Tag Archive for: treatment goals

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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Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making

How can experts strike a balance between urgency and shared decision-making? Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald of Dana-Farber share how they navigate the urgency of starting treatment while prioritizing shared decision-making in small cell lung cancer care. They explore the importance of open communication, normalizing patient overwhelm, and building trust through collaborative care. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Transcript:

Dr. Nicole Rochester:

Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald: 

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have.I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester::

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting. And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

Dr. Jacob Sands:

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma. I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective.

And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out? Now, that being said, even with all that effort, the room spins around people.

And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I  really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis.


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Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care from Patient Empowerment Network on Vimeo.

This animated video reviews the types of myeloma, essential testing following a myeloma diagnosis, and advice for working with your healthcare team for the best overall care.

See More from Collaborate Myeloma

Related Resources:

Collaborate | Being an Empowered Myeloma Patient

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

The Benefits of Shared Decision-Making for Myeloma Care


Transcript:

Bianca: 

Welcome back! I’m Bianca, and I’m a nurse. I specialize in caring for people with myeloma. And this is Suzanne, a myeloma patient advocate.  

In this video, we are going to learn more about diagnosis and testing, and how test results may impact myeloma care. 

Suzanne: 

That’s right, Bianca. Most patients want to–and should– understand their diagnosis. Let’s start with the basics. Can you explain the different types of myeloma? 

Bianca: 

You bet. Let’s start with MGUS, which stands for monoclonal gammopathy of undetermined significance. MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine. This type of myeloma doesn’t require treatment but should be monitored regularly. 

Smoldering myeloma is a very slow-growing type of myeloma. It also does not present with symptoms. Patients with smoldering myeloma have a higher chance of needing treatment, so blood and urine studies are ordered regularly. 

And then there’s multiple myeloma, which is a buildup of plasma cells in the bone marrow that crowds out healthy cells, and causes symptoms and other problems in the body. Multiple myeloma requires treatment, and there are a number of approaches available. 

Suzanne: 

Thanks for explaining the difference. When I was initially diagnosed, I underwent a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.  

Bianca: 

Those are the standard tests when diagnosing myeloma. Your healthcare team should also order a more in-depth FISH test, which comes from the bone marrow biopsy sample, and FISH  testing can provide a better understanding of your disease. This is important because the results may impact your treatment options. 

Suzanne: 

Right—and it’s important ensure that you have had all necessary testing including this more in-depth test. You should also review the lab results with your healthcare team. You can ask questions like:  

  • Am I high-risk or low-risk?  
  • What do the results mean? 
  • How will the results impact my options for therapy? 
  • And, how often should testing be repeated? 

Bianca: 

That’s good advice, Suzanne. All of the information gathered during your diagnosis, or following a relapse, should be considered as well as your overall health when deciding on a care plan.   

And, as you’ve modeled, working with your healthcare team to make therapy choices is essential. This is a process called shared decision-making, which basically means that patients and their providers collaborate on healthcare decisions. Participating in this process encourages patients to engage in their care, helping them to feel more confident about the approaches they choose. 

Suzanne: 

That’s right! Working WITH my healthcare team makes me feel included and brings peace of mind when considering my options.  

Bianca: 

That’s the way it should be—you should always be at the center of your care. So, when considering a plan with your healthcare team, here are a few key steps: 

  • Start by understanding your diagnosis. 
  • Develop a good relationship with your healthcare team so that you can participate in your care. 
  • Ensure you have had all essential testing, including in-depth testing. 
  • Discuss the tests results with your doctor and ask questions about what they mean. 
  • And, as always, do research on your own and confirm what you’ve learned with your healthcare team. 

Suzanne: 

And don’t forget to visit powerfulpatients.org/myeloma to view more videos with Bianca and me. Thank you for joining us!  

The Benefits of Shared Decision-Making for Myeloma Care

The Benefits of Shared Decision-Making for Myeloma Care from Patient Empowerment Network on Vimeo.

Why is working WITH your myeloma care team to determine a treatment plan so important? Dr. Sikander Ailawadhi reviews the benefits of the concept of shared decision-making and explains how myeloma treatment goals affect a patient’s care plan.

Dr. Sikander Ailawadhi is a hematologist and oncologist specializing in myeloma at Mayo Clinic in Jacksonville, Florida. Learn more about Dr. Ailawadhi.

Related Resources:

Understanding Myeloma Testing and Monitoring | An Overview

Understanding Myeloma Testing and Monitoring | An Overview

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

Available Myeloma Treatment Options for Patients | An Overview

Available Myeloma Treatment Options for Patients | An Overview

Transcript:

Katherine:

So, when it comes to choosing therapy for myeloma, it’s important to work with your healthcare team to identify what might be best for you. How would you define shared decision-making and why is this so critical to properly managing life with myeloma?  

Dr. Ailawadhi:

Excellent question, Katherine. Shared decision-making or a process in which the physician, the health care team, and the patient, their caregivers, everybody comes together, shared, to make a decision that we feel is in the best interest for that patient at that time. That is the whole concept.  

Whenever we think about treatment decisions, in our mind, the three main components that have to be considered every single time. Not just newly diagnosed or relapsed or third line or whatever, every single time a treatment decision has been taken, we must consider patient-related factors. What is their preference? What are their goals? Do they have caregiver support? How far do they live? Do they want IV? Pills? Any side effects that are there?  

Comorbidities? Other issues? Financial conditions? Everything comes into play, patient-related factors. Then, there are disease-related factors. How fast is the disease growing? Is this new? Is this old disease, high-risk, low-risk, or standard risk? Or what has been given before, et cetera. So, patient and disease-related. And the number three is the treatment-related factors. What is being considered for the patient? What are the ins and outs, pros, and cons?   

All of this has to be laid out in front of the patient and preferably also their caregiver if the patient has someone who they can share their decision with.  

And when we put all of that in the mix, we come up with a decision which is hopefully in the patient’s best interest. They are more likely to go through with it. They are informed. They are involved in their care. And then, hopefully, if the patient starts on a treatment that they are interested in, knowledgeable about, and committed to, we’ll be able to keep the patient on that longer term and get the best benefit out of it.  

So, in my mind, the main reason for shared decision-making is to make sure my patient is committed to that treatment. They understand that treatment. And we make this kind of bond between us as clinicians and our teams and the patient and their home team, their family team, their caregiver team so that everybody is working together with a singular goal. Right treatment for the right patient at the right time because it must be patient-centric, not research or clinician, or drug-centric. 

Katherine:

What are myeloma treatment goals, and how are they determined?   

Dr. Ailawadhi:

So, I think the myeloma treatment goals can be very different depending on what vantage points you’re looking from. My treatment goal is to provide the best treatment for my patient that has least side effects, gets a deep control, and my patient’s able to live long with a good quality of life. Okay. But that’s my goal.  I need to figure out what my patient’s goals are, and sometimes our patient’s goals are very different.  A patient’s goal might be that they want to really avoid side effects. Well, they want to live, lead their quality of life, and keep traveling. And this happens on a day-to-day basis.  

Just the other day, one of the patients said, “Well, I really want to keep driving around in my RV with my wife, because that is what we had wanted to do at this point of our life. What can you do to help me control my disease, but keep me driving my RV?” And we literally had to figure out where all they were traveling. We identified clinics close to them and connected with physicians so that they could continue their treatment wherever they were. So, the patient’s goals are very important, and in fact, I would say they are paramount. So, understanding what the patient wants. They may be wanting to control pain. They may be wanting to just live longer.  

They may be wanting to delay treatment so that they could watch their daughter’s soccer game. I’m just saying that the goals can be very different. It is important to lay them out. Every time you’re making a treatment decision, the goals should be laid out into short-, mid-, and long-term goals. I should bring my goals to the discussion. The patient should bring their goals to the discussion, and we come up with whatever is the best answer for them that suits them.  

Evolve Multiple Myeloma Resource Guide

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Collaborate | Being an Empowered Myeloma Patient

Collaborate | Being an Empowered Myeloma Patient from Patient Empowerment Network on Vimeo.

When facing a myeloma diagnosis, how can you actively engage in your care? This animated video shares tips and advice for becoming empowered in your care, including understanding and setting treatment goals and educating yourself about myeloma.

See More from Collaborate Myeloma

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Questions and Considerations When Making Myeloma Treatment Decisions

How to Thrive and Set Myeloma Treatment Goals

What Should Myeloma Patients Ask About Developing Research


Transcript:

Bianca: 

Hi! I’m Bianca, and I’m a nurse specializing in myeloma. And this is Suzanne, who is living with myeloma.  

Together, we’re going to guide you through a series of videos to help you learn more about your myeloma and we’ll share tips to help you play an active role in your care and treatment decisions. 

Suzanne, I must say, you’re a great example of an empowered patient.  

Suzanne: 

Thank you, Bianca! It wasn’t always the case, but I’ve had some expert guidance from my healthcare team – including you!  

Bianca, what does it mean to be an empowered patient, exactly?  

Bianca: 

We can start with the World Health Organization’s definition of patient empowerment, which is: “a process through which people gain greater control over decisions and actions affecting their health.” 

Suzanne: 

That sounds right to me—as I’ve become more engaged in my care, I’ve definitely felt more confident and in control of decisions.  But when I was first diagnosed with myeloma, I was overwhelmed…and so was my family. Once we took proactive steps to learn more about my diagnosis and find the right healthcare team, I was able to access better overall care and to feel confident about my role in decisions.  

Bianca: 

Exactly, Suzanne. Let’s walk through some keys steps to becoming empowered, starting with diagnosis and education: 

  • When considering your care team, it’s a good idea to seek a second opinion with a myeloma specialist.  
  • A specialist can confirm your diagnosis, help you define your treatment goals, and provide peace of mind about your decisions.  
  • And, you should also educate yourself about your myeloma. If you’re watching this video on the Patient Empowerment Network website, you’ve already taken this step! 
  • In addition, there are a number of other advocacy groups specific to myeloma that provide a wealth of resources and support. You can ask your healthcare team for recommendations for learning about myeloma.  

Suzanne: 

That’s right, Bianca. And, it’s useful to access to your online patient portal, if available. You can use the portal to view medical records and test results and to communicate with your healthcare team.  

And as I’ve learned, it’s also important to actively participate in your care. This means speaking up and asking questions, which is not always easy. Bianca, what advice do you have for better communication with your healthcare team? 

Bianca: 

  • First, always prepare for appointments by writing down a list of questions in advance. You can use the Notes app on your smart phone or download one of the Office Visit Planners on the Patient Empowerment Network website to help you organize your thoughts.   
  • And, try to bring a friend or loved one to appointments to help you remember information and to take notes. 
  • Finally, it’s essential to realize that your doctor wants to know how you are doing and is there to help you. If you are hesitant about a treatment option or a side effect is bothering you, let someone on your healthcare team know. You can even send a message through your patient portal. 

Suzanne: 

That’s great advice, Bianca! I like the convenience of communicating through the patient portal, particularly if questions come up after my office visit. Remember, you have a voice in your care decisions, so speak up and ask questions.   

Bianca: 

That’s right! And, visit powerfulpatients.org/myeloma to view more videos with Suzanne and me.   

Thanks for joining us!  

What Is the Role of Bispecific Antibody Therapy in the Future of Myeloma Care?

What Is the Role of Bispecific Antibody Therapy in the Future of Myeloma Care? from Patient Empowerment Network on Vimeo.

From the 2023 American Society of Hematology (ASH) annual meeting in San Diego, Dr. Peter Forsberg discusses how new data and learnings around bispecific antibodies may allow this newer myeloma therapy to be used more broadly in the clinical setting.

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

See More from Evolve Myeloma

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What Should Myeloma Patients Ask About Developing Research

What Should Myeloma Patients Ask About Developing Research?

Questions to Ask Your Doctor About CAR T-Cell Therapy

Questions to Ask Your Doctor About CAR T-Cell Therapy

What Myeloma Patients Need to Know About Bispecific Antibodies

What Myeloma Patients Need to Know About Bispecific Antibodies

Transcript:

Dr. Peter Forsberg:

The role of bispecific antibodies is one that’s evolving quickly. We’ve had new therapies approved over the past 12 months. We may get more approvals in the future. And we’re certainly going to get increasing data around using those treatments in our clinics outside of the controlled clinical trial setting as well as maybe information around more diverse utilization in different treatment settings.   

So, I think these are going to be medicines that are used much more broadly in the future than they are now. Right now, they have a really impactful role in a certain group of patients.  

I think that’s going to become something that’s broader in the future. And I really do think there’s something that’s going to help us to improve on already a really good group of options in earlier relapsed settings and maybe even upfront treatment of myeloma in the future. 

So, a lot to be figured out, a lot of refinement in the future about how and when to use these treatments. But it’s very clear that they’re going to have a huge impact in different settings.  

What Should Myeloma Patients Ask About Developing Research?

What Should Myeloma Patients Ask About Developing Research? from Patient Empowerment Network on Vimeo.

Myeloma research is evolving quickly, so what should patients ask their doctor to stay up to date? Dr. Timothy Schmidt, a myeloma specialist, shares advice.

Dr. Timothy Schmidt is an Assistant Professor in the Department of Medicine, Division of Hematology, Medical Oncology and Palliative Care at the University of Wisconsin School of Medicine and Public Health. More about Dr. Schmidt.

See More from Evolve Myeloma

Related Resources:

What Is the Role of Bispecific Antibody Therapy in the Future of Myeloma Care? 

How Is Bispecific Antibody Therapy Changing Myeloma Care

How Is Bispecific Antibody Therapy Changing Myeloma Care?

Myeloma CAR T-Cell Therapy_ How Does It Work and What Are the Risks

Myeloma CAR T-Cell Therapy: How Does It Work and What Are the Risks? 

Transcript:

Dr. Timothy Schmidt:

I think that in terms of new and developing options, patients should be asking their healthcare provider, their oncologist if they have experience using some of these newer drugs, specifically, the bispecific antibodies and CAR T-cell therapies. 

A lot of centers are starting to use these, particularly academic centers and some larger community centers as well. But not everywhere has experience using these. And so, asking your provider if it’s something that they would be a candidate for, particularly if the current treatment that patients are on is not working. And if your provider is not necessarily familiar with them, do they know somebody who is.  

And could you go at least for a discussion to talk to a myeloma specialist about whether these medications are right for you or whether there’s a clinical trial that they might be a candidate for, because what we’ve learned is that earlier implementation of some of these really effective therapies can really be a big deal for patients with myeloma. 

Patients can learn more about clinical trials from a variety of different outlets. I think the first place to start is with your local provider, your oncologist, asking that person if there is a clinical trial available. Most likely, the local provider is going to be able to point the patient in the right direction or at least let them know if something is going to be feasible for them. After that, often it involves reaching out to a local center, an academic center and getting a referral to somebody to see what is available at that site.   

But there are also a variety of websites that can be used to search for clinical trials if there are particular patients who are very interested in specific therapies, CAR T, bispecifics, or others that you can look around and try to find places that would be best for them. 

Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects

Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects from Patient Empowerment Network on Vimeo.

How are MPN symptoms and treatment side effect managed? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss the importance of clear communication with your healthcare team, the process for assessing common issues, and advice for advocating for yourself.

 

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Are There Predictors That an MPN May Be Progressing?

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Myeloproliferative Neoplasm News and Research Updates

How Molecular Markers Affect MPN Treatment | Advances in Research

How Molecular Markers Affect MPN Treatment | Advances in Research


Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! I’ve been living with a condition called myelofibrosis for many years. While there have certainly been ups and downs, I’ve been able to navigate care for my condition and to live a full life.  

So how have I been able to do that? First and foremost, I have a great relationship with my care team, whom I communicate with regularly. Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist and a specialist in myeloproliferative neoplasms or MPNs. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF.  This group of blood cancers is characterized by the bone marrow overproducing a certain type of cell.  

Maintaining a good relationship with your healthcare team, coupled with finding a treatment approach that works for you, can help you live a full life and to thrive with an MPN. 

Brian: 

Exactly, Dr. Liu. Over the years, I’ve experienced periodic issues with my condition. I’ve had symptoms and treatment side effects that have been bothersome and interfered with my life. But, communication with my team has been essential to feeling well.  

Dr. Liu: 

That’s right, Brian. When symptoms or treatment side effects are bothering you, it’s important to let your healthcare provide know how you are feeling. 

Brian: 

For example, recently I felt tired beyond general sleepiness. And when I shared this with Dr. Liu, we discussed potential causes of the fatigue, and we talked in-depth about my options to manage it, including changing therapy and some simple changes to my diet and lifestyle.1 Over time, my energy levels improved, but having the open dialogue with Dr. Liu was essential to tackling this symptom head-on. 

Dr. Liu: 

That’s a great example. When I first hear from a patient that they are having an issue, we go through several steps to find a solution.2  

We start by ensuring that the disease is well-controlled, so we check blood counts. Next, we try to determine if it is a symptom of the MPN or a side effect of the treatment. Once we’ve done those steps, we come up with potential solutions which may include, but are not limited to: 

  • A dose reduction or a treatment holiday. 
  • Changing therapy to find something that is more well-tolerated. 

Other considerations are dependent upon the specific symptoms and side effects but may include: 

  • Supportive care options, including diet and exercise. 
  • A visit to your primary care doctor to see if there is something else going on physically. 

Brian: 

That’s good to know, Dr. Liu. Something you brought up with me, which I feel is important to mention, is mental health. Often, emotional symptoms can take a toll on the body, causing fatigue or other issues. 

Dr. Liu: 

Great point, Brian. Seeking care for your mental health is crucial, particularly if you are in active treatment. 

Brian: 

Of course, we know that the symptoms and treatment side effects for MPNs can vary widely, so what advice do you have for patients who may be afraid to speak up? 

Dr. Liu: 

The most important thing to remember is that we have options to help you, no matter what you are going through. It’s your body and if you don’t let your provider know what you’re going through, they can’t help you. 

Brian: 

So true. It’s also a good idea to bring a care partner along to appointments, sometimes a spouse or friend can you help you communicate what’s going on. 

Dr. Liu: 

That’s great advice, Brian. Bringing someone along to take notes is a great idea. Also, be sure to write down any questions or concerns you have in advance to make the most of your appointment. 

Brian: 

OK, Dr. Liu, let’s recap your advice for MPN symptom management: 

Dr. Liu: 

Good idea! First, remember that everyone’s MPN is different, so managing symptoms and side effects can be tricky. Communicating with your healthcare team is critical to your overall care – report any and all concerns to your team immediately. 

And, do your part. Make sure you see your primary care physician regularly and do your best to maintain a healthy lifestyle. 

Brian 

And, most importantly, remember you are at the center of your care. Never hesitate to share your opinion and to advocate for yourself. 

To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us! 

Insist on Better Lung Cancer Care | Tips for Essential Communication

Insist on Better Lung Cancer Care | Tips for Essential Communication from Patient Empowerment Network on Vimeo.

How can you advocate for the best lung cancer care? Lung cancer specialist Dr. Isabel Preeshagul provides an overview of lung cancer healthcare team members, reviews how treatment goals are determined, and shares advice for communication with your care team.

Dr. Isabel Preeshagul is a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Preeshagul.

See More From INSIST! Lung Cancer

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Understanding Currently Available Non-Small Cell Lung Cancer Treatments


Transcript:

Katherine Banwell:

I’d like to start with a question pertaining to our series title, Insist. Why is it essential for patients to collaborate with their providers on care treatment decisions?  

Dr. Isabel Preeshagul:

So, collaborating is so important, right? I always tell my patients this is not a dictatorship, right? This is a collaborative effort where I’m here to guide you, but you are the captain of the ship. 

You are the one that needs to make all of the decisions, and I’m here to make sure that the ship goes in a smooth direction, so making sure we have open lines of communication that the patients and their caregivers feel comfortable talking to me and my team and also vice versa and that we trust each other. It’s so important because we are going for a marathon, right? We’re not going for a sprint. This is a long-term relationship, whether we’re treating for cure or we’re treating you with palliative intent and it’s treatable but not curable. We’re going to be following with each other for a long time.  

Katherine Banwell:

A lung cancer healthcare team, of course, consists of a number of different providers. Would you tell us about the various members on a team? 

Dr. Isabel Preeshagul:

Sure. So, there is – there are the people that do the scheduling, that make sure that the CAT scan is scheduled, that the MRI is done, your chemo gets scheduled, all of that. The schedulers are super important and an integral part of our team.  

And then we also have our office coordinators that answers the phone calls and passes along the messages and assists with scheduling and sort of sets expectations and is the face of the practice. Then you have an office practice nurse or an oncology practice nurse who is the doctor’s right hand, making sure that the patients get proper chemotherapy teaches, making sure that they understand about possible side effects, risks versus benefits, making sure medications are up to date, assessing symptoms.  

They are sort of the front line when it comes to any patient call they’re triaging, and they’re escalating or deescalating. That would be the office practice nurse. And then you have an advanced care practitioner, an APP. You either have a nurse practitioner or a PA that’s working with you that’s sometimes seeing patients independently, sometimes putting chemotherapy orders, you know, really serving as almost as another doctor. 

If for some reason there is something that the doctor’s not available to do, the doctor needs in a pinch, or my patients that are almost at long-term follow-up that are doing great that are just kind of coasting, I will share with my NP and make sure that they know her just as well as they know me. And sometimes there’s a fellow, or there’s a resident or there’s a med student that’s part of the team as well because see one, do one, teach one. It’s really important to teach those that are coming after you and serve as mentors and really include them in part of the team and part of the decision-making. And then you have the doctor that just kind of oversees everything.  

Katherine Banwell:

Of course. How would you define treatment goals for people with lung cancer? 

Dr. Isabel Preeshagul:

So, the goal of treatment, I think, is really contingent upon someone’s stage, but it’s also contingent upon what’s important to the patient, right? So, we have patients that are stage I all the way to stage IIIC that we treat with intention to cure.  

And patients that have stage IV disease, it’s treatable but not curable. So, I am very transparent with that as long as I have the information to have that discussion. With that being said, there are some patients with stage III disease or stage I disease that don’t really want treatment and want to focus on quality of life. And that’s okay too. And in which case, you know, at some point, their cancer will likely progress. How quickly or when that will happen, we don’t know. Could they pass from something else? It’s possible. But you really need to talk about what’s important to the patient, because it’s not always cut and dry.   

Katherine Banwell:

As you mentioned, Dr. Preeshagul, there are several different support members on a team. What would you say to patients or even care partners who can sometimes feel like they’re bothering their healthcare team with their questions and comments? 

Dr. Isabel Preeshagul:

So, we do get that concern a lot. And I always say, “I’m here for you 24/7. And, if it’s not me, it’s someone that’s just as qualified to answer your questions no matter what.” 

“And I would rather get a phone call at 3:00 a.m. than get a phone call at 9:00 a.m., and you need to go to the hospital right now or God forbid something happened. I get a phone call from someone in the ICU that you went overnight and terrible things happened. So, I want the phone calls to come through to keep you out of the hospital and keep you from going south. So, call me.” And I never try to – I don’t try to outline contingency plans or criteria of what would warrant a call, because then you end up getting in trouble.  

I always just tell my patient, “Think about how you’re feeling now in front of me. If you’re feeling any different than how you feel at this very moment, call me.”  

Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key from Patient Empowerment Network on Vimeo.

Dr. Lin is a medical oncologist who helps small cell lung cancer (SCLC) patients as a member of the healthcare team. Dr. Lin explains the urgency of care decisions with extensive stage SCLC and advice to patients and loved ones. “This is where communication between the patient and healthcare team is key to an optimal cancer journey.” She discusses common members of the SCLC healthcare team and advice for staying [ACT]IVATED for the best care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

Lessons From a Small Cell Lung Cancer Care Partner


Transcript:

Staying ACTIVATED in cancer care is essential to becoming informed, empowered, and engaged in patient care, but what does that really look like? As a medical oncologist caring for patients facing a small cell lung cancer (SCLC) diagnosis, how can I best coordinate with my patients and families in the shared decision-making process?

Extensive stage small cell lung cancer (ES-SCLC) is an aggressive cancer, so swift decisions may be necessary. This is where communication between the patient and healthcare team is vital to an optimal cancer journey. Your healthcare team may include a medical oncologist like myself, pulmonologist, radiation oncologist, thoracic surgeon, nurse practitioners, a patient navigator, and many more key players on your journey. 

Given the aggressive nature of this cancer, educating yourself as the patient and patient’s loved ones helps empower involvement in the shared decision-making process for small cell lung cancer treatment and care. Asking lots of questions about benefits and risks of treatment, testing, what to expect for treatment, and support services is an important part of the patient empowerment path. 

Stay [ACT]IVATED with these tips:

  • Ask about the stage of your cancer, treatment options, treatment goals, possible side effects, support services, and what to expect during and after treatment.
  • Inquire about how often you’ll see your pulmonologist as part of your care, whether there are any clinical trial options, or who to contact if you experience any type of lung discomfort or breathing issues.
  • Find out what to expect for your treatment, the frequency, duration, side effects, and whether you might need help going to and from the treatment location.

If you’re helping a loved one in their fight against small cell lung cancer, shared decision-making is critical. Stay [ACT]IVATED by being informed, empowered, and engaged in their care. It can make all the difference.


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AML Treatment Decisions | Understanding Factors That Impact Your Options

AML Treatment Decisions | Understanding Factors That Impact Your Options from Patient Empowerment Network on Vimeo.

An acute myeloid leukemia (AML) diagnosis can be different for each individual patient, so how is a treatment approach determined? AML specialist Dr. Jacqueline Garcia provides an overview of factors taken into consideration when choosing therapy, including age, overall health, and the patient’s preference. 

Dr. Jacqueline Garcia is an oncologist and AML researcher at the Dana-Farber Cancer Institute. Learn more about Dr. Garcia.

See More from Thrive AML

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Understanding AML Treatment Categories


Transcript:

Katherine Banwell:

With all the treatment options available, how do you decide who gets what? Tell us what is considered when choosing treatment for a patient. 

Dr. Jacqueline Garcia:

When I – this is a complicated question, because it’s not like you follow any particular algorithm. But when I meet a patient, I make a decision on what’s important to the patient and what’s  their goal. If I know – I need to understand their overall health to get a sense of are there ongoing competing risk factors that are active and more likely to impede with response, ability to deliver chemo, ability to get to transplant, something that tells me that’s not a possibility, or is their age too advanced – meaning greater than 75 – where we know that some of the treatments are not safe to deliver in that setting?   

So, I take a look at a patient’s overall health and age to make a decision. I take a look at bone marrow biopsy and lab findings to understand the flavor of their leukemia, from chromosomes to mutations. And because I am familiar with the data to give me a sense of what’s safe, what’s tolerable, and importantly what types of diseases, or subtypes of AML, would respond to one therapy over another, that’s how I formulate a recommendation.  

And based on all of that, all together, I’ll talk to them about treating the AML in steps. The first step is getting them into a remission, which can be done regardless of therapy type. That means to get their bone marrow under control, blood counts to recover. The second step, which is a more involved conversation that I often give a little bit of a hint of, but I go into greater detail over time, because we will see each other quite a lot, whether in the hospital or in clinic, is how to keep them in remission.  

And that’s where details about things like transplant come into play. I do my best to not overwhelm them, because when a patient hears the word transplant – and that’s often what they hear from family and friends because that’s what you can Google – they don’t know that there are many things, or many weeks of therapy, that have to happen in advance of transplant even being considered or happening. And transplant can’t even happen until someone’s in remission.  

But that is always on the forefront of a leukemia doctor’s mind, “Can I bring this patient to a transplantation? How successful will I be and what else do I need to give them to get them there sooner, safer, with a deeper response?” So, that way transplant could be successful. Transplant, by the way, is when we give a patient someone else’s stem cells that match their HLA typing, or their white blood cell signature.  

And it helps us to use someone else’s immune system to completely irradicate any microscopic leftover leukemia in a patient. But that is only successful when patients have good disease control or remissions. And that is only also successful if we have a donor for the patient, both of which  require at least several weeks to a couple of months of therapy. But that process is always initiated and ongoing in the background. And so, we often do this in piecemeal, because getting a diagnosis is already overwhelming. Learning about treatment is overwhelming.  

Learning about the frequency of labs, transfusions, being hospitalized, and then details about what a transplant would entail can be also overwhelming. But a lot of family and friends like to ask, because they feel like that is one way they might be able to help a patient. So, I know that they often eagerly ask the patient, “Well, what about this? How can I help?”  

Katherine Banwell:

Right. I can imagine that patient preference is also considered. But what kind of questions should patients ask about their treatment regimen?  

Dr. Jacqueline Garcia:

I always tell patients that I care very much about things like travel, hotels, all that jazz. But I always tell them let’s first talk about their health, what treatment I would recommend based on the available options and what their disease would mostly respond to, because I want it to be successful. And I always tell them let’s reserve questions on how it’s going to be done for last. I call that the logistics. I will never bring up or recommend something that could never be possible. But that being said, I try not to let the commute determine the decision.  

Whether or not there needs to be a hospitalization versus a hotel stay. I always consider then the background, but that financial decision should not drive the best treatment choice for a patient. Very fortunately, we’re in a country where patients have the ability – often, not always – to seek second opinions or to travel to academic centers.  

And because AML is an emergent or life-threatening disease, many insurance providers allow patients to come up to a big center to be treated, which I think is more than appropriate. So, we get into details of logistics last, because that’s the one thing that we can often overcome by providing additional resources and support. In terms of patient preference, if that’s what you mean with that, I would say I leave logistics to last, but we always consider and we do our best to accommodate.  

And that might be where we inform them we will look into getting a local partner to help us with additional therapies after the first month or upon discharge. So, it totally depends on the scenario for a patient, whether or not they have a local provider and a local hospital that could accommodate acute leukemia. I always tell patients ideally you don’t want to go to a place that only sees this once per year. You want to go to a place where everyone has seen it multiple times, including the nurses on the floors.  

So, that way, when there’s a complication, everyone knows what to do. We don’t want any “surprises” when it’s really just run-of-the-mill standard stuff for us every day. In terms of what patients desire, we always keep that in the conversation of their level of support. Can they swallow pills? Are they able to cope with being in and out of the hospital? All that stuff gets considered, but I think if they hear about the plan, about what’s required, when my expectation would be for a response, when the frequency of trips to a big city would decrease, how I could get a local partner to help with some of the lab or transfusion burden.  

Many of those preferences that they thought they had diminished, because they recognize that we found a way to make it work.  

Katherine Banwell:

Dr. Garcia, you mentioned earlier the fact that some therapies can cause a lot of side effects, like nausea. And certainly, speaking up and telling your healthcare team how you’re feeling and what some of the symptoms and side effects are, that’s really essential. What is the impetus for someone to consider changing treatment if something is just absolutely not agreeing with them?  

Dr. Jacqueline Garcia:

So, there are many reasons to change a treatment. One is a patient doesn’t tolerate it. It depends on what the issue is. Is it something that’s serious, like a liver or enzyme abnormality that is very abnormal, or a new cardiac problem where it would warrant a change or a dose reduction? That makes sense. There is definitely – often, there’s a lot of guidance in the package inserts or within a clinical trial and how to manage that. But if patient has some intolerabilities that could be overcome with standard supportive care methods, I would make sure we’ve done that.   

So, I would make sure you give you medical team the chance to fix any nausea. We have so many great antinausea drugs. I would want to make sure – or if constipation or diarrhea. It’s often a GI issue that patients get really bothered by.  

I would try to delineate whether or not the side effect was really from the chemo or is from the leukemia that is not yet under control. Or is it another medical condition or a drug-drug interaction that was missed. So, I would do my best to make sure there wasn’t something that was fixable or something else that should be addressed. We otherwise would recommend changing therapy for an extreme intolerability if there was another equivalent better option. And if someone’s disease does not respond to treatment, then we would consider another therapy, too.  

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What Questions Should Breast Cancer Patients Ask About Their Treatment Options?

What Questions Should Breast Cancer Patients Ask About Their Treatment
Options?
from Patient Empowerment Network on Vimeo.

What do breast cancer patients need to know about treatment options? Expert Dr. Bhuvaneswari Ramaswamy shares key questions that patients should ask their team about potential treatment approaches.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

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Transcript:

Katherine:

What questions should patients ask about their treatment options?

Dr. Waks:

I think the most important thing is to understand what you have first. So, kind of the doctor will talk to you about what type, histological type of breast cancer you have. They’ll also talk to you about what  biomarkers you have. And they will also talk to you  about the treatment options, which could be   chemotherapy versus target therapies, and what are the outcomes from those using clinical trials. So, I think the questions that you have to ask them is that,  what do you feel like you would is right for your body, right? That’s important. That what you have some of the preconceived notions that we all carry. That bias and preconceived notions is just a normal natural way of learning. And so ask about those fears, ask about those hopes that you have. And if your hope is, “Hey, can I do as well without chemotherapy?” Ask that question. So, and it’s important to understand the side effects and the outcomes of each therapy.

It may also be important for you if you do – you really don’t want to have treatments to understand if   you don’t get treatment, what are your outcome changes? So, those are, I think, the important thing. And then what that does mean to you? What do you want out of your life? Longevity, quality of life? How long will your quality of life be affected? And how does that impact your understanding of what you want out of your life? I think those are important for you to ask and make sure you have a friend or a relative with you so that not everything is going to go in at the first or the second visit, so you have someone else who’s taking notes.

Thriving With an MPN | Advice for Setting Goals and Making Treatment Decisions

Thriving With an MPN | Advice for Setting Goals and Making Treatment Decisions from Patient Empowerment Network on Vimeo.

Dr. Raajit Rampal shares his perspective on what it means to thrive with an MPN. Dr. Rampal goes on to discuss the factors that impact therapy as well as advice for setting treatment goals for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).

Dr. Raajit Rampal is a hematologist-oncologist specializing in the treatment of myeloproliferative neoplasms (MPNs) and leukemia at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Rampal.

 

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Understanding and Managing Common MPN Symptoms and Side Effects


Transcript:

Katherine Banwell:

In your experience, what do you think it means to thrive with an MPN? 

Dr. Raajit Rampal:

It’s a great question, right. I think taking a step back, when we think about our patients with MPNs, one of the questions I always have for patients are what are your goals? And inevitably and invariably, people want two things. They want to live longer and they want to live better. And so, I think that thinking about thriving with an MPN to me is about how do we minimize the impact of an MPN in someone’s life. And that means a couple of things. One that means how do we deal with symptoms or things that are causing medical problems. 

But two, how do we deal with the anxiety of a diagnosis? In many cases in my experience, that can be just as detrimental to somebody’s well-being as the actual physical symptoms of the disease.  

Katherine Banwell:

When it comes to choosing therapy for polycythemia vera essential thrombocythemia, or myelofibrosis, it’s important to work with your healthcare team to identify what is going to work best for you. So, to begin, would you define shared decision-making and why is this critical to properly managing life with an MPN? 

Dr. Raajit Rampal:

Yeah. Shared decision-making, to me, is really about the physician or whoever is on the healthcare team providing the patient all of the information needed to make a good decision. That means what are we trying to do? What is the medication or invention going to accomplish? What are the side effects because there are always side effects.  

And what do we think that’s going to do or how is that going to impact the patient’s life? Where things get nuanced is that patients come to us because we have expertise. There are two extremes. One extreme is that the physician says this is the medication you should take. End of discussion. The other extreme though is also not helpful, which is to say to a patient here are five choices. Here are the side effects. You pick one. Our job is to lay out those side effects and the benefits but then, also help guide a decision.  

Katherine Banwell:

What are treatment goals, and how are they determined? 

Dr. Raajit Rampal:

It depends on the disease to a large extent. Now, when we’re dealing with ET and PV, the primary goal of our interventions is to reduce the risk of a clotting event or bleeding event. And that usually involves controlling the blood counts in some cases, not in all patients with ET. 

Sometimes aspirin is all we do. Myelofibrosis is a little bit more complicated because it depends on what the problem is. Not all myelofibrosis patients have the same challenges. Some have anemia that needs treatment. Some have a big spleen. Some have symptoms and some have nothing and they just need observation. So, it’s a bigger list with MF patients. But I think the first part of the discussion always is defining what the goal needs to be. 

Katherine Banwell:

What factors are considered when choosing therapy for ET, PV, and MF? 

Dr. Raajit Rampal:

I think a couple of things. One is what medication we think is going to benefit the patient best. That has to take into account the individual, their willingness to take certain medications, for example, pills versus interferon injection. Some people have an aversion to self-injection, which we have to take that into account. What are the other medical conditions that the patient is dealing with? 

And the reality is, in some cases, it’s cost because these medications, depending on a patient’s insurance, can have quite a different spread in terms of cost. Unfortunately, that is something we have to take into account.