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The Value in Seeing an MPN Specialist: Devising a Plan for Treatment and Follow-Up

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Published on May 29, 2018

A highlight from our first “Partners” program in the series, geared towards newly diagnosed MPN patients, a clinician and patients share their perspective on consultations with specialists and seeking a second opinion. MPN specialist and researcher, Dr. Laura Michealis from the Medical College of Wisconsin, goes on to explain her process for confirming diagnosis as well as the strategies for determining a treatment and follow-up schedule. 

Sponsored by Incyte Corporation.

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Transcript | The Value in Seeing an MPN Specialist: Devising a Plan for Treatment and Follow-Up

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:          

So, Jill, you have ongoing conversations with your MPN specialist, in your case, Dr. Verstovsekwho we know well, about what’s the plan, right?

Jill O’Brien:                

Yes.

Andrew Schorr:          

And you’re a very active participant in that what do we do now discussion. 

Jill O’Brien:                

Yes. I’m one that I don’t like—I’m not good with gray area. So I need to know black or white, what are we doing, what’s the plan?

Andrew Schorr:          

Right. And what could be next?

Jill O’Brien:                

Yes. 

Andrew Schorr:          

What could be next. How about you, Nick? You said you sought information. I’m grateful. Both of you have landed on Patient Power and are part of our community. 

Nick, you play an active role in your discussion. I know you’ve gotten even second and third opinions. It can be—did you start hearing the same thing? Or did you get confused?

Nick Napolitano:         

Well, it’s interesting because part of the reason why I went to go see Dr. Heaneywas because I got different opinions on how often I should get a bone marrow biopsy. In general, this disease is rare. It was new for me. So it was all about information seeking. It was all about trying to own my care. So it’s part of the reason why I’ve gotten several different opinions. But within my second opinion, I got two different opinions from two different doctors at Cornell on whether or not I should get a bone marrow biopsy every year. So that prompted me to go to Dr. Heaney and seek out additional information on that. And then, at the end of the day, you own it.

You own your care, and you have to make a decision, based on that. So it was informative for me to do that.  

Andrew Schorr:          

Right. Okay. Dr. Michaelis, so, each of us, and you’re an MPN specialist, and we preach this all of the time on Patient Power with these more rare conditions, is to have a consultation at least with an MPN specialist.  

Dr. Michaelis:             

Yeah. So, I agree 100 percent, Andrew. In particular, I don’t think any good doctor ever doesn’t want you to get a second opinion. Most of us, if I’m faced with a condition I have never seen before, I absolutely recommend second opinions to people. I also think that it’s helpful for patients to hear that, unfortunately, sometimes, there’s not black and white answers. And so, many of us would love to hear well, you do this, and then, the following will happen. 

But when we’re dealing with rare conditions where we don’t have huge numbers of patients through which to understand the expectations of the given disease trajectory, or if you’re dealing with a patient like Jill, for example, who has had other medical issues and has taken other medicines. 

So her bone marrow is not going to be the same as one where it just arrives out of the blue, for example, it may be helpful to hear one or more doctors say well, there’s what’s definite and what we don’t know. And here’s what’s definite, and here’s sort of the area that we don’t know yet. And here’s how we’ll think about that for you.

Andrew Schorr:          

Okay. So, I wanted to tag onto that. So we get this information, and you get to know the patient and whether whoever Nick selects is sort of going to be his quarterback, or Jill has picked somebody. I have Dr. Jamieson here in San Diego, all MPN specialists, and yourself. How do we then have a discussion on what to do about it and how to tweak it or change it or monitor it to see if it’s working?

Dr. Michaelis?

Dr. Michaelis:             

Yeah. So, I, typically, just want to—I always start with a framework where, one, how sure are we of the diagnosis? What are we going to call this? And what information do we still need, if anything? Have you had the right molecular testing? If you were JAK2 negative, for example, have they checked for Exon 12, which is another mutation in the JAK mutation or something called CALR or MPL, in the cases of essential thrombocythemia. So, I want to make sure I have the right diagnosis. And after that, I go through something called risk stratification. So, there are different risks associated with these diseases. 

Sometimes, the risks are based on blood clots like the one that Jill had in her iliac. Sometimes, people find this accidentally like Nick did. And in those situations, we know that the risk is based a little bit more on other things going on in the body or, for example, their age.

So, after diagnosis, I say what is a risk posed to you by this disease, and then, I go through what our treatment options are. And I say what are the risks posed by the treatments. And does the risk of the treatment outweigh the risk of the disease, because that’s when I want to intervene. After I do that, I think about what are your goals. If somebody is 85 and very infirm, their goals are much different than somebody who is 65 or somebody who is 45. So I try and think about what those goals of care are and direct the care towards those patients’ goals. And, in my practice, and in my opinion, a lot of the care for this disease is about information sharing and about communication. 

And it’s less about the pills that you take. And having an open idea of communication and educating the people who come to see you about what they should expect and shouldn’t expect is an important thing.  

And there are certain surveys that can help with that. There’s something called the MPN-SASwhich is a survey that I have all of my patients fill out when they come. It helps keep track of fatigue, of problems with energy levels, problems with itching, for example, other things that are going on in their life. And then, we can talk about whether or not that’s related to the disease, the treatment, or something else that we should figure out.

Andrew Schorr:          

So, now, you agree with the patient on a treatment plan. So what agreement we have on monitoring like when do you want—how do you decide say Jill, I want you to come back so often, or we’re going to have you get monthly blood tests, or whatever?

Laura, how do you decide on that? 

Dr. Michaelis:             

So I decide based on the aggressiveness of the disease and the novelty of the therapy. Somebody’s disease is behaving aggressively. Over the last four months, I’ve seen their white count go from normal to less than 2, for example. So a light count that’s gone down. Of if they’ve needed more phlebotomies that I would expect, then, I’m going to see them a little bit more frequently. And I’m also going to make sure they know to call me, if they’re symptomatic or have their doctor at home call me. But if somebody has been on therapy for a while, things have been stable, I will let them go longer without seeing me. 

My typical regimen is about three months to check in on a stable patient with either a low-risk myelofibrosis, intermediate-risk myelofibrosis, PV, or ET. If they started a new medicine like, if I’ve put somebody on ruxolitinib (Jakafi) for the first time, I might have their labs checked two to three times in the first month, month and a half. 

And then, as that stabilizes out, I spread out those lab tests again. I try and keep a really open line of communication, because the patient’s experience is more important than my schedule.

Andrew Schorr:          

Right. Now, in my case, I was on a higher dose of Ruxolitinib, and then, one day, my wife said what’s that purple mark on your body. And it turns out I was having bruising that was a concern. So that’s where we need to call. That’s where we need that partnership, right?

Dr. Michaelis:             

Absolutely. When you think something is wrong, if something is not looking normal, there’s no downside to calling. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.