Margo’s Story: Positivity and Hope from an MPN Patient

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Margo Sorgman was diagnosed with an MPN, polycythemia vera (PV), just a few months ago at the age of 71. She shares her story of learning about the condition, meeting with Dr. Brady Stein, and how she’s doing today.  Margo talks about why it’s important to “not sweat the small stuff” and why she’s hopeful about the future. 

Sponsored by Incyte Corporation. Produced in association with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

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Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Medicine, its medical staff 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.  Margo Sorgman was diagnosed with polycythemia vera when she fainted while watching her daughter during a sporting event and ended up in the hospital. Margo, thanks for being with us to share your story.

Margo Sorgman:           

Well, it was rather accidental.  I was part of a cheering crowd at the Polar Bear Plunge here in Chicago, which is a fundraiser for Special Olympics, cheering my daughter.  And she had plunged, and I had been fighting a bad cold and wasn't feeling great.  In fact, she said, “Mum, why don't you stay home?”  I said, “I won't miss this.”

And while I was there cheering her, I started just not feeling well.  And her friends gathered around me.  I felt a bit light-headed.  The next thing I know I'm in an ambulance, first time ever, rushed to Northwestern Hospital, and they began to assess what was going on. They thought it might be pneumonia, possibly a pulmonary in my lung, which is what they did find. But subsequently, there were a series of things that began to occur.  Real bad sinus infection that didn't leave, and then eventually my first attack of shingles, even though I'd had a shot—or shot, as we say in Boston.  And then my internist wanted me to go get a blood test and to check this kind of elevated red blood count, which I had been carrying subtly for a bit of time.

That led me to wonderful Dr. Brady Stein and his gentle, thoughtful, tender way, and we tested for the JAK2 gene, and here I am with PV.  And I will say when I met him because I'm a retired academic, I had done my research and had a full-page document with lots of questions.  So I came ready to ask and to learn.  He leaned towards me and said, “This is my life's work.  I promise I'll take good care of you.”  And I knew that would be the case.

Andrew Schorr:

Margo, you became your own patient advocate right away. What motivated you to take action?

Margo Sogman:            

Well, when I heard about the elevated red blood count, I did what many people do. But I'm an academic, I'm retired from the university, so I like to research. And I like to find answers to questions, and I began to gather information and took lots of notes.  And I also knew that the wanted to communicate that to my daughter, to people I loved and to have accurate information.

And I used the net broadly for lots of things.  And you know the range of information from things that are very reliable to things that are so far out there that they're almost harmful.  And I wanted to think about it, to process it on my own, and I was really pleased to have that opportunity to do that. And so when Dr. Brady and I met, we were both primed, and he was pleased that I knew enough so we were able to drill down into the disease itself and what that meant. So that first session with him, I left feeling confident and very optimistic because some of those data were really dated.

Andrew Schorr:            

A lot of people say “don’t sweat the small stuff.” What does that phrase mean to you?

Margo Sorgman:           

I don't know if there's anything small when you get a cancer diagnosis, and I've done some writing about that. And when I had done research, somehow I had missed the word "cancer," And when I realized that's was I was dealing with, you take a deep breath and then you begin to move forward with it.  This is what I have.

 And I've had wonderful loved ones in my life who have battled real challenges.  One of the dearest people to me, I was part of her life for five-and-a-half years with ALS, and I had been close to her, and she allowed me into that disease.  And she told me something. She said, “I am not an ALS patient.  I am Laura who has ALS.” And that has been my mantra, you know, I'm much larger. This is one aspect of my life.

Andrew Schorr:            

Once you met with Dr. Stein, you developed a treatment plan. What treatments have you had so far?

Margo Sorgman:           

What's been so interesting about that, when I met with Dr. Stein he was anticipating, and he turned the computer to me. And we looked at data, and we looked at levels and forecasting, which is data based, he was able to think that I would have phlebotomy treatments, maybe three to four a year, come in for monthly blood checks.

So we began that process, and the phlebotomy treatments went very well.  The most sobering part was seeing young women who had cancer having chemo treatments. And I'm 71, so I'm looking at that thinking, ooh.  So it's very easy for me to kind of shed that anxiety, because there are other people there.

So that's what we've been doing.  We're trying to establish a baseline.  I take an aspirin, and we just have to pay attention to that PV in terms travel, so there might be some medication for that.  But right now it's pretty effortless, and I go for my treatment and then walk across the quad to my classes here at Northwestern.  So I feel very lucky in the right place at the right time dealing with something that's very unique.

Andrew Schorr:              

Do you have any ongoing symptoms from your condition or side effects from the treatment?

Margo Sorgman:

Actually, when I looked at symptoms, I describe myself as asymptomatic. And probably the only thing I've noticed, if I'm standing in one place for a long time.  Like I volunteer with children at Symphony Center, and I was waiting for their bus to arrive, and I—if I'm standing still, I get very tired, and I feel like I want to sit down.  Once I sit down, I'm fine.

So now I figured out how to shuffle my feet.  People probably think that white-haired lady is dancing and rather strange, but I'm going to keep shuffling my feet, because that takes away that kind of sense of being stuck in one place and not feeling great.  But other than that, I don't really see anything.  But I know diseases progress, but I'm an educator, and progress is positive. So I use that definition instead of the medical one.

Andrew Schorr:            

Margo, are you hopeful?

Margo Sorgman:           

Oh, excitingly so because when I met with Dr. Stein, I said it's rather miraculous that the JAK2 gene was uncovered in 2005.  How amazing to be with a doctor who is one of the premier researchers in the field.  And we laughed, he said because something people think (?) 205 is old data.  And I said, no, that's yesterday in geologic time.

And so to be part of an ongoing research effort that's uncovering all this information, to know with a surety what I have, it's not ambiguous, I think that's hard for people who have diseases where it's possible that it could move to the right or left.  I know because of the confirmation of the JAK2 gene what I have, and I don't have to think about those extraneous things.

Andrew Schorr:            

Margo Sorgman, all the best to you. Thank you for being with us now on Patient Power.

Margo Sorgman:           

Thank you.

Andrew Schorr:            

I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Medicine, its medical staff 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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Page last updated on September 24, 2014