Conversations about MPN progression can become increasingly complex as patients face treatment escalation, clinical trial consideration, and long-term planning. In this EPEP podcast, Dr. John Mascarenhas, Professor of Medicine at the Icahn School of Medicine at Mount Sinai, shares his approach to guiding patients through these critical transition points. He discusses tailoring conversations to the individual patient, presenting treatment and clinical trial options with transparency, and balancing honesty, hope, and uncertainty while supporting informed decision-making.
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Transcript
Dr. Nicole Rochester:
Hello, I’m Dr. Nicole Rochester, and welcome to this Empowering Providers to Empower Patients (EPEP), Patient Empowerment Network Podcast. Today’s episode centers on one of the most challenging aspects of MPN care.
Navigating disease progression and the complex conversations that accompany major transition points. As patients move along the MPN continuum from ET or PV toward myelofibrosis, discussions often shift toward treatment escalation, symptom progression, clinical trial consideration, transplant evaluation, and long-term planning.
These conversations are not only clinically complex, but emotionally charged for both patients and providers.
In this episode, we’ll explore communication strategies that help clinicians guide patients through these transitions with clarity, compassion and empowerment, balancing hope with realism while preserving trust and emotional safety.
Joining me is Dr. John Mascarenhas, professor of medicine at the Icahn School of Medicine at Mount Sinai, and an internationally recognized expert whose work has helped shape the evolving landscape of MPN research and clinical practice.
Dr. Mascarenhas, thank you for joining us for this important conversation.
Dr. John Mascarenhas:
Yeah, it’s truly my pleasure. I look forward to the discussion.
Dr. Nicole Rochester:
I look forward to it as well. So, Dr. Mascarenhas, when patients experience disease progression, treatment resistance or evolving symptom burden within the MPN spectrum, conversations often become more complex and emotionally charged.
What communication strategies can you share that will help providers empower patients during these transition points, particularly when discussing treatment escalation, clinical trials, or long-term planning?
Dr. John Mascarenhas:
So it definitely can be complex, and it could be challenging to convey to patients, you know, where they sit in that spectrum of disease, and how the disease can evolve, and what the treatment options can be so that it’s digestible. And again, you really have to tailor that discussion based on the patient, their understanding of the disease, their medical literacy, and make sure that you can overcome any language barriers that might exist as well.
It is difficult, and I like to take it slow and go over the options rather than necessarily promote an option up front. I like to provide the patient with the menu of options that exist. And then I like to personalize it and say, you know, what of these options, what I think might make best for you based on your history in X, Y, and Z would be this option for these reasons.
And I like to provide some context of what that might look like from a toxicity standpoint, because I think we often focus on why we want to give it and the positives. But if you don’t, you know, provide a rounded discussion of what are the potential negatives, you know, that can be misleading and then, God forbid, if a patient does have a toxicity, they would feel like that was never disclosed.
So, I like to balance it. It’s a little overwhelming if you try to provide all the information, and then, you know, the positives and negatives. But I do think at the end of the day, the patients feel that they’re informed and that the decision, you know, I look for their feedback about their decision, you know, what they want to do, and sometimes there isn’t a decision, it’s just one option. But if there are more than one option, I like to go through those options and have the opportunity to hear what the patient thinks, and sometimes that’s not going to happen on that initial visit. It might take them time to go home, talk to other family members, do their own research, and think about it and further discussion.
I’m always open to further discussion. I think as I’ve gotten older, I’ve also become less dogmatic. I don’t impose my, you know, my bias, or I really think you should do this. You know, I recommend what you should, but I’m very open to those discussions, and…you know, at the end of the day, you know, you’re a shepherd, you try to guide the patient, but I’m not trying to always dictate every step of the way.
Dr. Nicole Rochester:
I love that you’ve evolved into that as you’ve aged and matured in medicine, and I’m sure that your patients appreciate having those two-way conversations. Are there things that you do differently when you’re…specifically when you’re talking about clinical trial participation? We know that this can be a challenging conversation for many patients.
Dr. John Mascarenhas:
It is, and it’s a large part of what I do. So I always announce, and I do it out loud, and I do it purposefully and intently. I always announce that I’m biased. I’m a clinical trialist, a physician, I care for patients, that comes first, but I’m also evaluating drugs, and that when I present it that way, I want patients to understand that I am biased towards clinical trials, because I do think that that’s what sets the tone for the next generation of therapies. And I am biased in the sense that I do think that…I genuinely believe that patients do better on clinical trials than the standard of care. In general, I do believe that to be a true thing.
And I think it’s because of a lot of reasons, but I like to point out the fact that when you’re on a clinical trial, it’s very regimented and it’s very methodical and rigid. And rigid sometimes is good in oncology care because it keeps us to a certain degree of standard and doesn’t leave a lot of wiggle room.
So I do think that’s a benefit often to patient outcomes, plus the fact that when you’re on a trial, there’s a lot more scrutiny, there’s a lot more observation of labs and results and decision-making, and you have a greater team involved. You have research nurses, nurse practitioners, clinical research coordinators, sponsors, CROs. So, I think you get more attention.
In fact, I’ve had many patients who are on clinical trials that when they end their clinical trial participation miss that aspect of their care that they didn’t have, you know, they go back to standard of care, and it’s kind of, you know, it’s not as, you know, it’s not always as enveloping as being on a clinical trial, so I do think there’s a lot of benefits to being on clinical trials. So I do try to, you know, explain that, but also I’m very up front. I’m biased.
You know, when I see patients, I’m also thinking about, is this an appropriate trial? I like to think that I’m, you know, I’m melding and I’m thinking about it in both directions. It doesn’t make sense for the patient. And, you know, is this, does this trial make sense for the patient? Does that patient make sense for the trial in both directions? But, you know, I think it’s a challenging discussion, and it’s one that we spend, at least in our practice, we spend a lot of time going on, and I never…I never have a patient make a decision about a trial on that visit. So, the other thing that’s really important is we…I introduce them to the research team. I’ll often step out so that I’m not part of the discussion, so they can hear it without me in the room.
I have to repeat it with them in the room, and then we always insist that they take the consent form home and read it, and then we always ask them to write questions on the back to go over at the next visit, even when patients are like, nope, I want to do the trial, like I’ll sign here, we never…we’re always like, nope, we’re not going to take, like, you’ve got to go home, you’ve got to read it, please share it, you know, happy to answer questions, and everyone has my contact information, so I’m constantly answering questions and concerns, but I really want patients to feel comfortable and never feel pushed or, you know, or coerced into a trial. You really have to believe in it and recognize that it’s for your own good. And if you don’t, you shouldn’t do a trial.
Dr. Nicole Rochester:
These are such trust-building tactics that you’ve built into your practice. I really love the idea of having them write their questions on the back of the consent form. Thank you for sharing that.
How early should providers start preparing their patients for possible disease evolution?
Dr. John Mascarenhas:
I must say, I do it early, I do it, you know, up front, and, you know, I frame it in the sense that you have a chronic disease, and one of the most frustrating aspects of having MPNs is, although it’s chronic, and the potential for progression in different ways can be, you know, at different time periods and present in different ways. It is that uncertainty, I think, that really makes it challenging for patients and their loved ones to not know when the proverbial, you know, shoe will drop.
So I do try to paint a picture, not of negativity, but of understanding and maybe endorse the fact that, you know, with your care, we are going to be looking for potential signs of progression and addressing them in a timely fashion.
So that it doesn’t feel like it’s an open-ended, you know, you’re going to fall off the cliff and then there’s no net there. So it’s really providing that sense up front, but reassurance that it’s a, you know, it’s a…it sounds corny when I say it this way, but it is a journey, and it’s a journey that, you know, I like to think that physicians take with their patients and help them along the way. And doing so means you have to be honest and you have to, you know, you have to, you have to explain what’s going on, and…and prepare patients, but not obviously frighten patients. So it’s really a balancing act of giving information, but also reassuring patients at the same time.
Dr. Nicole Rochester:
And speaking of that balancing act, how do you balance that hope with realism, when you’re having these types of discussions? And is there a specific language that you found that helps patients feel supported rather than feeling overwhelmed and afraid of what may come in the future?
Dr. John Mascarenhas:
Yeah, I mean, I think, you know, acknowledging that we’re people, and we’re not perfect, and that, you know, we don’t have all the answers. I think just that is reassuring to patients that, you know, no one wants the know-it-all arrogant physician who, you know, who’s just saying stuff that they couldn’t possibly know, you know, in reality.
So I think being open and honest that, you know, we have a lot of tools at hand that we use to help prognosticate, categorize patients into different risk groups, and have treatments to address different aspects that, you know, we have to personalize to that patient, and that, you know, we don’t always know what to expect down the road.
But that we’re going to keep our eyes wide open, and we’re going to be looking, you know, in a vigilant manner for symptomatology, laboratory changes, clinical exam findings, molecular changes that might change our approach and that will be dynamic in that process.
But because it’s heterogeneous, and it’s not always predictable, we have to…I think you have to be honest with the patient that we don’t always know exactly what the future is going to hold, and I think if patients realize that you’re being honest with them, I think it does create a certain sense of comfort, because you’re on that journey together. And then the whole point is that you’re going to help them through that.
Dr. Nicole Rochester:
Well, that brings us to the end of today’s Patient Empowerment Network EPEP podcast.
Thank you so much, Dr. Mascarenhas, for sharing such thoughtful guidance on navigating disease transitions, and thank you to our listeners. We hope today’s discussion helps you feel more prepared to support your patients and their families through these complex moments, fostering informed decision-making, emotional resilience, and continuity of care throughout the MPN journey.
I’m Dr. Nicole Rochester. Thanks for tuning in to this Patient Empowerment Network EPEP podcast.