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HCP Roundtable: Optimizing Shared Decision-Making and Communication in Small Cell Lung Cancer Care

How can healthcare providers cultivate meaningful communication and support shared decision-making in small cell lung cancer (SCLC) care? Dr. Jacob Sands, Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School, joins Nurse Practitioner Stephanie McDonald of Dana-Farber to discuss practical strategies for strengthening patient-provider relationships, fostering collaboration, and advancing patient-centered care to improve outcomes for those living with SCLC. 

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc, and the host for today’s program. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers.

Today, we are discussing optimizing shared decision-making and communication in small cell lung cancer care. We’re going to discuss how healthcare providers can foster shared decision-making and improve physician patient communication in the management of small cell lung cancer, as well as strategies that healthcare providers can implement to enhance patient-centric care and drive better outcomes in SCLC treatment. 

It is my privilege to be joined today by Dr. Jacob Sands of Dana-Farber Institute. Dr. Sands is the Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and an Assistant professor of medicine at Harvard Medical School. Dr. Sands conducts clinical trials with novel treatment options with a particular focus on small cell lung cancer and antibody drug conjugates. Thank you so much for joining today’s EPEP program. Dr. Sands.

Dr. Jacob Sands:

Thank you so much for having me happy to be here.

Dr. Nicole Rochester:

It is also my pleasure to be joined by Ms. Stephanie McDonald, a nurse practitioner in the thoracic oncology program at Dana-Farber Cancer Institute in Boston, Massachusetts. Ms. McDonald’s clinical interests include targeted therapy for lung cancer, immune checkpoint inhibitor toxicity management and streamlining chemotherapy, education for patients and families, providing an individualized plan for support, guidance, and education to prepare patients and families for their cancer journey. Thank you so much for joining me today, Ms. McDonald.

Stephanie McDonald:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So let’s start our discussion today by looking at the obstacles that surround provider-patient communication and shared decision-making in small cell lung cancer care. Let’s start with some facts that might help frame our discussion. And I’m going to start with you, Dr. Sands. There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that. I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it.

Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on. So I encourage it. I directly answer everything that I can.

Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigaretteor any kind of smoking essentiallyincreases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent. I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt.

And hey, we’re starting from here. Let’s take this going forward. Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to process and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. 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, and 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.

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. Well, we’re going to shift to practical tools and resources to empower patients and enhance long term outcomes in small cell lung cancer. As you both have discussed, there are some challenges with survival outcomes, particularly for extensive stage small cell lung cancer. Dr. Sands, I’m going to start with you. What are the most significant advances in the current treatment landscape for small cell lung cancer? Five years. And how are they impacting patient outcomes?

Dr. Jacob Sands:

Well, thankfully, you know, there’s a lot to talk about in this space, especially if we’re including current clinical trials, because there are a lot of drugs in development that have shown really exciting results. But aside from that, I’m going to stretch a little more than five years, because it’s so meaningful. Is the immunotherapy drugs that are now part of our first-line treatment. These are drugs that, unfortunately, probably work well for maybe 20 percent of individuals. But amongst those in whom these work, they can work amazingly well. We have patients that are more than five years out from their initial diagnosis with widespread small cell lung cancer that have never gotten another treatment. They got chemotherapy and immunotherapy and that’s it.

They’ve not yet had another treatment. Their disease is controlled. Now this is an, unfortunately, smaller subset of patients that this is working like this for. But I mean, I’m stretching to say that we might actually be curing some people of their incurable disease with the incorporation of these immunotherapy drugs. So first-line setting chemo plus immunotherapy has been the standard of care. Now more recently we’ve seen the ADRIATIC trial. This was a trial in limited stage after chemo-radiation that now uses durvalumab (Imfinzi), one of those immunotherapy drugs after chemo-immuno it actually had a pretty impressive impact on survival on the time to the disease occurring as well as overall survival of patients made a really quite a big difference.

So that’s now the standard of care after chemo radiation for limited stage to then get immunotherapy for two years. But five years ago, also saw lurbinectedin (Zepzelca). This is another chemo agent, got a publication from that study that led to approval. This was 105 patient cohort within a basket trial. So single arm. That led to FDA approval of a new drug for small cell lung cancer. Lurbinectedin is a once every three week drug. It’s pretty well-tolerated. I think as far as chemotherapy drugs work, it does not have a lot of the toxicities that people worry about.

There are some things to monitor, but generally it is a manageable side effect profile as a new drug. More recently, we have tarlatamab (Imdelltra). This has made big headlines and it was a trial that enrolled in the third line and beyond. But the data was so good it got approved in the second line. So, you know, I often quote that about half of patients that get the drug benefit from the drug. It’s 40 percent that have a response–response meaning that it shrank by more than 30 percent. And amongst those individuals, 43 percent of patients were still on the treatment at the time of the last data kit.

And that’s beyond a year of ongoing treatment and some quite a bit more. So we don’t yet know the ceiling as far as how long this drug can work for. When it’s working. I mentioned about half of patients benefiting, but the response rate being 40 percent. That’s because even with stable disease, meaning that it could have shrank by less than 30 percent or grown by less than 20 percent. But in that range we see disease control and some portion of that out beyond six months, which I think is meaningful in the third-line and beyond setting.

Now, of course, what patients want and what we want for them is for something to work for years, not just for months now, you know. But if something works for six months even, and then you have something else that works and then something else that works and something else, then you can string that out to a much longer timeframe. But it’s exciting to see potentially years of benefit from another immunotherapy drug. Now, with that being said, there’s a lot going on in clinical trials that’s quite exciting too. And I’d say one of the benefits at Dana-Farber as well as some of the other bigger academic centers is that we have multiple trials for small cell lung cancer.

One right now is CAR T. So this is essentially collecting the immune cells from patients. We send those off and process them so that they are trained essentially to recognize small cell lung cancer cells. And then we infuse those back into patients. So patients get their own cells back, but now are essentially trained to find small cell lung cancer cells and kill them. So the treatment is essentially training someone’s own immune system to do the work. And it’s exciting. We’ve enrolled patients on that now and to see that technology now coming into the space on top of multiple drugs, which we call targeted chemotherapy.

These are essentially chemo that is bound to an antibody, so that goes and finds a certain receptor on the surface of cells where it then pulls that compound into the cell. And so the chemotherapy is delivered into the cancer cells instead of just going everywhere. And that’s another whole class of technology that’s happening in clinical trials. Now, that’s a bit of scratching the surface as far as clinical trials. There are multiple other things that I could go into, but trials options, I think, are a really important consideration in the small cell space.

I’d say, at this point, especially if you combine what I just said about the past five years now with what’s going on in available clinical trials, there is more happening in the small cell space of novel, effective treatment options than the history of everything up to this point. And so it’s really exciting to see that as an option for patients and to see people do well for such extended periods of time.

Dr. Nicole Rochester:

Wow, that is extremely exciting. When you talked about curing an incurable disease, that’s when you really got my attention. So, Ms. McDonald, I want to go to you, because Dr. Sands just described some very exciting treatments with very promising results. And I can only imagine that this information, while great, is also overwhelming to patients when they’re presented with all of these options? So are there specific decision aids or tools that you use when you’re talking with patients and families to help them understand the risks and the benefits of the different treatment options as they’re making decisions?

Stephanie McDonald:

So, yes, there are a lot of different treatment options. And with that, you know, we need to be aware of the potential toxicity associated with the treatment that patients are getting, which don’t come without risks. Right. Most patients do pretty well on immunotherapy, but there definitely are toxicities, you know, as far as, like, colitis or pneumonitis and rashes. There are things that are going to be education points that need to be made with patients to know what to look out for depending on what treatment they’re getting.

So I think it is incredibly important not only to provide education sheets to patients to reinforce these discussions, but like I spoke to earlier, I have a separate visit with the patients to be able to spend at least an hour the first time they are given a treatment plan, to be able to feed through all of the potential side effects. And I don’t want to overwhelm patients because you could be a bad, you know, commercial going over every single side effect. But we do need to be realistic with patients about what to be on the lookout for, what might come up, when to call if something does occur.

So I think the most important thing is breaking it down for patients to really easy-to-understand information and you can really gauge. I prefer to see patients in-person or at least have a virtual encounter with them over like a telephone encounter, because you can really gauge how a person might be responding to what you’re teaching them.If someone’s a deer in headlights and they’re overwhelmed by the information that you’re sharing, you need to be able to stop, take a few steps back, and break it down to easy-to-understand information for not only them but for their family members.

I think it’s really important that we also care for the family member as well. IWhen you walk into the room, you’re not just taking care of the patient, you’re taking care of every single person that is in their life. Like they have supportive families who are coming to these appointments who are equally as overwhelmed, or maybe there’s a shift in their role. And now that maybe somebody was a primary caretaker, very active and matriarch, or a patriarch in the household, and now there’s a shift in a whole role and dynamic for how these patients are going forward along their journey.

So we need to be able to spend time to unpack all of that to really understand how we can best support these patients. So besides just education tools, which I think just help reinforce the information that we go over with them as far as breaking down what are the side effects of treatment, how often will you be coming into clinic? People want to know simple things like what do you dress comfortably to come into clinic? What does the infusion room look like? It’s things that maybe as providers we don’t take a moment, because it’s second nature up to us to know kind of the…what the logistics are to somebody’s day in an infusion center.

But this is brand new information for most patients, and that can be incredibly crippling and overwhelming. So on top of providing concrete information as far as what side effects to expect, I also want to be doing a real time evaluation about what their supports are, what their needs are, are they losing weight, are they coming in and need help right off the bat with a dietitian? Are we assessing for their nutritional needs? Are we assessing their psychological needs? Because we know that anxiety, depression, fear of the unknown are very common emotions as a part of a cancer diagnosis and especially one as significant as small cell lung cancer.

So we really want to be talking to patients about the resources that we can encourage them to tap into or think about and talk with their family if they think they would benefit from these. I think one referral that I think often goes later in offering to patients is referrals to palliative care. And I think I just want to make a quick point, and Dr. Sands can talk to it as well, is the importance of implementing palliative care along a patient’s journey early.

And there is data to support that when you implement palliative care services early, patients are living actually longer. Jennifer Temple put out a study probably several years ago, Jacob, you could probably quote me on the date of that. But it’s shown that patients are living longer with improved quality when resources such as palliative care are implemented earlier. And I think it’s very difficult for patients when they hear the word palliative care. They already have this notion in their head that they don’t understand actually what it is. I think a lot of patients think that it’s hospice. They think I’m dying, you, you’re sending me to hospice. There are no more treatment options.

But I implement palliative care as an understanding of supportive oncology. How can we support you to improve your quality of life from the get-go of when you come in and start your journey? And, I make these referrals early. I do it in a non-threatening way and just lay it out as an additional support to help improve their quality of life and really balance the treatment that we’re giving them with again improving their quality of life over the long term. So I do think that referrals to palliative care should be considered and implemented early in a patient’s course in treatment.

Dr. Nicole Rochester:

Dr. Sands?

Dr. Jacob Sands:

Yeah, I agree. Supportive oncology is such an important component, and they often can play a role in helping with controlling symptoms like pain. I mean, of course, I want to know about pain. Of course, we can manage pain as well and I’m happy to add that into office visits. I also find though that for patients sometimes having visits where they’re talking more about those symptoms and others where they’re talking more about the cancer, actually for some patients works better for them. I am happy to help manage pain and do other kinds of medications around symptom management.

So, you know, that can also happen within our clinic as well. But like I said, I think for some patients, it works better for them having these two different teams that they’re interacting with and kind of sharing their story a bit more. It also allows them to really share that story in the way that they want to talk about it. And sometimes those are two different ways that they want to talk about it. You know, also related to the whole shared decision-making and discussion of toxicity profile versus benefits and stuff, I think I’ve often heard patients come in, you know, I see a lot of second opinions and such.

And so they’ll come in and say, well, this doctor told me all of these horrible things that are going to happen with the treatment. And so why would I even want to do that? And, you know, this is…I never actually know what was said to somebody, right? Because people are telling me what they heard, and I’ve heard patients come back or, you know, they get admitted to the hospital and what they tell the inpatient team about my discussion with them. I’m like, oh, I would never say something like what you just said.

So again, patients are experiencing all of this in an emotional way, and I think we have to be attentive to that. So the way that I’ll often talk about this is not just a matter of it’s not. I want to highlight what it’s not first. It is not saying, oh, all of these terrible things could happen. Because that way, if it does, I told you that was a possibility. Okay, that’s not necessarily the transparency we’re going for. The transparency we’re going for is kind of the overall context. Like, hey, this is the overall risk. Yes, here are some things, but here’s the likelihood of those things.

And so what I’ll often do for patients is I’ll often use the analogy. I often talk in analogies. I think that makes it more accessible. For this one, I’ll commonly say, if I were to ask you what could happen on my drive home, then you’re probably going to say, oh, you might hit some traffic, but you’ll be fine. And if I say, well, what are all the things that could happen? Now, that becomes this long, scary list.

Now I often say off the bat, like, a drive home is nothing like having cancer. I’m not saying that these are comparable, but just talking about it in a way in this analogy, so we can give more context so when I talk about, oh, the risk of immunotherapy, okay, you can end up with type 1 diabetes. You can have inflammation and problems with your heart. Okay, these sound like really severe, scary things. The likelihood of this kind of a thing happening is like on the scale of a bad car accident. Yes, it can happen, but this shouldn’t drive your decision-making. That’s very different than just listing out all the different things that can happen.

And I really encourage other providers to talk with their patients in some kind of a way that provides that. We’ll say, okay, here’s the long list of all the things that can happen. More realistically, what I expect is this.

Dr. Nicole Rochester:

Yeah. Thank you for highlighting that. Thank you for highlighting that balanced approach. I love the analogy with the ride home. I think that’s great advice for providers. Both of you have spoken as we wrap up. You’ve talked about collaborative decision-making. You have clearly highlighted how you all collaborate at Dana-Farber Cancer Institute and the importance of having these multiple visits. What about other members of the care team? How do you utilize social workers or patient navigators or other members in fostering collaborative decision-making in small cell lung cancer care?

Dr. Jacob Sands:

Well, they’re instrumental. I mean, this really is a shared team approach. Ms. McDonald and I are at the core of that. But then around us, the social worker, really important. You know, rides can often be a real barrier to getting care. And so having a social worker involved in that, that’s one aspect that’s kind of a more obvious one. Even the emotional support as well, and logistics, drug availability and programs for assisted pay, all of these types of things.

We have whole teams that help with that. Nurse navigator is another core member, though. We meet weekly with an administrative support and administrative assistant and with a nurse navigator to go over any patients that are complex and say, okay, this is what’s going on. How can we assist them better? What’s coming up? The administrative assistant knowing, oh, this person’s going to get a scan next week, but then is coming in the next day, we need those results available. Sometimes the outside hospital hasn’t even read the scan yet. They don’t have a radiology report. But we’ll review it with our radiologist as well. Because we have that scan available now. We’ll often do scans the same day.

Patients will come in, they’ll get a scan and then they come right to clinic. And we will review the scan with our radiologist. But of course, radiology, thoracic surgery, radiation, oncology, you know, the whole multidisciplinary team is a part of that. But there are also all of these other supportive members of that team and these weekly meetings, Ms. McDonald really was at the heart of that process and saying, hey, you’ve had these complicated patients. Let’s pull together a team meeting.

That has been a gift. That’s been wonderful, because then weekly we go through this and then everything is organized, and it really reduces the number of other emails or things that could potentially slip through the cracks in the process.Now, on top of that, if you go to tarlatamab, which is an inpatient dosing, which we just don’t have that in small cell lung cancer up to this point as something that requires inpatient monitoring. And as McDonald has really been part of that core of then connecting across to the inpatient team as well, and to all the nurses to then make sure we’re all on the same page.

A colleague of ours, Dr. Rotow, who’s our clinical director, of course, was quite instrumental in the implementation of these things as well. Just to say it goes out beyond our team, specifically in the small cell space. But it’s really important to be connected in all of these ways that really helps provide patients with all the resources that are available to them as well.

Dr. Nicole Rochester:

Truly a team-based approach for sure. Well, it’s time to wrap up our roundtable. I have really enjoyed this conversation. I have learned a lot. And as we close, I wanted to get closing thoughts from each of you. So I’ll start with you, Ms. McDonald. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening, watching regarding how we can optimize shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I really just think the key to optimizing shared-decision making is empathy. I think we need to take the time to really truly understand what our patients’ needs are, what their values are, and their preferences so we can be able to help align the treatment plans and the care that we give with what their goals are. And we really want to make sure that patients and their families are feeling supported and they are playing an active role in this decision-making process because at the core of it, they are what I call the captain of the ship. 

Dr. Nicole Rochester:

Thank you so much, Ms. McDonald. And what about you, Dr. Sands? What’s your final takeaway message for the audience?

Dr. Jacob Sands:

Well, I go that and thinking about when you’re talking about side effect profiles and counseling patients is what the experience is for them and coming at it as if you’re talking to your own parents. But, you know, I can go more in depth in that, but maybe more so focus on everyone who’s listening. I mean, it is hard being a healthcare provider. There is more information coming out faster and faster, and this is wonderful for patients.

There’s also a whole new era of patients really being at the center of their care. And I hear older docs talk about how, oh, this is so much slower. You’re not taking care of as many patients in the hospital as I did. Like, okay, but back in the day, it was a whole different experience. And so I think current physicians and nurse practitioners and healthcare providers are under an immense amount of pressure that is increasing day by day, year by year, in a way that isn’t fully appreciated within the system. And so just to acknowledge for everyone who’s listening, who feels like you’ve been in a crunch, I know you have. And I think part of this is then how to navigate that.

How do you go into someone’s room and emotionally actually engage and be there with them in a tough space sometimes, you know, being challenged for stuff that you shouldn’t be challenged for? It’s just people are going through an emotional experience, and they sometimes even lash out. And then how do you engage with that? And then right after that, walk into someone else’s room and start fresh and don’t carry that? And a lot of this is personal practice too. It’s like, how do we kind of shed everything at the end of an experience and not carry that forward without building a wall that keeps us from being able to engage in that space? And I will tell you, I don’t have a great answer. There is not a magical answer to that.

And so if you are feeling challenges of that, I think that is totally valid, too, as we all work to. I think this is… It is personally a lot of work to work in this space, and we always talk about the patients and what to do and what you should do and all this stuff. But how do we care for ourselves in that process and learn to let go of these things and start afresh with each person? I guess the best I can offer is validation that I know that that’s a challenging thing. And I see that, and I appreciate that, too.

Dr. Nicole Rochester:

Well, thank you both so much. There’s so much that was shared today, and I think the overarching message regarding shared decision-making and patient care in this space that I heard from both of you is empathy and meeting patients and families where they are. And I love the aspect of humanization of both the patient and of the doctor and the provider. So I really want to thank you both for being here today and thank you for tuning into this Empowering Providers to Empower Patients Patient Empowerment Network program. I’m your host, Dr. Nicole Rochester. Thank you so much for watching.


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HCP Roundtable: Advancing Practice and Enhancing Myeloproliferative Neoplasm Care

In this EPEP program, Dr. Akriti Jain of Cleveland Clinic and Nurse Practitioner Kimberly Smith of Duke Health discuss overcoming practice barriers, navigating emerging challenges, and implementing strategies to close gaps in patient-centered myeloproliferative neoplasm (MPN) care.

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HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients or EPEP Program. My name is Dr. Nicole Rochester, Founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. 

In this healthcare provider roundtable, we are discussing advancing practice and enhancing myeloproliferative neoplasm care. How can we overcome current challenges to enhance the management and outcomes of myelofibrosis, polycythemia vera, and essential thrombocythemia? What innovative practices are transforming the management of myeloproliferative neoplasms to improve patient outcomes?

Our conversation will look at  gaps in the field and solutions to enhance patient-centric MPN care for improved patient outcomes. We’re going to discuss identifying practice barriers to patient-centered care, navigating emerging challenges and opportunities in management and effective strategies for closing gaps in MPN care. It is my privilege to be joined by Ms. Kimberly Smith of Duke Health. Ms. Smith is a nurse practitioner who provides security and compassion that patients and families need when they get a cancer diagnosis. Thank you so much for joining this EPEP program today, Ms. Smith.

Kim Smith:

Thanks for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

It is also my honor to be joined by Dr. Akriti Jain, a hematologist at Cleveland Clinic. Dr. Jain’s passion lies in understanding the needs of every patient and always prioritizing and advocating for her patients and their families. Thank you so much for joining the EPEP program, Dr. Jain.

Dr. Akriti Jain:

Thank you, Dr. Rochester. Happy to be here.

Dr. Nicole Rochester:

So I’d like to start off by talking about identifying and overcoming barriers to patient-centered care for patients and families facing a myeloproliferative neoplasm. So, Dr. Jain, I’m going to start with you. What are the most common barriers to implementing patient-centered care in the management of myeloproliferative neoplasms?

Dr. Akriti Jain:

Thank you for that question, Dr. Rochester. It’s very pertinent. As you can imagine, there can be a lot of barriers when we are trying to provide patient-centered care, especially in the management of myeloproliferative neoplasms. As you said, there are multiple myeloproliferative neoplasms, and each one of them is complex. And hence the complexity of each diagnosis, how they’re diagnosed, how their risk-stratified and how those patients are symptomatic based on whether their platelets are high or their hemoglobin is high, or they have scarring or fibrosis in their bone marrow.

Then that in itself becomes complex and can become a problem when we’re seeing these patients in the community. That’s why a lot of these patients get referrals to tertiary care centers, and not all patients can have that opportunity to go to tertiary care centers and see providers that are very knowledgeable and know what…exactly how to diagnose these myeloproliferative neoplasms.

Dr. Akriti Jain:

A lot of times it’s very team-based approach. It’s not just the clinician, but also the pathologist. So a lot of times when these patients come to us we have their bone marrow biopsies reviewed because the diagnostic criteria requires certain things in their bone marrow that helps us diagnose these problems. So not just that these MPN are variable, but also individual variability within the MPNs. So not every polycythemia vera patient presents the same way. So that becomes a problem again when providing patient-centered care, because it’s not the one-size-fits-all philosophy. Those are some of the things that I can think of.

Dr. Nicole Rochester:

Ms. Smith, I know that you share Dr. Jain’s passion with regard to really being compassionate with your patients. So I’d love to get your perspective as a nurse practitioner what are the primary barriers that you’ve witnessed to accessing effective patient-centered care?

Kimberly Smith:

I would say what I’ve experienced most is the patients actually understanding their disease process, the education piece, like making sure that educating them about their disease, giving them security that, hey, that you have a myeloproliferative neoplasm, but let’s look at it as we’re running a marathon, not a sprint. You know that we have time, you know that we can get family involved. And I think that’s a big thing with me, just try to bridge that barrier that it’s a team effort. It’s not just you. Even though treatment is individualized, it’s still a team. We are a team, so I want you to be comfortable, but I also want to be comfortable with giving you the information and that you are able to receive it. That’s one of the big barriers that I see is them being able to accept their diagnosis.

Dr. Nicole Rochester: 

Wonderful. Thank you so much Ms. Smith. So, Dr. Jain, I’m going to go back to you and staying on this theme of patient-centered care. Can you talk about some of the gaps in research regarding patient-centered care in MPNs, and how can those gaps be addressed?

Dr. Akriti Jain:

Sure. So building off of what Ms. Smith was just saying, education comes, it’s very important also for research. If our patients are educated on the potential options for trials, for retrospective research, for registry research, they are more open to accepting these options for their management, for their treatment. A lot of patients might not know which phase each trial is in, and a lot of patients don’t want to be, “guinea pigs.”

So sometimes it’s important for us to educate patients that some of these trials are Phase III trials and Phase III trials eventually lead to drug approval. So a lot of the drugs we have for myeloproliferative neoplasms were not available a few years ago. So education is very important here. And lack of education within patients and then also within healthcare providers can be a big gap in getting research to the patients where it is needed.

And we’re very thankful to these patients that help us advance research and help us get these drug approvals and enroll in trials. Other important gaps are including patient-reported outcomes. As we all might know within MPNs, we have a really nice MPN symptoms score MPN-SAF, a lot of newer research trials and other research avenues are including SAFs within the trials. And so these are important things that can help us give patients the prioritized and individualized care they need.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. Ms. Smith, do you have anything to add with regard to gaps in research regarding patient-centered MPN care?

Kimberly Smith:

Yes. I agree with Dr. Jain, but also another thing that I notice, with these gaps is a lot of patients come to us with other comorbidities, and so they might not qualify for trials or they might have another associated heme malignancy that they might not be able to qualify. So it kind of puts a gap in treatment, because then we have to go with what’s already FDA-approved, and that might not be the best option for the patient at that time.

Dr. Nicole Rochester: Thank you for pointing that out. So we’ve been talking about the barriers that patients face, and I want to shift gears a little bit and focus on the healthcare provider. So, Dr. Jain, I’m going to start with you. Can you speak to some of the obstacles or barriers that healthcare providers face when treating MPN patients?

Dr. Akriti Jain:

Sure. So being a healthcare provider and doing this, I can tell you all about the barriers we face. I think going back to that team-based care, sometimes it’s easier said than done. Like I said, we need pathology input. A lot of times we need psychology input. Other times, we need cardiology input. Some of these patients are getting blood clots, vascular medicine, so team-based care and coordination within those various physicians and nurse practitioners and social workers that can sometimes become cumbersome requires lots of phone calls.

And so in a lot of places, we try to put together these teams where you have kind of like a go-to person to call when you have questions or concerns. The other thing we always are all short on is time. So it’s easier to talk about these MPN symptom scores, but when there are 10 questions to ask these patients within those 15 to 30 minute appointments though that’s another barrier sometimes that we face as physicians and as healthcare providers.

The other important, one of the other important parts is management of some of the side effects of these newer therapies. Every patient reacts differently. Every patient has different side effects that they can have. And knowing those and being able to manage them while keeping them on these therapies, which don’t only improve symptoms, but can also sometimes improve survival and improve the natural history of the disease can be difficult to overcome and handle.

Dr. Nicole Rochester:

Thank you, Dr. Jain. And what about you, Ms. Smith? Can you speak to any additional barriers that healthcare providers face?

Kimberly Smith:

Unlike Dr. Jain was saying, but one of the barriers that I see that that we face a lot is advocacy groups are great, they’re wonderful, we need them. But a lot of patients look at those groups, and they lump themselves into that group. And so I try to tell patients you are an individual. You are individual. You need individualized care. It’s wonderful to look at the advocacy groups. It’s wonderful to follow, and you get some good information, but we also have to look at you as who you are and what we are treating and your symptoms, because your symptoms may not be the symptoms that they have.

Dr. Nicole Rochester:

A really good point. And since we’ve talked about these barriers, I’d love to wrap this part of the conversation up by giving solutions. So, Dr. Jain, you mentioned a couple, you talked about having this one number for all of the how healthcare providers to call, if there are questions to kind of help to coordinate care. Are there other solutions that you or Ms. Smith can offer to start to overcome some of these barriers in care?

Dr. Akriti Jain:

Sure, yeah. In addition to the multidisciplinary team that we were discussing and having, those people that we can talk to another barrier that I didn’t talk about is a lot of prior auths and having pharmacy support to get some of these medicines that can be really expensive, right? The financial toxicity that can come with some of the medicines that we manage myeloproliferative neoplasms with is hard. So having pharmacy support is again very important.

Having that specialty pharmacy that can help us navigate how to get these medicines to patients quickly and get them in an affordable manner, I think another important part that we always come back to is education. Education of those pharmacists, of patients, of other healthcare providers helping them stay on top of what new drug approvals come through, what Phase III trials are available in the community, what the side effects of these medicines are so that they are empowered to be able to help their patients out in the community and also in tertiary care centers.

Dr. Nicole Rochester:

Wonderful. Thank you both. Well, we’re going to move on. And in this section I want to talk about some of the challenges and opportunities. So I’m going to start with you on this one. Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?

Kimberly Smith:

Well, a lot of the world of MPNs is starting to explode, especially with myelofibrosis. We are getting all these different treatments, these trials running, things hopefully that we will have that could that could change the disease process in these patients. And one of the biggest challenges is, is that where do the patients fit at in this aspect of it? Are we going to be able to actually get patients approved for some of these things or will we have to go with the oldie, but goodie with a lot of these? We still use hydroxyurea (Hydrea) a lot in these MPNs. And so, but we have a lot of other drugs now that we can use.

But because we know that it’s tried and true, and it’s harder to get patients on some of these other drugs, we go with the oldie but goodie. So I think that’s a challenge that we…that we’ll have. And the other thing is too these drugs are expensive. So even if we can get the drug form at our institution or in the community, if we can get them for them, will they be able to afford them? And one thing I can say that I’ve noticed is a lot of the drug companies that we’ve dealt with here that they are really good about helping, is there anything that we can do to kind of help push the process to get patients assistance for these therapies? And so I think that’s one of the biggest challenges that we’ll have with treating them, just this explosion of new therapies coming.

Dr. Nicole Rochester:

And you kind of alluded to it when you spoke about hydroxyurea. So I’m going to pose this question to you, Dr. Jain, are there any unforeseen or outdated practice-related barriers or therapeutic inertia that may hinder your work in that of your colleagues?

Dr. Akriti Jain:

Yes, definitely. I echo Ms. Smith’s sentiments. I think a lot of times, things that we have already used for years and having familiarity with those treatments sometimes can lead to resistance to accepting new guidelines and treatments. And that can come from, again, not knowing the side effects that these treatments can pose, right? Not having long-term data that these drugs haven’t been, some of them are new, they haven’t been around for years, so we don’t know what they can cause in the future. And that can happen both from the healthcare provider standpoint and also from the patient standpoint. And it can be challenging. And what can help us overcome that is education.

Even though the drugs might not be approved, for example, the newest approval that came around last year was momelotinib (Ojjaara), which is a newer drug for myelofibrosis, can help treat anemia as well. After it was approved, we had patients ask us for that drug for months before we could actually prescribe it. Yes, because FDA approval and then actually being able to prescribe the drug take…it takes some time for these drugs to show up on formularies for pharmacies to start carrying them. And then going back to, even if the drug was approved last year, it doesn’t mean it’s a new drug. It’s being tested and it is being tested in trials for years now. So those are some of the things that I can think of.

Dr. Nicole Rochester:

Thank you both. So I want to talk about the Landmark study. This, as you all know, was a large scale analysis and survey of patients with myeloproliferative neoplasms as well as the healthcare providers who treat these rare chronic blood cancers. Ms. Smith, how do you feel that healthcare professionals can use the insights from the MPN Landmark study as an opportunity to improve how they communicate and interact with their patients?

Dr. Akriti Jain:

Sure, I think the most important thing that we can learn is understanding the patient perspectives and needs. It provides an in-depth analysis of what the patients get anxious about or what the patient’s symptoms are about. So if, for example, if the patients are anxious about side effects of treatment, we can be proactive in empowering our patients with that knowledge that these are the things that we need to look out for.

These are the things that you would call us for. And again, it gets us back to understanding the common challenges that our MPN patients face and then how we can help them with those challenges, those symptom management. If treatment adherence is a problem, how can we help them have a pill diary? Or if a burden is a problem, how can we help them reduce some of the medicines that they’re taking? I think it provided a really good understanding of what patients feel, how their perspectives are, and what things we can use to improve their management and provide more patient-centered care.

Dr. Nicole Rochester:

And what about you, Ms. Smith? What are your main takeaways from the Landmark study and how can healthcare providers use those results to improve the way they interact with patients?

Kimberly Smith:

My main takeaway was where the patients, where it showed on the study, where the patients were saying it was hard for them to get up out of the bed. So I’ve dealt with that with many patients. Fatigue is a true issue. And, I’ve had patients tell me they’ve golfed nine holes. I had no idea what that meant. But then they say I come in and I can only golf five holes.

I still had no idea what that meant. However, it was significant for them. And so, what I take from that study is we have to not only just ask patients, what are your symptoms? We have to actually question and dig to actually find out because what we may be looking at just off of the symptom score page, they may have something else that’s hindering their ADLs or hindering their, what they’ve done all the time in their life. And it’s changed now.

And so, I think the main thing we have to do is actually ask, educate, have them to write down symptoms, anything that happens new that happens to them, let’s write it down. Let’s go over it. Let’s talk about it. And then if it’s fatigue, we have ways we can help mitigate some of that. We collaborate with palliative care to help with symptom management. If it’s allergy symptoms, we collaborate with allergy. So there’s ways we can help you with your symptoms, but if we don’t know, we don’t know. So I think the education, I think talking to patients, like actually talking to them on their level is what that Landmark study kind of presented to all of us, healthcare providers, that what we may be looking at as symptoms may not be symptoms for the patient.

Dr. Nicole Rochester:

Absolutely. And that kind of circles back to, I think what you were talking about earlier, Dr. Jain, with regard to patient-reported outcomes. So I will say I was thrilled to see this study, and I wish that this is something that was done in all disease states. So thank you both for commenting on that. So in our final topic, we’re going to talk about strategies for closing the gaps in myeloproliferative neoplasm care. So I’m going to go to you first, Dr. Jain, can you describe the most effective strategies, including your own best practices that can address gaps in care for patients facing a myeloproliferative neoplasm?

Dr. Akriti Jain:

Yes. So again, coming back to empowering our patient and leading to that shared medical decision-making. So different patients present differently, not using that one-size-fits-all philosophy, depending on what their symptoms are, what their diagnosis is tailoring their treatment. If cytopenias or anemia is a problem, helping them battle that. And different hemoglobins can be different for different patients. So not discounting their symptoms, saying that your hemoglobin is 11, your hemoglobin’s fine, you don’t need any treatment for this right now, maybe they’re used to functioning at a 14.

So shared medical decision-making is very important, because if patients feel like they’re heard, if patients feel like they’re a part of the decision that their healthcare provider made in helping them decide what is best for them, I think that is really important. And it would lead to patients actually adhering to treatment, following up with their healthcare provider, and also better physician-patient relationship, which I think is very important in some of these chronic diseases, where these relationships last for years, right? This is one of the chronic diseases, like a lot of times we’re telling our patients, this is like high blood pressure or diabetes, we have to learn to live with it.

And so they have to be friends with their healthcare provider, otherwise they’re not going to come see you again. So I think empowering the patient, making them a part of this decision of how we’re going to treat them, how we’re going to monitor them, how often should we be doing their labs, is it feasible for them, I think are really important ways to close those gaps and help our patients.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. What about you, Ms. Smith, what thoughts do you have in terms of strategies to address the gaps in care for MPN patients?

Kimberly Smith:

I agree with Dr. Jain, but also bridging the gap between community and tertiary centers. A lot of times, we treat patients in these big centers, and then we send them out to local places to whether they need transfusions or, or to continue care because the distance for them to make it here is just too far. So I think, bridging, collaborating with the outside community hospitals and community centers, and also even the nursing staff, the nursing staff coordinating, just coordinating the care so these patients will know that they are receiving effective care, whether they are at this tertiary center or they’re at their community center, because we all are working as a team to make sure they have everything they need.

And also including the family. Families are important. That was a big thing to me. Like, I want to make sure families knew that they were a part of this team also, because a lot of times it’s the family who is having to deal with the symptom management. They’re the ones who want their family member to go somewhere with them, and they’re just too fatigued to get out, and they don’t understand it, because we’re telling them that this is a chronic disease. They should be able to do some things, but they just can’t. So I think we have to make sure we’re bridging the gap with the families also.

Dr. Nicole Rochester:

So for you, Dr. Jain, are there specific strategies or maybe one strategy that you have implemented yourself, maybe where you work, that has helped to bridge that gap between tertiary care and the community setting, as an example?

Dr. Akriti Jain:

Yeah, that’s a very good point brought up by Ms. Smith. So what I do, because a lot of the patients I see in my clinical practice are second opinions. A lot of these patients I see one time, and maybe I’ll never see them again, or maybe I’ll see them in two years from now when things have changed, and they have more questions, or their provider has more questions. So what I do is I make sure the patient has my contact number so that they can always reach out if things change.

I make sure they have that MyChart set up so that they can always message me if they need me. The next step that I always take is I call their primary oncologist. I make sure they have my cell phone number so that they can call me if things change, if they have any questions. And the third thing I always tell my patients is you can use me however you want to use me.

So, I, a lot of times, would set up virtual visits in three months or in six months. That way, even if they live hours away from us, they can see us the tertiary care center through the comfort of their home. They can get labs locally and see us. They can kind of alternate between their primary oncologist and a tertiary care center, or maybe see us once a year. It’s dependent on how much they feel makes them comfortable seeing us along with their primary oncologist who’s doing most of the heavy lifting, providing the care close to their homes.

Dr. Nicole Rochester:

And to circle back to the family part, I’m going to go back to you, Ms. Smith. Is there a strategy that you can share that you and your team implement to really engage with the family members of MPN patients?

Kimberly Smith:

Yes. So we provide educational materials to the patients. We always ask them to bring a family member with them. If they can’t bring a family member with them, I’m willing to call a family member if they need information after the visit. I always give them the contact numbers that the family member can contact me also. MyChart is a big thing. Make sure they have MyChart because the family reaches out via MyChart also.

Another thing that I do is that I try to make sure that the family also has like the educational material too, because sometimes you can give it to the patient, but they don’t share it. So if a family member comes, if I pass out information to the patient, I pass it out to the family member also. I also provide them with websites that they can use, that they can utilize. Like the Cleveland Clinic is one of them that I have them use a lot, but, but websites that they can use where they can actually look up information on these different MPNs that they may have. So I think the educational piece is the biggest thing that I do with my patients.

Dr. Nicole Rochester:

Excellent. Thank you both for that. We talked a little bit about the perception that patients have when we talked about the Landmark study a little earlier in this program. And Dr. Jain, I’m going to come to you. How did the gaps in perception or perhaps the disconnects between the patient perception and the physician or healthcare provider perception of the disease burden, how do those gaps impact overall management and treatment outcomes for MPN patients?

Dr. Akriti Jain:

Sure, Dr. Rochester. So the disconnect between the physician and patient can become really important and where that occurs is because a lot of times our low symptom burden, low-risk disease patients are being observed. And the physician might think that I don’t think this patient warrants treatment, but the perception that the patient has of their symptoms might actually be very different. And I think what comes really handy here again is that MPN symptoms score, when you ask patients to rate the symptoms from 0 to 10, but 10 being the worst, you can actually see where they lie on the spectrum.

And I do these symptoms scores on every visit, because especially if I’m starting them on treatment, it really helps to know in an objective manner that what was the number that our patient rated fatigue on at their last appointment and what that number is now. And it’s not just fatigue, but all those 10 points and then symptom score, how are their night sweats, how is their itching, are they still having problems concentrating, have they lost weight?

So all these questions with a number attached to them, and it’s very surprising. You’ll see patients put in a zero for all these numbers and suddenly after three months, those numbers change. And so that really helps to know where the patient lies and so that we can close the gap between what the patient is perceiving about their symptoms versus what their provider is.

Dr. Nicole Rochester:

Ms. Smith, what would you like to add?

Kimberly Smith:

Yeah, I agree with that. I agree with that because using that symptom score, one of the questions is early satiety and losing weight. And that’s a big thing for these patients because they can end up with spleen enlargement. And so one of the main things that I kind of hone in on is, I want you to chart your symptoms. I don’t care what it is, Chart your symptoms. Even if it seems small to you, chart it. Because once you start them on drug, these things can change. And I just speak from one, just remembering one patient that I had who had an enlarged spleen and her main thing was, I want to eat. I just want to eat a burger and a full burger. And I haven’t been able to do that.

And we started her on treatment. And within three months, her main thing was, Kim, I was able to eat a burger and I ate the whole thing. So even though we probably can’t see on scans that it’s smaller, she could tell something was different. And that just made her happy to be able to do that. And so I tell them to chart everything. It doesn’t matter what it is, how mediocre you may think it is or minuscule you may think it is. It’s important because if things change over time, we need to be able to manage it.

Dr. Nicole Rochester:

Absolutely. Thank you. Well, this has been awesome. I have learned a lot as always. It is time to wrap up our roundtable. And I’d like to get closing thoughts from each of you. So, Dr. Jain, what is the most important takeaway message you want to leave with the healthcare professionals who will be listening to this program?

Dr. Akriti Jain:

Yeah, thank you, Dr. Rochester. I thoroughly enjoyed our conversation as well. I think the most important part of all of this is empower your patients. Tell them what they are suffering from. Tell them this is a chronic disease. Tell them you’re there for them. Use the resources we have the MPN symptom score. Use the medications we have if the patients meet those criteria, if they’re having symptoms. Sometimes it’s important to get down to the patient’s level and get to the point where they or get down to the patient’s level and feel what they’re feeling, rate their fatigue, and give them the help they need.

Dr. Nicole Rochester: 

Thank you, Dr. Jain. And Ms. Smith, what is the most important takeaway message that you would like to leave with our healthcare professional audience?

Kimberly Smith:

Thank you. I truly appreciated this and I loved it. This was awesome. But I just want to leave that, listen to your patients. They know their bodies. They know themselves. Listen to their family. They’ve dealt with them all their lives. They know when something is different. So just listen to them. Listen to them. Be receptive. And that way we can work as a team to make sure our patients get the best care that they need.

Dr. Nicole Rochester:

Well, thank you both. Just to echo what Dr. Jain and Ms. Smith have said, the most important takeaways are really involving our patients and their families, empowering our patients and families, educating our patients and families, and also valuing this multidisciplinary, interdisciplinary team. So thank you both so much again for being here and being part of this important conversation. And thanks to all of you for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. Again, I’m Dr. Nicole Rochester. Thank you for watching.


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Myelofibrosis Care | Impact of Diet & Lifestyle Modifications

Can diet and lifestyle help manage myelofibrosis symptoms? Dr. Pemmaraju explains how the Mediterranean diet and practices like yoga may improve quality of life for patients. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program and Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju.

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Advice for Shared Decision-Making | Myelofibrosis Care and Treatment Goals

Advice for Shared Decision-Making | Myelofibrosis Care and Treatment Goals

Transcript:

Katherine Banwell:

“Can diet play a role in either manifesting the disease and or helping with healing? Also, how important is exercise to the healing?”  

Dr. Naveen Pemmaraju:

I give a lot of credit to this area, to my colleagues, Ruben Mesa, Dr. Angela Fleischman, and Dr. Robyn Scherber. A lot of data that’s come out of these groups, which has shown two major findings in our MPN patients of potential clinical significance. One is as the questioner is asking about diet. It is true that we’re, several studies are pointing towards the anti-inflammatory Mediterranean diet as a potential benefit to our patients with MPN. Lots of different ideas there when they measure cytokines. 

These abnormal protein signatures that are in MPN patients can cause fatigue and some of the bad quality of life can be dramatically improved in some cases by following a strict Mediterranean diet over weeks and months. So, that’s something important. People should check it out. Obviously, diets have to be addressed with each patient and each provider because sometimes a diet may work for someone and not for you because of comorbidities, vitamin deficiencies, electrolytes, etc.  

Then the second aspect, if I may include in this question, is also the concept of yoga/meditation. Dr. Ruben Mesa and others have shown, the same thing, that you can have a potential downregulation of some of these abnormal cytokines. However, the caveat is it must be done right with a guided trainer in a real program over a certain period of time. What I think both of these non-pharmacological interventions tell us is that there are things beyond medicines and pills that may really help our patients in some aspect of the disease.  

Well, if that aspect is fatigue, night sweats, headaches, I think that’s a really important thing. So, let’s say together on this program that these data sets are evolving, they’re interesting, they’re intriguing. For some people, it may be an easy incorporation. Frankly, some people may already be doing these things, but as you ask nicely, let’s include in the discussion non-pharmacologic as we heavily investigate the pharmacologic as well. We’re all open to that. Let’s see the data, and the data is evolving.   

Small Cell Lung Cancer Care | Optimizing Team Communication

Small Cell Lung Cancer Care | Optimizing Team Communication from Patient Empowerment Network on Vimeo.

How can small cell lung cancer team communication be optimized? Expert Beth Sandy from Abramson Cancer Center shares advice for communication between care team members and for setting expectations about symptom management and treatment plans.

[ACT]IVATION TIP

“…don’t feel afraid or scared to ask the questions that you want the answers to. And if you do, it’s okay to change providers, to be honest with you, because you should have that level of trust and ability to be open with your provider.”

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Transcript:

Lisa Hatfield:

So, Beth, how do you facilitate open and transparent communication between oncology nurses, patients, and their families and care partners to address concerns and set realistic expectations to ensure that everyone is on the same page regarding the symptom management and treatment plans?

Beth Sandy:

Yeah. So again, this is something that happens over time and I think it’s really important for patients to feel comfortable with their providers. If you don’t feel that you can ask your doctor or your nurse practitioner or your nurse, whoever you’re seeing, if you don’t feel comfortable that you can ask questions about your treatment and your disease, that’s a problem. You should have a good relationship with them. I feel like us in oncology as opposed to other fields like dermatology or whatever, I think we have a more personal relationship with them because this is a disease that often they’re dealing with for a long time and we want to make sure that we’re doing what’s best for them, what’s best for the patient.

So sometimes for me, again, I’ll say, how are you tolerating the treatment? Are you in bed a lot at home? Or are you feeling pretty good on the treatment? And then a lot of that too will partially be, well, the treatment is working very well. Are you willing to stay on it based on the side effects you’re having? But for me, it’s so much easier if the patient starts the conversation and says something along the lines of like, “I’m not tolerating this well, I’m not feeling well. Is there something more we can do? Or can we give less chemo?” Patients ask me that all the time.

And then we have a discussion about the pros and cons of that. So everything’s a discussion. Oncology is not black and white. There is gray area that we can work with you to improve your quality and be open about how much you want to know. Do you want to know exact numbers of your chances of survival? Do you want to know exact numbers of exactly how often this exact chemo works for other patients? We can give you those, but we don’t have to. So we really want to, for the most part, always instill hope, because I’ve seen lots and lots of miracles and great stories with patients who have done way better than I ever thought they would. So I would hate to say to someone, oh, this is the average when lots of my patients will do better than that. 

So I think my activation tip here is don’t feel afraid or scared to ask the questions that you want the answers to. And if you do, it’s okay to change providers, to be honest with you, because you should have that level of trust and ability to be open with your provider.


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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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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! 

What Telehealth Tools Impact Myeloproliferative Neoplasm Care?

What Telehealth Tools Impact Myeloproliferative Neoplasm Care? from Patient Empowerment Network on Vimeo.

How are myeloproliferative neoplasm (MPN) patients impacted by telehealth tools? Experts Dr. AnaMaria Lopez from Sidney Kimmel Cancer Center and patient Lisa Hatfield discuss specific situations and telehealth tools that benefit patients for improved MPN care. 

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Transcript:

Lisa Hatfield: 

Dr. Lopez, can you also speak more broadly to innovative telehealth tools that are making an impact on symptom management and overall cancer care?

Dr. AnaMaria Lopez: 

Sure. So one of the things that we know, is that, for example, people have appointments every three weeks, or they have appointments once a month with the oncologist, and a lot can happen in that time. So setting up systems that are assisted by technology, so that patients can report their symptoms in real time can be very helpful. And some of this may require…it may not be a common way where the person may be familiar going to a computer or going to their phone to kind of say, “This is how I’m feeling.” So that may require some engagement education, but often regardless of age, regardless of background, people find that really easy and find that so helpful to be able to say, “Oh, was it two weeks ago that I had that?” As opposed to just saying, “Hey, I just had this,” and then it can happen anytime day or night that the patient can report. And that way there’s…it’s just so helpful to have an intervention in real time.

The other part that’s good is that often some of these systems can kind of track. So we can look at it together and say, “You know what? Your fatigue tends to be a couple of weeks after therapy, so how can we either prepare for that?” Or just to have the reassurance that, “Yes you have that depth, but it gets better and you get through it.” So being able to look retrospectively and identify that can be helpful and I think also just the ease for people to be able to connect with multiple specialists, sometimes to have multidisciplinary visits where not only does the patient meet with everyone, but the patient can see that we are all meeting and interacting together. So all of those are incredible tools, one of my favorites though, one of my favorites is patients who are in the hospital and patients who are in the hospital a long time, on some occasions. So and even if a person’s not there a long time, it can feel like a long time, so to use the technology, not just to connect the patient, the healthcare team, but to use the technology to connect the patient with his or her family. And I think especially…I mean, a lot of people have smartphones, but it’s using your minutes, sometimes the Internet may not be so strong. So to use the technology that would be used for the clinical piece to have that available in the inpatient setting so that patients can feel connected.  

Lisa Hatfield: 

Yeah, that’s a really great thought that you brought up, too. I know when the pandemic was in full swing, but patients were starting to go back into the office to see their provider. For me, I was not allowed to take my husband in with me, so I went in alone. I was far enough along in my journey. I didn’t necessarily need a care partner with me, but some patients do, maybe a newly diagnosed patient. So that is a really great point. Say, a patient has to come in by himself or herself, is that a technology they can use? Are you willing to let them use their phone to maybe FaceTime during that call or we had to use the actual physical landline because my phone did not connect, the signal wasn’t strong enough. But do you allow that during your appointments to have patients contact somebody?

Dr. AnaMaria Lopez: 

Absolutely.

Lisa Hatfield: 

Okay. That’s great. Yeah.

Dr. AnaMaria Lopez: 

And also there’s pandemic, but there’s also…people live everywhere. So you could say their son could be in California and I’m in Philadelphia and this way it’s okay, we’ll just beam them in. 


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How Can Myeloproliferative Neoplasm Patients Use Integrative Health?

How Can Myeloproliferative Neoplasm Patients Use Integrative Health? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients benefit from integrative health? Experts Dr. Krisstina Gowin, Dr. AnaMaria Lopez, and patient Lisa Hatfield discuss common symptoms of MPN patients, integrative health techniques, and benefits of including integrative medicine.

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Transcript:

Lisa Hatfield: 

So I have multiple myeloma, and, of course, that comes with side effects from the different therapies and symptoms of their own. We have a great integrative health center at our cancer center here locally where I live, and I’ve used it for acupuncture for some of my symptom management. I’ve also watched you on different platforms, through webinars and patient support groups where you describe different integrative health techniques and that type of thing. So I’m wondering…two questions. The first part is, what symptoms do MPN patients face the most? And then how can they use integrative health to do that, particularly as it relates to telemedicine? Are there telemedicine options for integrative health? I suppose things like acupuncture, maybe not, but other types of, of integrative health, and can they get a consult for integrative health? Can they even go as far as getting a consult? So if you can answer those questions, the symptoms they face, how to use integrative health, and if they can get a consult for integrative health, that would be great. We’d appreciate that.

Dr. Krisstina Gowin: 

Yeah. Well, Lisa, I want to take a moment just to validate your journey that you’re going through and to congratulate you for your self-advocacy to go look for those integrative therapies to support yourself. And for MPN patients, I will say that it’s a really unique group, and so all cancer patients experience symptoms. But in myeloproliferative neoplasms, it’s really kind of this heterogeneous what we call a symptom burden. And so most patients will experience fatigue about 80 percent of MPN patients. But then beyond that, there’s really a whole slew of different sequelae that can be associated with the disease, which you may or may not think about when you’re thinking about MPNs, such as psychosocial issues, sleep issues, sexual issues.

And then we have kind of the classical issues that happen with MPNs, such as dizziness, but we talked about the fatigue, bone pain, itching, abdominal discomfort from an enlarged spleen and early satiety, or feeling full quickly. It’s really a huge symptom complex, if you will. And we now have validated measurement tools to better understand those. It’s the MPN symptom assessment form, which has really, I think, revolutionized how we look at MPN. It’s no longer just treating the blood counts. We’re treating the patient as a whole, and even within our NCCN guidelines, kind of how we as oncologists go through the algorithms of how to change therapy and how we look at patients. We now have symptoms in there. So even if blood counts are controlled, we may change therapies or even do a bone marrow based on symptoms alone. So symptoms are a huge thing in MPN. So getting to your second question for integrative health.

So I think that MPN…the patients in the community are really early adopters for digital engagement, which is fantastic. Everyone’s very engaged, and I’ve had the opportunity to work on meditation apps, yoga apps, a wellness-based app here from the University of Arizona, and patients just really accrue fast. Everyone’s so excited. And most of these, though, were very small kind of pilot trials, looking at feasibility, can’t we really do these things? But most of them as well are showing some impacts on depression, anxiety, sleep, and total symptom burden. So I do think that these modalities through digital platforms certainly can make a difference on the symptoms. And we’ve seen that with meditation. We’ve seen it with yoga, and we’ve seen it with a seven domain wellness app. And is it the digital engagement? I don’t think so.

I think it’s likely the integrative therapies that they’re receiving through that platform, right? We know meditation works, we know yoga works, perhaps not so well in MPNs. We need to build that evidence base, but other solid cancers, we know those interventions really work. But it’s wonderful to get that kind of early data, say it not only works, but it also works when you’re doing it at home, when you’re doing it on a digital platform. And so I would encourage all patients listening to this to, yes, look at what’s around you, what are the resources, what are the clinical trials? Looking at these different digital modalities for integrative medicine, but also to go get an integrative consultation.

And as Dr. Lopez already had mentioned, she does all of her integrative medicine via telemedicine now, which is fantastic. And so you, it’s really, it’s that, you know, your fingertips. You now have access to wonderful oncologists like Dr. Lopez to guide you in this journey. And the journey is not only allopathic Western medicine, but it’s treating you as a person, you as a whole symptom complex. And that’s really what integrative medicine aims to support you through. 

Lisa Hatfield: 

And you mentioned that Dr. Lopez also does her integrative health via telemedicine. So I’m going to ask, Dr. Lopez, can you speak to that a little bit more? How do you do that with patients? Do they just contact you and set up an appointment for an integrative health consult or appointment? And do you conduct some of that yourself, or do you send them to particular resources in the community?

Dr. AnaMaria Lopez: 

Sure. So, yes, patients can make an integrative oncology appointment directly. I really like to do the consults through tele simply because I can…as I was mentioning, it’s like a virtual house call to really get a sense of the patient. Often a partner, significant other, caregiver might be present as well, and as we know there’s the survivor and there’s the co-survivor. So including both can be very helpful to some people, and I think the initial intake…again, as Dr. Gowin was saying, it depends so much on what the person wants to do. So the first opportunity for coming together is simply, “Where are you? What are your goals? What’s important to you? And of the panoply of options, which might be the easiest or the one that you are most interested in?”

And so depending on what it is, we might work together, we might also bring in others if the person is really interested in making lifestyle changes, let’s say related to nutrition. The person might work closely with a nutritionist for some period of time and then come back, and we’d come together and reassess. You mentioned the acupuncture, and you can’t do acupuncture at a distance, but you can certainly teach people about the points and consider acupressure for certain points. So there are so many ways to engage and interact, but yes, I think like a lot of medicine, it’s a team-based approach.


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How Has COVID-19 Impacted Myeloproliferative Neoplasm Care?

How Has COVID-19 Impacted Myeloproliferative Neoplasm Care? from Patient Empowerment Network on Vimeo.

How has myeloproliferative neoplasm (MPN) care been impacted by COVID-19? Expert Dr. Krisstina Gowin from University of Arizona Cancer Center shares information from an MPN care study by the Mayo Clinic on some of the impacts experienced by patients. 

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Transcript:

Lisa Hatfield: 

So the pandemic has resulted in significant changes to many aspects of daily living for many of us, but for patients living with cancer like myself, there are different realities that we’ve had to deal with. Do we go in for our monthly blood draws, or do we wait a couple of months? So question for, Dr Gowin, can you give us an overview of the impact that COVID-19 has had on MPNs or MPN care?

Dr. Krisstina Gowin: 

Absolutely. Well, there was a really wonderful study that was done, really led out of Mayo, by Jeanne Palmer and Ruben Mesa, and it was an international study, and it looked at 1,500 MPN patients. And they asked questions like, “How many of you are actually having telemedicine?” And this was in 2020, kind of at the beginning. And over half of them had already been engaging in telemedicine. And about a quarter of them felt that their care actually was delayed a little bit and that there were actually consequences to that delay, so that really speaks to an international kind of change in the paradigm of how we’re delivering care for MPN patients. The other thing is the lockdowns, the lockdowns that were occurring for us here in the US and really internationally. And what they did is, they asked patients their MPN symptom burden, and those that were on lockdown, not surprisingly I think to all of us, had a significantly higher symptom burden.

So I think that really speaks to that A, yes, there was a very large impact of COVID on the development of telemedicine and the need for telemedicine. But it also underscores the need for symptom management that we now have a group of patients that are having a higher symptom burden, probably likely secondary to more sedentary behavior, more anxiety, more depression, but a higher symptom burden because of COVID. And so we really need not only more therapeutics and perhaps non-pharmacologic interventions to support their symptom burden, but it needs to be delivered on a digital platform.


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How Can You Thrive With an MPN? Advice for Navigating Care.

How Can You Thrive With an MPN? Advice for Navigating Care. from Patient Empowerment Network on Vimeo.

How can you thrive with an MPN? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss how to make informed decisions about your care and live a full life with an MPN.

 

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How Can Patients Navigate Care and Thrive with an MPN?


Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! Many years ago, I was diagnosed with a condition called myelofibrosis. At first, it was a scary to learn that I had cancer, but once I found the right treatment option for me, I’ve been living a full life.  

Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care of people with myeloproliferative neoplasms or MPNs.   

MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF. 

As Brian mentioned, with the right treatment, it is possible to live a full life and to thrive with an MPN. 

Brian: 

It’s so true. Navigating my care has been much easier because I partner with my healthcare team – participating in decisions makes me feel like an important member of the team. 

Dr. Liu: 

That’s right, Brian. When considering treatment, it’s important to weigh all of your options.  

While your healthcare team is the expert when it comes to the clinical side of your disease, you as the patient, are the expert on how treatment will impact YOU and your lifestyle.  

Brian: 

And as someone who knows my needs well, my wife is another key member of my team.  She comes with me to appointments and takes notes during visits, and when it is time to make decisions about my care, we both feel well-informed about the options. 

So, Dr. Liu – what factors should be considered when choosing an MPN treatment?  

Dr. Liu: 

Well, it’s important to note that everyone’s MPN is different so what may work for one person, may not work for another. In general, we consider certain factors,1 such as: 

  • The type of MPN, whether it is ET, PV, or MF. 
  • The patient’s age and overall health. 
  • Test results, including blood work or any genetic testing that has taken place. 
  • The symptom burden, which basically means how much the disease symptoms are interfering with a patient’s quality of life. 
  • Any pre-existing health issues. 
  • Finally, and most importantly, the patient’s preference.  

Brian: 

And I like to make informed decisions. So, when considering therapy, I also did some research on my own, and then discussed the information with my healthcare team. It helped my wife and me understand what we’d learned, and confirmed our decision. 

Dr. Liu, what sort of questions should patients ask their doctor when considering a treatment plan? 

Dr. Liu: 

Great question. When choosing therapy, patients should ask: 

  • How is the treatment administered, and how often will I need treatment? 
  • What are the potential side effects of the treatment? 
  • How will the effectiveness of the treatment be monitored? 
  • And, what are options if this treatment doesn’t work for me? 

Brian: 

That’s great advice. Once you’ve begun treatment, it’s important to continue to share how you are feeling with your healthcare team – be sure to mention any side effects or symptoms you may be having with your team. 

Dr. Liu: 

That’s right, Brian. If you speak up about what’s bothering you, we can usually find a way to manage the issue. 

It’s also important point to tell your doctor if you’ve missed a dose of your medication. Many of the newer MPN therapies are self-administered, and it’s important to let us know so we can adjust the plan if necessary. 

So, what steps should you take to thrive in your life with an MPN? 

Brian: 

  • First, understand and participate in treatment decisions. Be sure to share your personal preferences. 
  • Then, communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And, utilize your whole team – nurses, nurse practitioners, and others, are all there to help you. 
  • Use your patient portal. You can view lab work and test results, or even use the messaging feature to communicate with your team. 
  • Bring a friend or loved one to appointments and always write down any questions or concerns in advance.  

Dr. Liu: 

And, most importantly, remember you are at the center of your care. Advocate for yourself! 

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

How to Make an Informed Myeloma Treatment Decision

How to Make an Informed Myeloma Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several treatment options, how can you decide on the best therapy for your myeloma? In this explainer video, Sandra and her doctor walk through important considerations when choosing a plan, and provide advice for partnering with your healthcare team.

Download our Myeloma Office Visit Planner to help you have productive conversations with your healthcare team, here.

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Transcript:

Sandra:

Hi, I’m Sandra. Nice to meet you!

Several years ago, I was diagnosed with multiple myeloma. I had bone pain and felt very tried so I went to see my doctor – my bloodwork indicated that it may be multiple myeloma and I was referred to a hematologist.

After a series of tests, my diagnosis was confirmed. I was overwhelmed when I learned that I had a blood cancer, but my hematologist, Dr. Reynolds, told me more about the condition and how it’s managed.

Here’s Dr. Reynolds – she can explain it further.

Dr. Reynolds:

Hi! I’m Dr. Reynolds, and I’m a hematologist specializing in the care and treatment of people with myeloma. The different types of myeloma are:

Monoclonal gammopathy of undetermined significance or MGUS (pronounced em-gus or M-Gus). MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine.

And, smoldering myeloma, which 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.

Last is multiple myeloma. Multiple myeloma is a buildup of plasma cells in the bone marrow that crowds out healthy cells, causing symptoms and other problems in the body.

Sandra:

As part of my diagnosis, Dr. Reynolds ordered a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.

Dr. Reynolds:

That’s right. We also did additional testing to identify any specific chromosomal or DNA abnormalities to get a better understanding of the genetic nature of the myeloma cells. The results of these tests helped us learn more about the extent of Sandra’s myeloma, her prognosis, and which treatment plan could be most effective.

Sandra:

After I was diagnosed and we had all of my test results, I met with Dr. Reynolds, and she walked me through the goals of treatment for my myeloma.

Dr. Reynolds:

Right! First, we talked about the clinical goals of treatment, which are to slow the progression of the disease and to induce remission.

And, it’s important to note that because each person’s myeloma is different, they are treated differently – be sure to discuss the specific goals of YOUR myeloma with your doctor.

Sandra and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her myeloma.

Sandra:

Next, we talked about another key treatment goal: symptom management. Dr. Reynolds asked me to let her know about any symptoms that I experience.

Dr. Reynolds:

Exactly, Sandra. A significant change in symptoms can indicate that it may be time to adjust treatment, if the symptoms are due to the prescribed medication, or that the disease might be changing.

Common symptoms may include fatigue or weakness, loss of appetite, excessive thirst, and weight loss, among others. This is why it’s important to not only have lab work and regular visits with your hematologist, but it’s essential to share about any symptoms you may be having, even if you don’t think it’s related to your myeloma.

And, last but not least, we discussed the most important treatment goal: Sandra’s goals. Sandra let me know that she’s very social and enjoys traveling and spending time with her family – we wanted to make sure she could continue doing the activities she loves.

Sandra:

Then, Dr. Reynolds reviewed each of the treatment approaches with me, including potential side effects and how it may impact my lifestyle. We discussed the pros and cons of each option, and we went over what our next steps would be if the treatment plan needed to be adjusted.

Dr. Reynolds:

Exactly! When deciding on therapy, you and your doctor may also consider:

  • Your age and overall health,
  • Any presence or history of other medical problems, and
  • The financial impact of a treatment plan.

Sandra:

In addition to asking questions, my sister, Beth, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching myeloma and bringing a list of questions to each appointment.

Beth found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Reynolds:

As you can see, Sandra and her sister were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with a myeloma specialist to help you feel confident in your care decisions.

Sandra:

Dr. Reynolds let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Beth and I feel included in the decision-making process, as if it were a collaboration.

Dr. Reynolds:

That’s right! This is a partnership. So, what steps can you take to be more engaged in your care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Ask about relevant myeloma testing.
  • Learn about your options and weigh the pros and cons of each approach.
  • And, consider a second opinion or a consult with a specialist.

Sandra:

That’s great advice, Dr. Reynolds. To learn more, visit powerfulpatients.org/myeloma to access a library of tools.

Thanks for joining us!

How to Make an Informed MPN Treatment Decision

How to Make an Informed MPN Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several options, how can you decide on the best therapy for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF)? In this explainer video, Katrina and her doctor walk through important considerations when choosing treatment and provide advice for partnering with your healthcare team.

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Transcript:

Katrina:

Hi, I’m Katrina. Nice to meet you!

Several years ago, I started having headaches and felt very tired. After a trip to the doctor and undergoing bloodwork, I was diagnosed with polycythemia vera, or PV, which is a rare blood cancer that causes my body to produce too many blood cells. It was overwhelming at the time to learn that I had a blood cancer, but my hematologist, Dr. Liu, told me more about the condition and how it’s managed.

Here’s Dr. Liu–she can explain it further.

Dr. Liu:

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care and treatment of people with myeloproliferative neoplasms or MPNs. MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. Katrina was diagnosed with PV, which is one of the three MPNs. The three types of MPNs are:

Essential thrombocythemia, or ET, which means that the body is producing too many platelets. The second is polycythemia vera or PV. PV is characterized by the overproduction of red blood cells, and, in some cases, elevated white blood cells and platelets. And the third is myelofibrosis or MF, which causes scarring in the bone marrow that disrupts the normal production of blood cells.

When a patient is diagnosed with any of these conditions, there is a chance they could progress from one condition to the next.

Those that have been diagnosed with ET, PV or MF, should have regular visits with their hematologist to monitor their condition and find the most appropriate treatment to manage their MPN.

Katrina:

After I was diagnosed, I met with Dr. Liu and she walked me through the goals of treatment for PV.

Dr. Liu:

Right! First, we talked about the clinical goals of treatment for PV, which are to reduce the risk of a blood clot and ease or eliminate any symptoms.

And, it’s important to note that because each of the MPNs is different, they are treated differently – be sure to discuss the specific goals of YOUR MPN with your doctor.

Katrina and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her PV. Then, we went over what our next steps would be if the treatment plan needed to be adjusted.

Katrina:

Next, we talked about another key treatment goal: symptom management. Dr. Liu let me know that I should make her aware of any symptoms that I may be having, even if I don’t think it’s related to my PV.

Dr. Liu:

Exactly, Katrina. A significant change in symptoms can indicate that it may be time to switch treatments or that the disease might be changing. Those symptoms may include enlarged spleen, fever, itching, fatigue and anemia, among others. This is why it’s always important to not only have blood counts checked regularly, but it’s essential to tell your doctor or nurse about any symptoms you may be having, even if you don’t think it’s related to your MPN.

And, last but not least, we discussed the most important treatment goal: Katrina’s goals. Katrina let me know that she’s very social and enjoys playing golf and tennis with her friends – we wanted to make sure she could continue doing the activities she loves.

Katrina:

Dr. Liu reviewed each of the treatment approaches with me, including potential side effects for every therapy and how it could impact my lifestyle. We discussed the pros and cons of each option, together.

Dr. Liu:

Exactly! When deciding on therapy, you and your doctor may also consider:

Your age and overall health, any presence or history of other medical problems, and the financial impact of a treatment plan.

Katrina:

In addition to asking questions, my daughter, Sarah, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching PV and bringing a list of questions to each appointment.

Sarah found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Liu:

As you can see, Katrina and her daughter were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with an MPN specialist to help you feel confident in your care decisions.

Katrina:

Dr. Liu let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Sarah and I feel included in the decision-making process, as if it were a collaboration.

Dr. Liu:

That’s right. This is a partnership. So, what steps can you take to be more engaged in your MPN care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Learn about your options and weigh the pros and cons of each approach.
  • Consider a second opinion or a consult with a specialist.

Katrina:

That’s great advice, Dr. Liu. To learn more, visit powerfulpatients.org/MPN to access a library of tools.

Thanks for joining us!