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How to Find Your MPN Medical Team

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Published on June 29, 2020

After being diagnosed with a myeloproliferative neoplasm (MPN), Chris Frost reached out to leading cancer research centers, did his own research, and cultivated relationships with a local oncologist and a recommended specialist he trusts.

Chris shares his story with MPN specialist Dr. Edward Faber and Patient Power Co-Founder Andrew Schorr. They discuss Chris’ journey, beginning at the VA hospital to finding and choosing an MPN specialist to “quarterback” his medical team. Watch now to learn from an empowered myelofibrosis patient.

This program is sponsored by Incyte. These organizations have no editorial control, and Patient Power is solely responsible for program content.

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Transcript | How to Find Your MPN Medical Team

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:

Hello and welcome to Patient Power. I'm Andrew Schorr in Carlsbad, California, north of San Diego, living with myelofibrosis. Joining me now from outside Dayton, Ohio is Chris Frost. Chris, welcome to our program.

Chris Frost:

Thank you.

Andrew Schorr:

And you living with myelofibrosis as well, right?

Chris Frost:

Yes, sir. About five years now, as far as we know.

Andrew Schorr:

Five years. And also joining us is Chris's oncology, hematology, subspecialist, an expert in MPNs, as well as some other hematologic conditions. And that's Dr. Edward Faber from OHC in Cincinnati. Dr. Faber, welcome to the program.

Dr. Faber:

Well, thank you very much. And it's a privilege to be here, Andrew.

Andrew Schorr:

Okay. So what this program is about is how people like me or Chris with a more rare condition can get the expertise of a specialist brought to bear for us so we get the right care. And as we record this, Chris, with Dr. Faber and the team at OHC, actually, you're going to end up having a STEM cell transplant, right?

Chris Frost:

That's correct.

Andrew Schorr:

Okay. So let's go back and find out how you have navigated all this. So first of all, you're a military veteran, right? I think former military police, correct?

Chris Frost:

Correct.

Andrew Schorr:

You were in Desert Storm.

Chris Frost:

Correct.

Andrew Schorr:

You developed weird symptoms, right? What were the symptoms you developed?

Chris Frost:

It was pretty weird. Early, early in '92, late '91, right, leaving Desert Storm, I came back to the VA system in Dayton, Ohio. And they immediately threw a barrage of medications and diagnoses in front of me, which is how they kind of handle their business over there. Let's throw it all at it and whatever sticks is good. So dicyclomine, Bentyl, all these things for IBS, for some mood issues, and also for some breathing issues. So the inhaler's gone, the IBS, is for the most part gone and all those drugs that the VA wanted to keep me on are also gone. Because I've been in that system for almost 30 years now, I've seen some negative results sustained in the program. Their transplant program down in Nashville, the Veterans Administration program is rated fairly well. However, my wife and I decided that it was important enough for us to find somebody that was an expert. Somebody that I felt and she felt to give us some continuity and care, if that makes any sense.

Andrew Schorr:

Right. Right. So you wanted to go the extra mile? You're what I call a powerful patient with your wife. So you would get what's right for you. Now you started working with what's become a community oncologist, right?

Chris Frost:

I started working through the VA program with a fellow doctor. Dr. Kelly Miller was in the fellows program there at the Dayton VA when she was at the point where she was ready to be completed with her program and moved down the road. And I followed her out of the VA system.

Andrew Schorr:

Okay. So she became your community oncologist.

Chris Frost:

Correct.

Andrew Schorr:

But then you and your wife went further, you made calls to the Cleveland Clinic and other places. And that eventually led you to Dr. Faber, correct?

Chris Frost:

Well, if I'm being candid, sorry, Dr. Faber, you probably don't know this. But along the way, I've built a couple of wineries and winery clients are their own unique people. And one of them is the ex-head legal counselor for Ford Motor Company in Detroit, Walter Borda. Walter Borda sits on the board for Henry Ford Hospital and his wife actually died of a bone marrow transplant about 13 years ago, she had some other medical condition that I won't carry on with. But because he sits on that board, he contacted the specialist, hematology and oncology at Henry Ford, who did a little background check on our Dr. Faber here and said for the region that I am in, as long as I have "good insurance," Dr. Faber is the way to go. So I felt good with Jewish hospital with his track record and with my friend checking on him through Henry Ford Hospital in Detroit.

Andrew Schorr:

Okay. So your reputation precedes you Dr. Faber. So let's talk about this. So here you have a motivated patient who wants to get the best care and understands they have a more rare condition, certainly with myelofibrosis. So what's your view? You have consultations with patients who've come to you through other sources, whether the patient themselves or recommendation from community oncologists all the time. And it's pretty understandable in myelofibrosis that that might be a wise thing to do, right? Because it's a rare condition.

Dr. Faber:

Yeah, absolutely. When you look at myelofibrosis across all the spectrum, it's very heterogenous. And not only because of age, but all the different subtypes that we're learning, based on the molecular marker. So not every patient is truly the same. And you don't know that when you first meet them, to be honest with you. And that's, I enjoy Chris's story because I mean, first of all, when you're finished fellowship, you're moving on and you never hardly see your patients ever again. But Chris and Dr. Miller have been able to keep that relationship. And our practice and what we provide to the Dayton area is a satellite clinic. And it's a true collaboration, between all the community practices. So it's a way to translate what we learn to as many people as we can.

And since meeting Chris, the field has evolved quite a bit from when he first came to see me. There was a simple look over and we didn't have a lot of data other than the words, myelofibrosis. And a lot of times you return these folks back to their good doctors and many times you don't hear about the never again. And then, Chris then follows up in my clinic and we start doing some of the special testing. And that then really changes how we managed him. And it allowed us to navigate around COVID actually, which none of us could possibly have forecasted for.

Andrew Schorr:

Right. Right. Well, let's talk about myelofibrosis for a minute as an MPN. So what we've learned, and I think you alluded to it is you have genomic testing now to see what's driving somebody's MPN. Like for me, I have the JAK2 V617F gene. Somebody else may have CALR or an MPL. They're all the ones you know much better than I. And so you now, as a subspecialist, have the ability to see, given this patient, maybe other conditions they have. What's my armamentarium, if you will, to offer this patient? Whether it's hopefully towards a cure or towards a longer healthier life, so. And that's tough for a community oncologist to keep up with all that across all cancers, right?

Dr. Faber:

Yeah, absolutely. And it's not only that the testing exists, but the availability of the testing too. There are different labs. How insurance has paid for some of these testing, it's extremely variable. And so good doctors may intend to do good things, but have their hands held for whatever reason. And you're exactly right. It's beyond JAK2 now, it's genes that we call axl-1 and TET2 and they get very informative. And for some people, they're prognostic. But for others, they tell us the timing of when therapy may need to change or in Chris's case the timing of an allogeneic transplant.

Andrew Schorr:

Right. Chris, so obviously transplant is a big gun you're headed for. I did an interview with somebody on transplant years ago. And as that guy said, long time ago in Seattle, "It is not a walk in the park." And I think, you know that going in. But do you go to this with confidence? That's what your wife and you were looking for your care was confidence. Do you approach this now with some confidence that you've got the right team?

Chris Frost:

And I don't know if he wants this recorded or said later, but it was important to me that I find a guy that wants to win. I don't want somebody that's good at losing. If somebody's good at losing, they're accustomed to losing.

Andrew Schorr:

Right, well your point-

Chris Frost:

I want someone who's accustomed to winning.

Andrew Schorr:

And your point with the transplant is the transplant is a hope of a cure.

Chris Frost:

This is the hope, this is the hope, yeah.

Andrew Schorr:

All right. Let's talk about this a little more generally, Dr. Faber. So there are times when... And you give talks as a specialist, you give talks, you have a referral network, you try to educate community oncologists in what you can offer in certain specific conditions, more advanced care. So one way is the doctor makes a referral. How do you feel about what I call powerful patients like Chris, who start making phone calls, checking out... It can work either way. Do you welcome that?

Dr. Faber:

So medicine is changing so much over the last five to 10 years, social media, the electronic medical record. All of us, regardless of where our station is in the hierarchy of providing care for patients, patients have the right to look at second opinions and get third opinions. And life's a little bit different, when I think about 20 years ago when I started, diagnoses were questioned. I don't know that we do that much, but as more medications come up, become available into the landscape and then now cellular therapies. It's important to understand when to start these treatments, how long the wait before you need, the timing of when transplant is possible. And then what clinical trials, each institution may have some advantages to a particular patient that for that person, they have a clinical trial with a new agent that may hit a home run for them, so to speak or extend survival or progression free survival. We don't know that until patients enroll.

So I think it's important that we have information and we get as much as we can. When it becomes complicated, it's like going to your family reunion when you get so many of your aunts or uncles together that don't like each other, and then they have different opinions. Nobody can agree on what needs to be done, right? So that's something that as the primary or secondary, I feel like sometimes I'm the gatekeeper to manage all the information and keep it organized.

Andrew Schorr:

Right. And we should mention to our viewers that it's more complicated than ever. And Dr. Faber is getting at that. So for those of us, with an MPN, what testing has been done? First of all, do you have an accurate diagnosis? Right? And I've seen it both ways. I've seen people who were diagnosed with an MPN who didn't have it, and I've seen people who've had an MPN and it wasn't diagnosed or not for a long time, not correctly. So first of all, supporting Dr. Faber, usually at a main center like that are pathologists, who are pretty astute about getting it right. So first of all, do you have the right diagnosis? Right, Dr. Faber? And then what tests and your own analysis of our body and our overall health status, that's all like a constellation of data. First, you have to make sure it's accurate, right?

Dr. Faber:

Yep. Absolutely. Because as we know there, with myelofibrosis and Polycythemia vera and essential thrombocytosis, CMML, all of these disorders, they fall in that MPN category and they can have features of each other and they can evolve in... You may have a diagnosis that looks like P vera for a few years and then evolve into something a little bit different. And so you're exactly right, Andrew. Having that second look and that hematopathologist weigh in is very important.

Andrew Schorr:

Okay. So let's talk about how you get there. So Chris, for you, did Dr. Miller make a referral to Dr. Faber? How did he become your doctor?

Chris Frost:

Well again, we were faced with the choice of doing it all in Nashville for free. And Dayton physicians, the Greater Dayton Cancer Clinic there had... There were other oncologist hematologist on that campus that have had a relationship with Dr. Faber. So he was recommended initially to me from Dr. Miller. I don't know how she... I don't know how that relationship transpired.

Andrew Schorr:

Right. And then to get to OHC where Dr. Faber practices, did you call up? Or did somebody make an appointment for, how did it just happen?

Chris Frost:

Dr. Miller did. After I did some background checking, Dr. Miller set all this up for me. And actually, what worked really, really well for us in Dr. Faber's case is he's Cinci and I'm Springfield. You say outside of Dayton, but I'm a half an hour east of Dayton. So I have to drive to Dayton. And then another hour south to get down to Dr. Faber's office, it's an hour and a half away. Dr. Faber comes up once a month for me and he met me halfway at that Dayton Physicians Greater Dayton Cancer Clinic for those first couple of visits, which for me was everything. I own a small construction company. And I mean, this is the most important thing in my life, but driving to Cincinnati on a weekly basis, isn't all that fond.

Andrew Schorr:

So Dr. Faber, let's talk about that with you and what you're doing in your clinic. Are you starting to see patients sometimes on video? Not that you can do that all the time or even appropriate, and he's not going to have a transplant on video, of course.

Chris Frost:

Right.

Andrew Schorr:

Where are we now with the ability to, at least in your case, have some relationship with a specialist where it may be safer and more convenient?

Dr. Faber:

Before you get started, you have to make sure that you have a platform that is secure and stable for personal information. And after OHC accomplished that, this clinic that Chris referred to that I drive about an hour, once a week, actually on Tuesdays to meet patients, and do consults, and do transplant follow ups. It lended itself very well. And so I can follow individuals virtually and have them get their labs, say a day or a week before. And it works out really, really well. And when things get complicated, then yes, we have to have a live visit. And then the other part is, it does and can make it easier for patients to get second and third and more opinions. And a lot of the universities that surround us in the Tri-state area. And I believe they are doing the same thing also. So it's making the world a smaller place, basically.

Chris Frost:

Yeah. I'll say also, Andrew, that Dr. Faber has been kind enough to run our last couple of meetings. I don't know if it's Zoom, but it's some equivalent of a Zoom meeting-

Andrew Schorr:

Secure server.

Chris Frost:

And that's been very... I'm sorry?

Andrew Schorr:

A secure server, like for patient confidentiality now, as he was saying, you've invested in these platforms that are critical for the privacy.

Chris Frost:

Oh, they are. He's able to look. If I stand, he's able to look and see how much my stomach is distended, let's say. Or hey, if there's something that's bothering me, I can point to it and say, "Here is a lymph node that's been hanging around for 30 days." Those kinds of things. If he weren't as savvy as he were, I think again, probably would be forced with a different decision.

Andrew Schorr:

There you were, whether somebody was in the VA system or whatever the system was, you didn't have confidence-

Chris Frost:

No.

Andrew Schorr:

... that was working for you. And you were, as you said, spleen getting enlarged and other symptoms of myelofibrosis. You had faith in a doctor had been a fellow there that you followed into the community in the Dayton area. And between her and your own research that led you to a subspecialist, Dr. Faber, and now you're scheduled for a major procedure, a transplant. And you're going into that with confidence because you've done your legwork.

Chris Frost:

At this point, I've been as healthy as I can be. I've tried to stay fit, and active, and make the right choices in diet, and exercise, and choices in life. So really at this point, he's the quarterback. He's got the ball.

Andrew Schorr:

Okay. Okay. Dr. Faber, quarterback. I want you to give some advice beyond Chris because he knows the message, but for our viewers, what would you say to people who don't know where to start? What questions, if they've gone to a community doctor, but they have a more rare condition, like an MPN, what would you recommend questions they could ask of their doctor, or even suggestions they might make, or even other research they might do so that they get the best care? Wherever it happens, what suggestions would you make?

Dr. Faber:

Yeah, I live by the rule of three, so to speak. And when you talk about education to patients and when you're inexperienced, even myself, there's, can only handle about three good things at a time, so to speak. So I would say, ask your doctor, what three websites might they suggest? And you should get things like MPN Foundation or things beyond Leukemia & Lymphoma Society, and so forth, which are really good and, but something specific. And if you're having, still some problems understanding information or feeling that you've been satisfied with that, your local universities that surround you are... Just getting on their websites are usually a great source. And because the person that's dedicating his career to MPNs, they lie at those places. And so that's usually a really good start because you'll find good websites with basic information and then more detailed websites to follow up with.

And then after that, it's usually, there's somebody at that university that will be able to have a consultation, maybe in a virtual one through telemedicine to make it easier now, after they review all the information and then you can take it from there. The other part is making sure that you have a physician, a community physician that's willing to work because that individual has to be their advocate. And that's the way I look at this. I've been fortunate among different transplant programs. The transplant programs work really well with the referral centers. And even that's the way it works now. I'm in their phones, they're in my phone. And the communication is very good and it's very easy to work together. And because at some point you need the advocacy to make sure that things are getting done timely, properly, and trying to stay up with the best information. We just had a great report at ASCO that allogeneic transplant improves outcomes and survival, but it comes at a cost, potentially as far as side effects, including death. Very important message, and that's what needs to get out there, so.

Andrew Schorr:

Right. Okay. So pulling this all together for our viewers, I would say this, you are the consumer, you or your loved one is living with a condition and you want to get the best care. It's okay to ask questions. It's okay to do research. Patient Power's a source, the MPN Research Foundation, there's MPN Education and Advocacy, and even the Leukemia & Lymphoma Society as well. There are lots of sources and there are other patients, many who are on Facebook groups and others. Although a caveat there, sometimes somebody describes their situation, sounds like yours, but it may not be. And that's where all this testing and analysis of a specialist comes in. So if they say, "This is what I did, this is what you should do." You may have a very different clinical situation, and that makes all the difference. Or other conditions you're living with diabetes, heart issues, whatever that come into play. Chris, so you're a powerful patient. You're going into this now with a new treatment with Dr. Faber, you have confidence about that. Would you echo what I said to consumers to really be their own advocate?

Chris Frost:

Yeah, I think so. I think it's important that you like the person that you're working with, but you also feel like you're being taken care of. One other thing that I wanted to mention that I don't know the exact relationship, but I'd like to make sure I say is Margy that works with Dr. Faber. He's got a fantastic assistant there in her and the two of them are a team, I feel like.

Andrew Schorr:

Great, great.

Chris Frost:

So that Margy helps it. There's so much good there. I really wouldn't even know where to start. Communication, visibility to meet me halfway and come up from Cincinnati, his brain and the things that he knows from 20 years of experience. Just like you said, anyone that I mentioned this to says, Do you know, I had an uncle that had a bone marrow transplant?" I really don't want to have that conversation with anyone other than Dr. Faber.

Andrew Schorr:

Right.

Chris Frost:

That's it.

Andrew Schorr:

Yeah, no. Well said, because your situation is unique and the technology continues to change, the data changes. He just mentioned from ASCO, American Society of Clinical Oncology, data coming out there on how to do it and do it right for you in your case. Well, I think this is an important discussion. We call this sort of a bridge program. How is the patient either the bridge or participates in the bridge between a more general hematologist, oncologist in a subspecialist like Dr. Faber. So if you're living with an MPN, you get the right care for you, right testing, and the right result. Chris Frost there in, outside Dayton. What's the name of the town you're in?

Chris Frost:

Springfield, Ohio.

Andrew Schorr:

Oh, all the best to you with your health, Chris. And we'll check back with you. And we hope that the transplant goes well, and you recover fully, and go on for a long life. We wish you all the best.

Chris Frost:

Thank you.

Andrew Schorr:

Okay. And Dr. Edward Faber from OHC in Cincinnati, but sometimes going up to Dayton and in this world of telemedicine now. Thank you for being with us and being available to patients like Chris and their local doctor in consultation. So people with a more rare condition, like an MPN, get the specialized care they need and deserve. Thank you for being with us. Thanks for all you do.

Chris Frost:

Thank you, Dr. Faber.

Dr. Faber:

Thank you, Andrew.

Andrew Schorr:

Okay. Pleasure. I'm Andrew Schorr, reminding you to be a strong advocate. And knowledge can be the best medicine of all. Thanks for joining us.

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.

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