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How a Second Opinion Improved My Care: A Patient and Doctor Story

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Published on July 24, 2015

Andi Malitz was diagnosed with essential thrombocythemia (ET) at the age 46. After 12 years with a hematologist, she sought care with MPN specialist Dr. Brady Stein at the Robert H. Lurie Comprehensive Cancer Center in Chicago. In this program, Andi, along with Dr. Stein, shares her story from diagnosis to present day. Dr. Stein talks about making treatment decisions with Andi, and she shares advice for others living with an MPN.

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Robert H. Lurie Comprehensive Cancer Center of Northwestern University

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Transcript | How a Second Opinion Improved My Care: A Patient and Doctor Story

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. 

And the doctor did the blood tests and called me one afternoon and said, you know, I'm really concerned.  Your platelet counts are very high, and has anyone ever talked to you about essential thrombocythemia, and—you know, at work.  And I said, no, I really don't have any idea what you're talking about and almost asked what are platelets, but I knew what platelets were. 

I said no.  And he said, well, do you mind, you know, if I call your physician?  He goes, I actually know him.  So he did call my primary physician and sent me over there.  I think I went in within the next couple days.  They drew blood again and determined, you know, probably should go see a hematologist. 

So that's when I went—you know, I was kind of a little bit in a fog, because I didn't really know what was going on. But then once I kind of understood what was happening and then, you know, really started talking about the bone marrow biopsy and what this is and what we need to do, I really did start to kind of absorb it a little bit and understand it a little more. 

We didn't go into treatment right away.  I started with, you know, a baby aspirin regimen for I think probably about nine or 10 months, but my platelets kept rising pretty quickly, so I think they had gotten up to about 1.2 million, and then he had put me on hydroxy (Hydroxyurea). 

And it was a kind of a combination.  It was a light bulb that went on that there's a lot of information that I was not aware of.  And, number two, Dr. Stein talked about something that was very near and dear to me, and that was quality of life, and I felt that this was somebody that would really understand what I'm looking for in a physician and could be somebody that I can talk to and talk about some of the things that are bothering me, and again, not necessarily understanding if they were symptomatic of the disease and then later found out that they were more symptomatic of the high dosage of the hydroxy that I was on. 

The next question we ask, how are you doing with this disease?  Are there symptoms from the disease itself, or are there symptoms from the treatment of the disease? And if so, do we need to make some adjustments? 

So we spent a lot of time talking about that, and what we felt was perhaps some of the symptoms she was experiencing were due to the medication, and so we—we worked on a therapeutic strategy.  And when you've been on a medication for 11 years and the same strategy and told one school of thought, I think it's very difficult to make any kind of change. And I think that, you know, what I wanted Andi to do is think about the recommendations, to take a step back.  And we weren't going to do anything necessarily drastically, but it was a change in approach.  It was different than what she had been doing for the left number of years.  So that's how our visit went. 

I did have difficulty at first, and Dr. Stein knows that I would either call or see him or email him with now, you're sure?  You're sure that my platelets should be this high?  You know, we set up where I would go monthly for a blood test, for a CBC, and I wasn't used to that protocol.  I wasn't used to, you know, having that kind of immediate gratification, if you will, of having a conversation pretty much almost in the same day sometimes when my test would can come back, and to say, you know what—and actually, surprisingly, watching my platelet count go up as we reduced my hydroxy even by one tablet a day, it was—it bothered me.  I was scared because I kept thinking, oh, I'm going to have a stroke.  I'm going to have a stroke, you know, my platelets are too high. 

And, again, Dr. Stein, you know, telling me and educating me that this is—we're looking at this, but we're also looking at all these other things that are in your CBC, and through these other tests, these genetic tests and these other types of tests that we did found out that, well, yes, I do have ET.  It was confirmed I have ET, however I have—if there is, I have a healthy ET.  My blood is a very healthy blood.  My blood is showing a very low propensity to clot, and therefore it's okay that my platelets are a little higher. 

So as the months have gone on and I've become more educated and more comfortable I do understand, and I'm absolutely thrilled that I made the change. 

And outside of an academic institution that's just not possible.  The hematologist/oncologist has to think about and remain very up to date about a number of different diseases.  So a typical day might be seeing a patient with a blood clot, pancreatic cancer, lung cancer, breast cancer, colon cancer, prostate cancer, anemia, so you can see that the breadth of conditions is great. 

So I get to focus on a small area, and I try to learn everything I can about a small area.  So that's I think the luxury that we have here, and I think that's the benefit a patient with a rare disease can have by having a shared approach.  Seeing someone that's close to their home, we understand that.  It's not always easy to get here, and some patients live close, there are other patients who don't have someone who focuses on MPNs near them.  But if you have a relationship, and even if we see each other once a year we can use that yearly visit to update one another, and I can share what's changing in the field.  Are there practice-changing clinical trials or diagnostic tests or issues of—aspects of prognosis?  So we can use that yearly visit to communicate those findings. 

But then we also have a team. And so if there's something changing about your course, I can help with you and your doctor, and we can troubleshoot together.  We may not always have the answers, but we can—we can try to brainstorm and come up with a strategy to change.  So I really do believe in a team approach. 

And we have the luxury here to think about this every single day, where a busy practice with a variety of illnesses, if you have one or two ET or PV or myelofibrosis patients in your whole panel, it's—you just can't stay up to date on everything that's changing. 

Because, really, going to a generalist in hematology/oncology, as Dr. Stein had said, I felt—and I would tell someone, too, that I felt like I was maybe his, you know, six?month comedic relief.  You know, I was the happy coming into his office.  He was seeing really sick people.  But I would also say don't—don't take for granted or overlook if you're not feeling well.  If you're tired—you know, in my case I was going through the mouth sores and, you know, some other things.  Make sure that you talk about those things immediately.  And don't go online and start playing, you know, doctor at home on the Internet game because, you know, you're either going to find things that aren't true—you're going to—if you have half a brain you'll find things that are true, but bring those things to your doctor right away. 

And if you're newly diagnosed talk about everything that's bothering you.  I didn't really know the spleen-ET connection before.  Luckily, I don't have that problem.  I certainly didn't know the tests that could be taking to talk about your propensity to clot.  Make sure you talk about that with your doctor. 

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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