things we say in myeloma is although we don’t, as yet, say that myeloma’s curable, we are working towards that. But we are also giving options for other treatments, other research to be effective in patients just by keeping them around longer.  

Katherine:

Have there been any recent research developments involving CAR T-cell therapy that patients should know about? 

Dr. Richard:

Absolutely. So, much as I have highlighted all the hope and the optimism and the good things about this, the fact is we’re still not curing people with these therapies.  

So, we called this a plateau in the survival curve which means that if we achieve that plateau, that means the disease is probably not coming back, and we have essentially the definition of cured. But we’re not seeing that. We’re still seeing a downslope in the survival curves of myeloma which means that patients are still relapsing in spite of these excellent therapies. So, there’s a lot of research going on into why are patients still relapsing? Is it because they’re losing the antigen which the CAR T cells are recognizing? Is it because the CAR T cells are no longer effective even though the antigen is still present? Is it because there’s a considerable lag time between the patients being freezed or collected, the cells being collected for the genetic modification in the lab to the time when the patients can actually receive these cells? And that can be anywhere between four to eight weeks.  

So, during this time period, patients with advanced myeloma may not remain static with their disease. The disease is progressing. They’re getting worse. They may not be candidates for these kinds of therapies. So, one of the areas of research is how can we speed up this process, this manufacture process? How can we make it much more available? Because they’re limited by the manufacturing facilities, their abilities to have these viral vectors, to be able to transduce these cells and genetically modify. So, can we take them off of those kinds of things? Can we automate this? Can we improve these manufacturing platforms? So, a lot of different things are being tested. And then as I’d also mentioned earlier, right now they’re approved for advance myeloma, but what if we can bring them up earlier? Are patients actually going to get cured by that? Are they going to have a much better progression-free survival with that versus waiting until they’re very advanced? So, these are all many, many things that are being looked at.  

In addition, a lot of these CAR T products, these approved products, all them are all recognizing one antigen on the myeloma cell. Now there are products are being looked at that are dual target antigen recognition ability. So, that’s another thing. So, maybe if the CAR T cells are missing one of the antigens, and they’re not able to use that to kill the myeloma cell, maybe the other antigen can pick up the slack. So, these are various things that are being looked at.  

Katherine:

Yeah. Well, now that we understand a bit more about what it is, let’s walk through the process.  

When a patient goes through CAR T, what happens first? 

Dr. Richard:

So, the first step is being referred to a CAR T physician. Right now, CAR T therapies can only be done in certain tertiary care institutions, not even all tertiary care institutions.   

They have to have the ability to manage and process cellular therapies. So, that’s limited right there. So, patients have to be referred to centers, so actually do these CAR T kind of therapies. Once they meet with the myeloma physician who deals with CAR Ts as well, then the way it works in our institution is then we assess them for which is the best kind of CAR T product the patient may be eligible for. Are they eligible for clinical trials? Do they fit the profile for clinical trial? Are the patients willing for clinical trails? If not, are they candidates for one of the commercially approved products? As I said, there is specific criteria. Patients have to have had at least four lines of therapy to be able to receive a commercially approved CAR T product.  

If that is the case, and once the process has been explained to the patient, they have to go through all the financials, the insurance approval. These are very expensive propositions. So, the insurance goes through all of the criteria to make sure that they will approve the product. Once the insurance approves, they also going through the institutional approval process to make sure that these are again being done for the right patient, and that they go through the institutional approval. There are several patient specific characteristics.

For instance, we want a patient who has the support structure to be able to support a therapy like this. They have to have a good performance status. They have to be relatively able to be able to handle these kinds of therapies. I went through all of those side effects that are possible. We look at their cardiac status. We look at the neurological status.  

We look at the pace at which their disease is escalating because these are again advanced patients. So, if somebody is relapsing very quickly, they may not have the time to wait to get to a slot for the apheresis, and then to wait again for the manufacturing to happen. So, we look at all of that. We look at their kidney function. And then finally in terms of their psychosocial, do they have their caretakers, the support system? Where do they live? Are they able to access our center? Are they from out of state? If so, how are we going to manage during those initial months until they’re able, stable enough to be discharged back to their referring physician?

So, we look at several things, so we have multiple teams of people, social work, pharmacy who looks at all of these different – and explains the pharmaceutical aspects of all of this, our finance team, our coordinators who put all of this together.  For the apheresis, we are involved with a apheresis team.   

And then the cell therapy lab that processes the cells, the vascular team to put in the lines required for the apheresis. So, there are several, several groups. And then if we need to get a consultation from our expert cardiologist or neurooncologist, we need to have those teams involved as well.  

Katherine:

How long does it take to know whether the treatment has been successful? 

Dr. Richard:

So, we get a sense depending on what their blood markers look like, we can get a sense within the first month if the patient is actually responding to the treatment or not. I generally wait for the first three months to do a actual formal assessment with their bone marrow and their PET scans and everything else because right around then they’ve gone through the initial acute post CAR T period. And so, at the time of the bone marrow we assess what it looks like, we send for a test called MRD which is minimal residual disease to see where they’re at with that. 

And PET scans to look at any areas of skeletal lesions or even extramedullary disease that they may have. So, I would say within the first month we get a sense, but by three months we do that first formal assessment.  

Katherine:

You mentioned the role of the care partner, and you’ve talked about the recovery process and how involved it is. What do you feel is the care partner’s role in helping a patient through the process? 

Dr. Richard:

I think much of it is emotional and psychological support. I think that is very, very key. But in terms of actually what they do, we do ask that they have a caretaker available 24/7 if possible at least for the first month or so following their CAR T. And this is because they need a lot of support going back and forth from wherever they’re residing whether it’s a hotel or whether it’s their own home because there are a lot of clinic visits during that time.  

We do ask that the patients don’t drive for at least the first month, maybe even the first couple of months following the CAR T because again they can have neurological side effects that may be somewhat subtle. Their judgement may be impaired, but they may not look that different. So, a caretaker who knows them well is very useful in saying, “There’s something weird about how Joe’s acting lately,” or something like that.

So, that’s very important as well to bring them back and forth and to manage all of these. And if there’s a problem in the middle of the night, if they’re having new fevers, they’re suddenly neurologically altered, they do need a person to be able to handle things and bring them in and get the adequate medical support.  

Katherine:

What questions should care partners be asking if they begin the process? 

Dr. Richard:

I think a good understanding of all of those.  

So, whatever that takes for each individual person. We have patients of various different kinds who have come to us, some who have researched it and really know what’s going on out there, and others who are comparatively, “What is this CAR T thing? We have no idea what this is all about.” So, I meet each one where they are. I go over the entire process. I touch on all the different things that we just spoke about. I talk about the logistics of it. I talk about the timing. One of the traffic jams is being able to get that initial fresis slot to be able to even send the cells to the manufacturing.

So, there’s a question of managing the resources and making sure that patients are getting to their CAR T slots in a timely manner. So, a good part of it is an understanding that all of this is not something that happens overnight. There is several moving parts. There is a way, and their system, and a way that all of these have to be aligned.  

So, I pretty much answer whatever they have, but I think questions touching on all of this. And finally, they exact thing that you asked, “How is it that they can help? What are the things that they can do to help?” And I think that is hugely important as well.   

Katherine:

Yeah. Why is it so important that care partners let the care team know about any changes in the patient? 

Dr. Richard:

I think the earlier we know of changes, the better. We can handle these things. There is a time sensitivity to a lot of this. If issues that happen are not addressed right away, they can evolve to more severe condition. And once if they’re more severe, they’re less likely to respond right away to the therapeutic maneuvers that we have. So, I think that’s really important.  

And if they’re outpatient, we do bring them in for hospitalization right away. If there is anything that is – the delayed forms of these side effects can sometimes be also a little bit harder to resolve and turn around. So, it’s important that they come back to the hospital right away, get admitted for the workup, so that we can escalate the speed at which things can be done.  

Katherine:

Being a care partner can be overwhelming at times. Do you have any advice to help care partners as they cope with their role? 

Dr. Richard:

There’s a lot of support groups. I really encourage them to start talking to a social worker right away. So, our social workers really do get engaged in the process pretty early. There are many different kinds of support groups. There are support groups that are myeloma specific, and then support groups within those that are offshoots for CAR T patients, so people either thinking of going through a CAR T or in the middle of it or even post CAR T.  

All the anxiety of the monitoring and, “Is the disease going to come back?” And that can weigh heavily on the caretaker as well. So, an emotionally supported caretaker and patient just makes it a lot easier for everybody including the medical care teams to be able to handle all of this.   

Katherine:

We have a few questions that are community sent in prior to the program. I’d like to start with Melissa’s question. “Do you have any advice for handling the emotional highs and lows as well as personality changes within the relationship?”  

Dr. Richard:

That can be a challenging one. And as medical doctors, we tend to not be the best people to usually – and so what I really draw on is social work and our coordinator’s support for that kind of thing. At our institution we have a affiliate of care of supportive care oncology team who help with a lot of the symptom management or anything like that. 

And if it’s something that actually needs more than just counseling, if they actually need medications, then we have our psychiatric oncology groups who also help with a lot of those. So, I think being prepared for any of these is important, but I think a lot can be handled just by having a good adequate support of care that starts right at the beginning of the process before things start getting overwhelming.  

Katherine:

Yeah. Here’s another question we received: What kind of nutrition does a patient need during this process? And how can the care giver ensure adequate nutritional support? 

Dr. Richard:

So, among our various teams, we have actually a nutritionist who actually meets with the patient about the time of their discharge from the hospital. And they give them a lot of guidelines about how to handle various dietary things.  

In general, going into CAR T, a well-balanced healthy diet is always a good thing. Maintain your diet well as much as possible. Following the CAR T process, we do follow guidelines for what we call a neutropenic diet wherein well-cooked meats are preferable to anything undercooked because that’s where you can have a lot of bacteria. We advise against raw or undercooked meats of all kinds. Pasteurized foods obviously much better than don’t go for the unpasteurized. Don’t go for the soft cheeses which tends to be unpasteurized or typical wherein you can have – and also in terms of nuts, prefer the roasted nuts rather than the raw nuts and things like that. So, any fruits and vegetables, we advise that they should be well washed and cleaned. 

We advise against the thin-skinned ones that are harder to clean. We prefer rather the thick-skinned fruits where you can wash it well and then peel it. So, those have less tendency to spread diseases and bacteria and things like that. So, those are some of the things that we advise. And we do give them a dietary sheet wherein they have the dos and don’ts, but because it’s easy to forget some of these. We prefer don’t go to delis. Don’t get deli meat. So, if you like those kinds of things, get the packaged form where you can control the quality of things like that.  

Katherine:

What about something like raw fish? Is that recommended or not? 

Dr. Richard:

We prefer it not. Raw fish again like smoked fish and things like that, we prefer to avoid those things at least for the first few months after CAR T. We generally make these somewhat straight for the first three months.  

Post CAR T patients are immunosuppressed for a long time. There’s no great science at the three-month mark because I think at three months plus one day you’re probably still at some risk. And everybody’s immune recovery is different. So, patients who are immunosuppressed for a long time, I say, “Just try to stick to these unless it’s something that you really can’t do without.” But it’s much better to try to maintain these guidelines for as long as possible.  

Katherine:

Another audience member wants to know, “What is the difference between CAR T and bispecific antibody treatment?” 

Dr. Richard:

Oh, good one. So, as I mentioned, with the CAR Ts, the T cells that are taken from the patient is actually genetically modified. So, these are kind of souped-up T cells if you want to put it that way because one, they efficiently recognize that myeloma cells, and two, they are efficient killers of the myeloma cells which are the two main jobs of your T cells.  

With a bispecific antibody, this is an off the shelf thing, so this is not manufactured specifically for the patient. And then it’s a drug. And the drug has two receptors. One recognizes the myeloma cell, and the other recognizes the patient’s own T cells. So, these are unmodified T cells that just floating around. And they bring the patient’s T cells to the myeloma cell to kill it. So, that’s the difference. It’s an off the shelf product versus a manufactured. The T cells are your own. They are not manufactured in any way, but otherwise they’re kind of similar in that they’re both T-cell directed killing mechanisms, and they recognize the myeloma cell.  

Katherine:

Okay. Thank you for that. Thoughtful answers, Dr. Richard. We appreicate it. Before we end the program, I’d like to get your final thoughts. What message would you like to leave the audience with? 

Dr. Richard:

I want to leave a message of hope. I want to leave a message that there is so much research going on.  

And we couldn’t do any of these without the involvement of patients and their caregivers. And that’s how we have moved the field forward to this extent. And that’s how we continue to move the field forward. There’s a lot of reason to hope. And the Holy Grail, of course, is cure. And that’s what the entire myeloma community is working toward getting to that goal one day. So, I want to thank the patients and the caregivers for helping to move this, so helping themselves and helping others.  

Katherine:

Well, Dr. Richard, thank you so much for taking the time to join us today.  

Dr. Richard:

Thank you for having me.  

Katherine:

And thank you to all of our partners.  

If you’d like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan programs in the future. To access tools to help you become a proactive care partner, visit powerfulpatients.org.  

I’m Katherine Banwell. Thanks for being with us. 

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery from Patient Empowerment Network on Vimeo.

Understanding CAR T-cell therapy and recovery is vital for care partners who are caring for a loved one undergoing this treatment approach. Dr. Shambavi Richard explains the CAR T-cell therapy process, potential complications, ongoing research in the field, and discusses how care partners can provide support at each stage of the process.

Bio:
Dr. Shambavi Richard is the Co-Lead Physician for the Multiple Myeloma CAR-T Program at Mount Sinai Tisch Cancer Center. Learn more about Dr. Shambavi Richard.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

What Resources Are Available for CAR T-Cell Therapy Care Partners

What Resources Are Available for CAR T-Cell Therapy Care Partners

Are You a CAR T-Cell Therapy Care Partner_ Why You Should Ask for Help

Are You A CAR T-Cell Therapy Care Partner? Why You Should Ask For Help

Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners

Transcript:

Katherine:

Today we’re going to learn about CAR T-cell therapy to help care partners understand how it works, what happens during recovery, and why care partners are so essential throughout the process. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. This will allow you to provide feedback about your experience today. And it will help us plan future webinars. Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today.  

Joining us is Dr. Shambavi Richard. Dr. Richard, welcome. Will you please introduce yourself? 

Dr. Richard:

Hi. I’m Shambavi Richard. I am in the myeloma faculty at Mount Sinai. I’m Associate Professor of Medicine. And I codirect the CAR T and cellular therapies for myeloma at my institution.    

Katherine:

Well, thank you so much for joining us today. We really appreciate you taking the time.  

Dr. Richard:

Thanks for having me.  

Katherine:

Let’s begin with the basics of CAR T-cell therapy. What is it? And maybe, actually, we could start with what CAR is short for.  

Dr. Richard:

So, CAR stands for chimeric antigen receptors, so CAR T cell is a chimeric antigen receptor T-cell therapy. What that means is T cells, which is one of the cells for immune system are actually come from the patient. They’re expanded and activated in a manufacturing facility. And there they undergo genetic modification to form the CAR T cells. And what’s special about the CAR T cells is that they have the capacity to recognize myeloma cells and are efficient killers of the myeloma cells.   

Katherine:

Who might this approach be right for? What determines eligibility? 

Dr. Richard:

So, interestingly enough, today as we speak, CAR T cells may be eligible for many, many different kinds of – in the phases, many different phases of the myeloma journey. When they were initially tested, as most new therapies are, they were tested on patients who had very advanced myeloma, really were not candidates or did not have great options for any other kinds of therapy. And when they got tested in these groups of patients, they really had stellar results that far outstripped anything else that we had as options for patients in those advanced stages of myeloma. So, the approval for CAR T cells as they stand today for myeloma is for advance myeloma with patients who have had four or more lines of therapy and have had exposure to pretty much the major three classes of therapies for myeloma which includes proteasome inhibitors, imides, and anti-CD38 antibody therapy.  

But having said that, now CAR T cells are being moved into earlier lines of therapy are now being tested in these in various clinical trials. And even for newly diagnosed myeloma patients to see if they are as good as autologous transplants. Are they better than autologous transplants? And so on and so forth. So, really that’s what I mean by saying for now CAR T cells are appropriate for anyone if they are candidates for clinical trials. But in terms of approved indications for CAR T therapy, those are for advanced myeloma patients who have had at least four lines of therapy.  

Katherine:

Dr. Richard, what are the potential side effects or complications of CAR T-cell therapy? 

Dr. Richard:

So, there are several possible side effects with CAR T therapy.  

It’s a little different from an autologous transplants. And I bring that up just to say because they are both cellular therapies, so are frequently compared and contrasted with autologous transplants which we have had for about three decades now. So, the main side effect after CAR T therapy is something called CRS or cytokine release syndrome. So, that happens when CAR T cells recognize the myeloma cells and kill them. A host of chemicals called cytokines are released in the body. And this can make a person feel like they have a bad case of the flu. So, it may be things like fevers, chills, body pains, headaches, loss of appetite, nausea, fatigue. So, these are some common symptoms of cytokine release syndrome. But these are the milder forms, so in more severe cases of cytokine release syndrome, you can have things like drop in blood pressure, drop in oxygen levels, needing supplementation with oxygen.  

Or in terms of drop in pressure, they may need fluid resuscitation or sometimes even pressors, blood pressure medications that help to boost the blood pressure. So, that’s one major side effect. Another is something called neurotoxicity.  

So, you can have neurological side effects from CAR T therapy which when it occurs in the setting of CRS, that’s called ICANS or immune effector cell-associated neurotoxicity syndrome. That’s what that acronym stands for. And it has a constellation of symptoms such as confusion, disorientation, difficulty with some common everyday tasks. The handwriting may go off, attention deficit, things like that. But then in more severe forms of ICANS, you can actually have lethargy, coma, seizures, brain edema, so much more scary things.  

Then there is another form of toxicity called delayed neurotoxicity which looks completely different. Now you have things like Parkinson’s disease or neuropathies. Either cranial nerve neuropathies or peripheral neuropathies, Guillain-Barre which is a kind of ascending paralysis. So, all of these are also possible as neurotoxic side effects from CAR T therapy. Aside from these, there is another which is called HLH or macrophage activation syndrome or hemophagocytic lymphohistiocytosis syndrome wherein patients can have organ toxicity, a spiking ferritin levels, new fevers, new neurotoxic symptoms, additional lab abnormalities such as liver function test abnormalities. So, these are other forms of just general CAR T-cell toxicity.  

Then in addition to these, you can have infections, prolonged blood count abnormalities, cytopenia as we call it which can affect the white cells or the platelets or anemia and things like that. So, these are also possible. And then finally things like second primary malignancies which can happen, other malignancies that can happen that may be related to CAR T therapy. A lot of these are still being studied. We don’t have a good understanding of how frequently this happens. But these are all possible side effects of CAR T therapy.  

Katherine:

Do any of the complications have to result in hospitalization? Or can patients be treated outside the hospital? 

Dr. Richard:

So, the way things stand now, and this may be slightly different depending on the specific CAR T product.  

But we generally keep patients hospitalized for the first two weeks after the cell infusion. Most of the side effects such as the CRS and the ICANS tends to occur during this hospitalization phase. HLH and delayed neurotoxicities can occur while they’re still in the later phases of the hospitalization, or it can occur late after they get discharged from the hospital. Infections and cytopenias of course can happen for a while following CAR T therapy. Once they are discharged from the hospital, we ask that they stay close to us, usually within an hour or two of the hospital so that they can quickly come back in if there’s any issues. We see them quite frequently once they get discharged from the hospital. I see them at a minimum of once a week, more frequently at least a couple times a week, or even three times a week depending on what their blood count needs and monitoring needs are.   

So, we have them stay close to the hospital if they are far away. And the sponsor and our social worker, insurance can work together to figure out how to help them with the hotel costs if they have to stay close to us. So, that’s for an additional two weeks after they’ve discharged from the hospital. Following that, patients go back to their homes, but we still follow them quite frequently depending on what their needs are in terms of possible side effects.   

Katherine:

Dr. Richard, how is CAR T-cell therapy impacting the landscape of myeloma care?  

Dr. Richard:

So, as I’d hinted or alluded to previously, prior to CAR T cells appearing on the horizon, we had very limited options for patients who had had the first several lines of therapy.  

So, once they had been exposed to two proteasome inhibitors, two iMiDs, and then anti-CD38 antibody which is the three major class of myeloma drugs, they are then called triple class exposed or penta-exposed depending on how many of these drugs they’ve been exposed to.  

We had a study called the MAMMOTH study back – this was published back in 2019 prior to the era of CAR T cells and other T-cell directed therapies. And at the time they had looked at patients who were triple class exposed, and who had been exposed to daratumumab were refractory to daratumumab as their last line of therapy. And what we saw was with their next line of therapy or whatever else was available at the time for patients such as these, their expected response rate was only about 30 percent or so, number one.  

Two, their outlook was very poor with a median progression-free survival which means that the amount of time that patients could go without the disease coming back, and that median progression-free survival was less than six months. And their expected even median overall survival was well under a year. So, that was what the landscape looked like when CAR T cells came onto the scene. For instance, the CART2 trials, which is one of the approved products which is cilta-cel which is what we have now, we actually saw for this same group of patients, the response rates was now 98 percent.  

Deep responses were 83 percent. And we now have the final readout of their median progression-free survival which is almost three years. So, you can see a significant difference.  

Under six months, media progression-free survival to three years. And over 50 percent of the patients were living over three years. So, that’s kind of where we are at. I mean so it was no small improvement. This considerably kind of almost reset the bar and has given a new lease of hope and life to patients who had advance myeloma. And one of the things we say in myeloma is although we don’t, as yet, say that myeloma’s curable, we are working towards that. But we are also giving options for other treatments, other research to be effective in patients just by keeping them around longer.  

Katherine:

Have there been any recent research developments involving CAR T-cell therapy that patients should know about? 

Dr. Richard:

Absolutely. So, much as I have highlighted all the hope and the optimism and the good things about this, the fact is we’re still not curing people with these therapies.  

So, we called this a plateau in the survival curve which means that if we achieve that plateau, that means the disease is probably not coming back, and we have essentially the definition of cured. But we’re not seeing that. We’re still seeing a downslope in the survival curves of myeloma which means that patients are still relapsing in spite of these excellent therapies. So, there’s a lot of research going on into why are patients still relapsing? Is it because they’re losing the antigen which the CAR T cells are recognizing? Is it because the CAR T cells are no longer effective even though the antigen is still present? Is it because there’s a considerable lag time between the patients being freezed or collected, the cells being collected for the genetic modification in the lab to the time when the patients can actually receive these cells? And that can be anywhere between four to eight weeks.  

So, during this time period, patients with advanced myeloma may not remain static with their disease. The disease is progressing. They’re getting worse. They may not be candidates for these kinds of therapies. So, one of the areas of research is how can we speed up this process, this manufacture process? How can we make it much more available? Because they’re limited by the manufacturing facilities, their abilities to have these viral vectors, to be able to transduce these cells and genetically modify. So, can we take them off of those kinds of things? Can we automate this? Can we improve these manufacturing platforms? So, a lot of different things are being tested. And then as I’d also mentioned earlier, right now they’re approved for advance myeloma, but what if we can bring them up earlier? Are patients actually going to get cured by that? Are they going to have a much better progression-free survival with that versus waiting until they’re very advanced? So, these are all many, many things that are being looked at.  

In addition, a lot of these CAR T products, these approved products, all them are all recognizing one antigen on the myeloma cell. Now there are products are being looked at that are dual target antigen recognition ability. So, that’s another thing. So, maybe if the CAR T cells are missing one of the antigens, and they’re not able to use that to kill the myeloma cell, maybe the other antigen can pick up the slack. So, these are various things that are being looked at.  

Katherine:

Yeah. Well, now that we understand a bit more about what it is, let’s walk through the process.  

When a patient goes through CAR T, what happens first? 

Dr. Richard:

So, the first step is being referred to a CAR T physician. Right now, CAR T therapies can only be done in certain tertiary care institutions, not even all tertiary care institutions.   

They have to have the ability to manage and process cellular therapies. So, that’s limited right there. So, patients have to be referred to centers, so actually do these CAR T kind of therapies. Once they meet with the myeloma physician who deals with CAR Ts as well, then the way it works in our institution is then we assess them for which is the best kind of CAR T product the patient may be eligible for. Are they eligible for clinical trials? Do they fit the profile for clinical trial? Are the patients willing for clinical trails? If not, are they candidates for one of the commercially approved products? As I said, there is specific criteria. Patients have to have had at least four lines of therapy to be able to receive a commercially approved CAR T product.  

If that is the case, and once the process has been explained to the patient, they have to go through all the financials, the insurance approval. These are very expensive propositions. So, the insurance goes through all of the criteria to make sure that they will approve the product. Once the insurance approves, they also going through the institutional approval process to make sure that these are again being done for the right patient, and that they go through the institutional approval. There are several patient specific characteristics.

For instance, we want a patient who has the support structure to be able to support a therapy like this. They have to have a good performance status. They have to be relatively able to be able to handle these kinds of therapies. I went through all of those side effects that are possible. We look at their cardiac status. We look at the neurological status.  

We look at the pace at which their disease is escalating because these are again advanced patients. So, if somebody is relapsing very quickly, they may not have the time to wait to get to a slot for the apheresis, and then to wait again for the manufacturing to happen. So, we look at all of that. We look at their kidney function. And then finally in terms of their psychosocial, do they have their caretakers, the support system? Where do they live? Are they able to access our center? Are they from out of state? If so, how are we going to manage during those initial months until they’re able, stable enough to be discharged back to their referring physician?

So, we look at several things, so we have multiple teams of people, social work, pharmacy who looks at all of these different – and explains the pharmaceutical aspects of all of this, our finance team, our coordinators who put all of this together.  For the apheresis, we are involved with a apheresis team.   

And then the cell therapy lab that processes the cells, the vascular team to put in the lines required for the apheresis. So, there are several, several groups. And then if we need to get a consultation from our expert cardiologist or neurooncologist, we need to have those teams involved as well.  

Katherine:

How long does it take to know whether the treatment has been successful? 

Dr. Richard:

So, we get a sense depending on what their blood markers look like, we can get a sense within the first month if the patient is actually responding to the treatment or not. I generally wait for the first three months to do a actual formal assessment with their bone marrow and their PET scans and everything else because right around then they’ve gone through the initial acute post CAR T period. And so, at the time of the bone marrow we assess what it looks like, we send for a test called MRD which is minimal residual disease to see where they’re at with that. 

And PET scans to look at any areas of skeletal lesions or even extramedullary disease that they may have. So, I would say within the first month we get a sense, but by three months we do that first formal assessment.  

Katherine:

You mentioned the role of the care partner, and you’ve talked about the recovery process and how involved it is. What do you feel is the care partner’s role in helping a patient through the process? 

Dr. Richard:

I think much of it is emotional and psychological support. I think that is very, very key. But in terms of actually what they do, we do ask that they have a caretaker available 24/7 if possible at least for the first month or so following their CAR T. And this is because they need a lot of support going back and forth from wherever they’re residing whether it’s a hotel or whether it’s their own home because there are a lot of clinic visits during that time.  

We do ask that the patients don’t drive for at least the first month, maybe even the first couple of months following the CAR T because again they can have neurological side effects that may be somewhat subtle. Their judgement may be impaired, but they may not look that different. So, a caretaker who knows them well is very useful in saying, “There’s something weird about how Joe’s acting lately,” or something like that.

So, that’s very important as well to bring them back and forth and to manage all of these. And if there’s a problem in the middle of the night, if they’re having new fevers, they’re suddenly neurologically altered, they do need a person to be able to handle things and bring them in and get the adequate medical support.  

Katherine:

What questions should care partners be asking if they begin the process? 

Dr. Richard:

I think a good understanding of all of those.  

So, whatever that takes for each individual person. We have patients of various different kinds who have come to us, some who have researched it and really know what’s going on out there, and others who are comparatively, “What is this CAR T thing? We have no idea what this is all about.” So, I meet each one where they are. I go over the entire process. I touch on all the different things that we just spoke about. I talk about the logistics of it. I talk about the timing. One of the traffic jams is being able to get that initial fresis slot to be able to even send the cells to the manufacturing.

So, there’s a question of managing the resources and making sure that patients are getting to their CAR T slots in a timely manner. So, a good part of it is an understanding that all of this is not something that happens overnight. There is several moving parts. There is a way, and their system, and a way that all of these have to be aligned.  

So, I pretty much answer whatever they have, but I think questions touching on all of this. And finally, they exact thing that you asked, “How is it that they can help? What are the things that they can do to help?” And I think that is hugely important as well.   

Katherine:

Yeah. Why is it so important that care partners let the care team know about any changes in the patient? 

Dr. Richard:

I think the earlier we know of changes, the better. We can handle these things. There is a time sensitivity to a lot of this. If issues that happen are not addressed right away, they can evolve to more severe condition. And once if they’re more severe, they’re less likely to respond right away to the therapeutic maneuvers that we have. So, I think that’s really important.  

And if they’re outpatient, we do bring them in for hospitalization right away. If there is anything that is – the delayed forms of these side effects can sometimes be also a little bit harder to resolve and turn around. So, it’s important that they come back to the hospital right away, get admitted for the workup, so that we can escalate the speed at which things can be done.  

Katherine:

Being a care partner can be overwhelming at times. Do you have any advice to help care partners as they cope with their role? 

Dr. Richard:

There’s a lot of support groups. I really encourage them to start talking to a social worker right away. So, our social workers really do get engaged in the process pretty early. There are many different kinds of support groups. There are support groups that are myeloma specific, and then support groups within those that are offshoots for CAR T patients, so people either thinking of going through a CAR T or in the middle of it or even post CAR T.  

All the anxiety of the monitoring and, “Is the disease going to come back?” And that can weigh heavily on the caretaker as well. So, an emotionally supported caretaker and patient just makes it a lot easier for everybody including the medical care teams to be able to handle all of this.   

Katherine:

We have a few questions that are community sent in prior to the program. I’d like to start with Melissa’s question. “Do you have any advice for handling the emotional highs and lows as well as personality changes within the relationship?”  

Dr. Richard:

That can be a challenging one. And as medical doctors, we tend to not be the best people to usually – and so what I really draw on is social work and our coordinator’s support for that kind of thing. At our institution we have a affiliate of care of supportive care oncology team who help with a lot of the symptom management or anything like that. 

And if it’s something that actually needs more than just counseling, if they actually need medications, then we have our psychiatric oncology groups who also help with a lot of those. So, I think being prepared for any of these is important, but I think a lot can be handled just by having a good adequate support of care that starts right at the beginning of the process before things start getting overwhelming.  

Katherine:

Yeah. Here’s another question we received: What kind of nutrition does a patient need during this process? And how can the care giver ensure adequate nutritional support? 

Dr. Richard:

So, among our various teams, we have actually a nutritionist who actually meets with the patient about the time of their discharge from the hospital. And they give them a lot of guidelines about how to handle various dietary things.  

In general, going into CAR T, a well-balanced healthy diet is always a good thing. Maintain your diet well as much as possible. Following the CAR T process, we do follow guidelines for what we call a neutropenic diet wherein well-cooked meats are preferable to anything undercooked because that’s where you can have a lot of bacteria. We advise against raw or undercooked meats of all kinds. Pasteurized foods obviously much better than don’t go for the unpasteurized. Don’t go for the soft cheeses which tends to be unpasteurized or typical wherein you can have – and also in terms of nuts, prefer the roasted nuts rather than the raw nuts and things like that. So, any fruits and vegetables, we advise that they should be well washed and cleaned. 

We advise against the thin-skinned ones that are harder to clean. We prefer rather the thick-skinned fruits where you can wash it well and then peel it. So, those have less tendency to spread diseases and bacteria and things like that. So, those are some of the things that we advise. And we do give them a dietary sheet wherein they have the dos and don’ts, but because it’s easy to forget some of these. We prefer don’t go to delis. Don’t get deli meat. So, if you like those kinds of things, get the packaged form where you can control the quality of things like that.  

Katherine:

What about something like raw fish? Is that recommended or not? 

Dr. Richard:

We prefer it not. Raw fish again like smoked fish and things like that, we prefer to avoid those things at least for the first few months after CAR T. We generally make these somewhat straight for the first three months.  

Post CAR T patients are immunosuppressed for a long time. There’s no great science at the three-month mark because I think at three months plus one day you’re probably still at some risk. And everybody’s immune recovery is different. So, patients who are immunosuppressed for a long time, I say, “Just try to stick to these unless it’s something that you really can’t do without.” But it’s much better to try to maintain these guidelines for as long as possible.  

Katherine:

Another audience member wants to know, “What is the difference between CAR T and bispecific antibody treatment?” 

Dr. Richard:

Oh, good one. So, as I mentioned, with the CAR Ts, the T cells that are taken from the patient is actually genetically modified. So, these are kind of souped-up T cells if you want to put it that way because one, they efficiently recognize that myeloma cells, and two, they are efficient killers of the myeloma cells which are the two main jobs of your T cells.  

With a bispecific antibody, this is an off the shelf thing, so this is not manufactured specifically for the patient. And then it’s a drug. And the drug has two receptors. One recognizes the myeloma cell, and the other recognizes the patient’s own T cells. So, these are unmodified T cells that just floating around. And they bring the patient’s T cells to the myeloma cell to kill it. So, that’s the difference. It’s an off the shelf product versus a manufactured. The T cells are your own. They are not manufactured in any way, but otherwise they’re kind of similar in that they’re both T-cell directed killing mechanisms, and they recognize the myeloma cell.  

Katherine:

Okay. Thank you for that. Thoughtful answers, Dr. Richard. We appreicate it. Before we end the program, I’d like to get your final thoughts. What message would you like to leave the audience with? 

Dr. Richard:

I want to leave a message of hope. I want to leave a message that there is so much research going on.  

And we couldn’t do any of these without the involvement of patients and their caregivers. And that’s how we have moved the field forward to this extent. And that’s how we continue to move the field forward. There’s a lot of reason to hope. And the Holy Grail, of course, is cure. And that’s what the entire myeloma community is working toward getting to that goal one day. So, I want to thank the patients and the caregivers for helping to move this, so helping themselves and helping others.  

Katherine:

Well, Dr. Richard, thank you so much for taking the time to join us today.  

Dr. Richard:

Thank you for having me.  

Katherine:

And thank you to all of our partners.  

If you’d like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan programs in the future. To access tools to help you become a proactive care partner, visit powerfulpatients.org.  

I’m Katherine Banwell. Thanks for being with us. 

How to Access Myeloma Financial Resources

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If you need help paying for myeloma care, where do you start? Yu Mee Song, an oncology social worker, reviews several resources, including copay assistance programs and advocacy groups.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

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Transcript:

Katherine Banwell:

Yu Mee, many of the newer myeloma therapies can be quite costly. If a patient is seeking financial support, where would you suggest they start? 

Yu Mee Song:

Many of the pharmaceutical companies provide financial assistance  if you meet their eligibility criteria.   

So, you can start there with – with the help of your oncology social worker. There are other great organizations that provide a significant  copay assistance and also  reimbursement with your insurance premiums and coinsurance. Some of the ones that we use often are, Leukemia & Lymphoma Society, HealthWell Foundation is another great organization, PAN F is another organization that provide copay assistance, and P-A-F Copay Relief Foundation.  

Katherine Banwell:

Okay. And, uh – uh, you as a social worker would have that information for a patient to – to direct them in the – the right path. 

Yu Mee Song:

Yes. Yeah. Because they would also need assistance from us and the physician, verifying certain – that they’re in treatment.  

 Katherine Banwell:

Right. Yeah. That makes sense. 

The Value of Myeloma Support Groups and How to Join

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Transcript:

Katherine Banwell:

Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant? 

Yu Mee Song:

So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and  we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them. 

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.  

Katherine Banwell:

How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support? 

Yu Mee Song:

There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.  

So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.  

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

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Transcript:

Katherine Banwell:

For patients who are considering CAR T-cell therapy, what three key pieces of advice would you have for them?  

Yu Mee Song:

I think it’s really important to have someone accompany you to maybe the initial consultation.  

Or if they can’t physically be with you to have them available by phone or to listen in on a conference call because there’s so much information that’s provided. It’s – it’s a multi-step, complicated process, so it’s good to have a – another set of ears helping you to stay organized, take notes maybe, keep a calendar.  

Another thing is to plan ahead. Plan for time away from work. You may need to apply for FMLA. If you are a caregiver of young children or older parents, make arrangements for that. Especially if you live a distance from the treatment center, you may need to stay  close to the hospital for a couple of weeks after your discharge for your CAR T-cell infusion.  

Katherine Banwell:

Yeah.  

Yu Mee Song:

And then I would say another tip is to stay connected to home, so there are many online forums that you can use to – for – for your friends and family to provide support in that way and for you to share information. And maybe bring pictures or something cozy from home to remind you of home because you will be – be away for some time.