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You’ve Been Diagnosed With an MPN: Now What?

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Published on April 16, 2018

The first program in our Partners series features Dr. Laura Michaelis, MPN patients Nick and Jill as well as Andrew Schorr. This new series allows for conversation around complex topics that MPN patients face while including a clinician to provide expert insight. Watch now to hear as the panel discusses MPN diagnosislab tests, and an intricate explanation of a bone marrow biopsysecond opinions and expectations at doctor visits. You’ll hear unique perspectives related to disease monitoringtreatment decisions, and what life is like with an MPN. 

Sponsored by Incyte Corporation. This organization has no editorial control. Patient Power is solely responsible for program content.

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Transcript | You’ve Been Diagnosed With an MPN: Now What?

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:                   

Hello and welcome to Patient Power and our first in a series of Partners programs for people living with myeloproliferative neoplasms, MPNs. What a mouthful. I have it. I’ve had it for a number of years, myelofibrosis. And we are going to be joined by a leading expert in the field and also two patients who are also living with it. Thank you for joining us, and thanks to the financial support for this program, Insight Corporation. Okay. Let’s get started, as we have a discussion about some of the issues that affect people, particularly when we’re first diagnosed. I want to introduce our guests. 

First of all, let’s go to near Memphis, Tennessee, Collierville, Tennessee, Jill O’Brien. Jill, thank you so much for joining us.

Jill O’Brien:                            

Thank you. 

Andrew Schorr:                   

Jill, so, you have been living with whether it’s PV or primary myelofibrosis, but basically since 2014, right?

About five years?

Jill O’Brien:                            

Yes.

Andrew Schorr:                                     

Okay. And you take hydroxyurea (Hydrea) now, and we’re going to talk about how you manage it and your regular visits. Now, let’s skip over to Westchester County, New York, and White Plains. I used to live there. All of my family grew up around there. My brother lives there now, Nick Napolitano. Nick, thank you for joining us, you also with PV, right?  

Nick Napolitano:                

Yes, I have PV. Thank you, Andrew.

Andrew Schorr:                                     

Okay. Thank you. And then, as part of this Partners program, we have a leading medical specialist with us who is a specialist in MPNs, and that’s Dr. Laura Michaelis who joins us from Milwaukee, Wisconsin. Laura, thank you for being with us on Patient Power once again. 

Dr. Michaelis:                       

Absolutely. I’m so pleased to be here. Thank you very much, Andrew.

Andrew Schorr:                   

Okay. And we should mention that Laura used to kind of do what I’ve done for many years. For years, Dr. Michaelis was a reporter. And so, she’s very into communication. And, actually, she’s the editor for the main publication for the American Society of Hematology. So, it’s all about communication. And it’s great that we can do this. So, let’s talk about diagnosis a little bit because we may have people watching who it’s all new. And we’re talking about more rare conditions. So, Nick, you are how old now? Are you still in your 30s?

Nick Napolitano:                

Barely hanging on, yeah, 39.

Andrew Schorr:                   

And you have two young children. I think your youngest is just 8 months old.

Nick Napolitano:                

Yes. 

Andrew Schorr:                   

So, you had a routine physical. What did it show, and what came out of that routine physical? 

Nick Napolitano:                

Yeah. So, it showed my red blood cells were high around 50, and my platelets were around 675. 

Andrew Schorr:                   

Hold on. Dr. Michaelis, what’s normal? 

Dr. Michaelis:                       

So, normal, generally, the hematocrit or hemoglobin—so, hemoglobin is your measurement of a certain kind of protein in your red cells. And the hematocrit is the percentage of that protein in your blood. We like to see people lower than that. Hemoglobin over about 16.5 in men. And in his case, he’s telling me his hematocrit, and that hematocrit of 50 is too high in men. It should be closer to under 50 more or less. And then, platelets are also elevated. In this situation, platelets should top out about 430,000 or 450,000. It’s important that everybody know that each lab has different normal. 

And that’s because those normal are derived from the patients in your area. So, if your doctor says this isn’t normal, ask what the normal is in your lab.  

Andrew Schorr:                   

Okay. Back to you, Nick. So, Nick, so, the numbers were out of whack. What did the doctor say? And what came out of that?

Nick Napolitano:                

Well, the doctor, basically, said let’s come back for another round of blood work, which I did, and it showed similar numbers that were elevated. And they gave me a choice to monitor it for a year or follow up and see a hematologist oncologist. So, I thought about it, but not too long, and I said I have kids, and let me go follow up with the hematologist oncologist locally. And so, that’s what I did. And so…

Andrew Schorr:                   

…and then, you hear these words, polycythemia vera. Nobody knows those words until you’re told it’s probably you or a family member. It must have sounded strange. And also, with a young family, pretty worrisome. 

Nick Napolitano:                

Yeah. My mindset going in, and I put off the—the doctor called me back because he tested me for leukemia and the JAK2 mutation. And I put off going in for a while because I didn’t think it was anything to worry about.

And so, I put it off for several weeks. And they wouldn’t give me the results over the phone. And so, I finally went in, and I still had this mentality that nothing was wrong. So, it was a shock. I was confused. I didn’t know exactly what it was, and the doctor didn’t over explain it, didn’t use the C word, didn’t use cancer. So, as I mentioned before, I did the worse thing I could possibly do, which was started Googling stuff, when I walked out of the office. And I was so shocked, I didn’t ask a lot of questions about it, and I should have.  

Andrew Schorr:                   

Right. And here you are, and you’ve come a long way now. So, Jill, let’s hear a little bit about your story. So, you had been having kind of clot issues, right? You had kind of blood issues.

Jill O’Brien:                            

Yes. I had had strange medical issues really ever since my 20s. 

In my mid-20s, I had Bell’s palsy on the left side of my face, which is still residual. Then, I ended up I was having strange pain issues, and I would get very little painful bumps in different areas of my body. That was in my early 30s. And they did a biopsy of that, sent it to Mayo. It came back with well, we think it’s vasculitis, but we don’t really know what type. So, through a rheumatologist, I was on methotrexate (Trexall) and steroids. And that controlled it for a while. And but my blood numbers just kept inching up. My red blood cell count, my white count, my platelets. But they would always explain it away.  

Like my white count, well, you’re on steroids, so you know, that’s probably why your white count is a little elevated.

And when my platelets, the vasculitis is inflammation. And, finally, once we moved here to Memphis, my rheumatologist here said I really think maybe you should go to a hematologist and see if there’s something else going on.

Andrew Schorr:                   

And you, ultimately, had a clot, right?

Jill O’Brien:                            

Yes. And it was right after I went to the local hematologist here, and he just went into well, watch and wait. Well, then, I ended up with this blood clot in my iliac artery and had to have two stents. And so, then, he decided to do a bone marrow biopsy. And that’s when the diagnosis of primary myelofibrosis came back. 

Andrew Schorr:                   

Okay, in 2014. Hold the story for one second. I want to go to Dr. Michaelis. So, Dr. Michaelis, people have these winding roads to these MPNs.

And I’m sure you see it all. And then, she mentioned a bone marrow biopsy, which might tell more of the story. Why does it take so long for people to get an accurate diagnosis?

Dr. Michaelis:                       

Well, one thing is that a lot of medical conditions can cause elevations in blood counts. And it doesn’t have to do with some kind of underlying bone marrow disorder. It’s because illnesses affect the bone marrow in ways. Rheumatological disorders can increase your white count. Certain medicines can increase your white count or even sometimes your red blood cell count. People can have elevated platelets after surgeries or sometimes after delivering a baby. So, it’s not always a disease when your blood counts are high. So, that’s the first thing. 

The second thing is that some of the symptoms of myeloproliferative neoplasms, whether or not it’s fatigue, whether or not it’s itching, those can also be associated with much more common problems like allergies or, for example, some people have fatigue because of heart problems or because of lung problems. 

So, very common conditions can sometimes mimic these unusual blood conditions. But, in general, if somebody has consistently elevated blood counts, predominantly elevations in their red blood cell count or their platelets, and that that elevation occurs even when the other medical issues or other things are under control, then, that’s a reason to sort of figure that out. One of the other things we now know is that the bone marrow is actually looking at the bone marrow, determining whether or not the bone marrow has fibrosis, what the early blood cells look like that are supposed to make the platelets that are supposed to make the white blood cells. 

That’s also an important part of our diagnosis because that can help separate myeloproliferative neoplasms out from either a disease that’s happening in the rest of the body and affecting the bone marrow or other bone marrow conditions like myelodysplastic syndrome. 

Okay. Now, Nick, have you had a bone marrow biopsy? 

Nick Napolitano:                

I have. And so, just to pick up on one of the doctor’s points on how elevated numbers can be sort of crossed over, I had pulled my numbers from the previous two physicals that I had done, which was about five or six years prior to that initial diagnosis. And they were elevated then, too. And they were in the high 40s, and one was 50. My red blood cell count and my platelets were high as well. So, I’ve sort of experienced that where they were high. How long did I have it? I don’t know if I had it back then, but possibly. 

Andrew Schorr:                   

Right. Let me just mention, I’ll just chime in for a little bit of my story. So, I had a clot, a DVT, deep vein thrombosis, Jill.

And then, I was actually in a trial for a blood thinner. And it was while I was being monitored in the trial, and I’m a big proponent of trials both to maybe have tomorrow’s medicine today but to be monitored carefully. And that’s when they said, and it wasn’t a hematologist who was doing that trial, said you need to go back to your hematologist, and we think something is going on. And that led to the mutation being discovered, the JAK2V617F mutation that’s active for me, and a diagnosis of primary myelofibrosis. 

I will mention one other thing about bone marrow biopsy, and Dr. Michaelis was just talking about it, it gives a lot of information. Now, us patients have had it. So, Jill, for people watching that never had it, the idea of a needle stuck in your hip is not a pleasant thing. What do you want to say about it? And I want to get Nick’s view, and I’ll give mine, too.

Jill O’Brien:                            

Well, I have to say, my first one with the local hematologist, I had no idea what it actually was. And I had just had a liver biopsy about a month ago, where it was like an outpatient thing. So, when my local hematologist said we should really do a bone marrow biopsy, and we can just do it today here in the office, I thought to myself that can’t be any big deal. It’s just an office procedure. But when I walked out of there, I was just in total shock. I could not believe the procedure.  

And maybe it was good that I didn’t know because – so, then, when I went down to MD Anderson, and, of course, they want to do their own bone marrow biopsy, and I thought, oh, my gosh, please don’t make me do this again.

But theirs was a piece of cake.  

Andrew Schorr:                   

Yeah, they have people…

Jill O’Brien:                            

…practice makes perfect, I have decided. 

Andrew Schorr:                   

That’s true.

Jill O’Brien:                            

Yeah. So, yeah. 

Andrew Schorr:                   

Have someone experienced do it. Nick, how about you? You’ve had it, too. 

Nick Napolitano:                

Yeah. And so, very similar thoughts. When I went for my second opinion, the doctor said, well, we can do a bone marrow biopsy. I’d like to do one today. I said, okay, how bad could it be? And he was just staring at me. And he’s like are you sure, are you up for it? I said sure. And he even said we’d like to take a little extra out for some clinical trials. I said why not. But it tickled; I’ll put it that way. 

Andrew Schorr:                   

Yeah. Well, I’ll just say, I want to get Dr. Michaelis’s opinion. So, I’ve had about 10 over the years because I’m dealing with an earlier leukemia, which has been controlled well, chronic lymphocytic leukemia. 

And I would say, first of all, have someone who is experienced do it. One time, I had a community oncologist do it, and he’s up on the table, and he doesn’t do it very often. So, have someone who is experienced. Often, in some of the larger clinics, they have physician assistants or technicians who do it, and they do it all of the time, in a major center. And you’ll have a little bit of lidocaine (Lidoderm) or whatever. Some people, sometimes, get something more. But it gives them a lot of information. So, but Dr. Michaelis, it’s important information for you and the patient to make determinations. And so, I guess, what advice would you give people on these tests that we need?

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.