Patient Story: How Modern Therapies Impact MPN Patients

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Topics include: Patient Stories

How do modern MPN therapies affect an MPN patient on a personal level? At ASH 2017 in Atlanta, patient advocate Marina Peed joined Patient Power to share the ups and downs of her experience finding the right treatment for her myelofibrosis. Watch now to hear how innovative testing and therapies can impact MPN patients.

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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:

I want to bring you a story of somebody who has done quite well with having the right treatment for myelofibrosis.  Andrew Schorr on location in Atlanta at the American Society of Hematology meeting, and I'm with someone from Atlanta who is an MPN patient, and that's Marina Peed.  Marina, welcome to Patient Power. 

Marina Peed:

Thank you, Andrew.  Pleasure to be here. 

Andrew Schorr:

So, Marina, you developed in 2007 a kind of scary thrombotic event, right?  And you almost died.  What was that? 

Marina Peed:

I had a sore stomach, and it turned out I had sepsis and peritonitis due to three blood clots in my gut that caused part of my intestine to rot and rupture, and I had organ failure and almost died.  And they didn't know what the cause of it was. 

Andrew Schorr:

And was told by you earlier, you said 10 percent chance of survival? 

Marina Peed:

Yes.  It's the first time my husband heard doctors say we'll do everything we can. 

Andrew Schorr:

Okay.  The first time.  Then it was identified you had the JAK2 mutation, and then polycythemia vera came, a diagnosis two years later, 2009? 

Marina Peed:

Yeah.  The JAK2 diagnosis was made in 2009 when I almost had a stroke and a hematocrit of 69, and that's when they decided that it was probably polycythemia vera. And again I was rushed into care, because I was close to stroke, and I was having problems with—cardiac problems. 

Andrew Schorr:

Okay.  But you were treated for that for a while, but like some people with PV, it can transform into what I have, myelofibrosis.  That happened to you.  When, and how did you do with that? 

Marina Peed:

Well, the transformation was occurring in 2012, and in early 2013 I learned that it had transitioned, and I was experiencing bone marrow failure, and by the time I got back from Mayo Clinic I became transfusion dependent.  So I went from phlebotomies to needing red cells every couple weeks. 

Andrew Schorr:

Wow.  Okay.  So, as you know, for some people with more advanced myelofibrosis a treatment is stem cell transplant.  This woman had it four years ago.  You're looking at a very healthy-looking person.  So tell us about there is life after transplant. 

Marina Peed:

There definitely is, and I know a lots of folks have concerns and rightly so.  For me, it was a chance for me to live to see my son graduate from high school, and that was my big hope.  I have four siblings, and none of them were matches, and there was no match found in the United States. But fortunately a young man in, turns out, Germany was my 10 for 10 match, and he was willing to donate.  And he saved my life, and just a couple months ago I finally got to meet him. 

Andrew Schorr:

You met him.  Okay.  We need to connect with him sometime, the two of you.  That would be a wonderful reunion we could bring our audience.  So how do you feel about life now?  You've been through the ringer for sure as an MPN patient. 

Marina Peed:

Well, I am definitely in my bonus life.  Every minute counts.  I'm so grateful for the resources and our MPN community, because I learned a lot and got a lot of courage.  There’s a lot of down time and downsides to experiencing chronic disease, and when it escalates it's terrible.  So now I've got this new life and new health, and I want to put that energy to help speak for and get information back to other patients. 

Andrew Schorr:

And I should tell you Marina is here at this conference as a reporter for MPN Forum, a wonderful source of information, gathering news from the patient perspective on what's important.  Thank you for your voice as a patient, and I know there are a lot of people in the medical community who have really been helpful to you, too.  What do you want to say to them? 

Marina Peed:

I think everyone from the bench scientists that are working with pipettes and mice DNA to those that are doing trials and then those that see patients, my heart is full of gratitude that people get up every day looking at this issue and not resting until we have better treatments and hopefully a cure. 

Andrew Schorr:

Wow.  Well, thank you so much.  Here, on this camera here I want to give a big hug to this woman, and, Marina, thank you for all you do. 

Marina Peed:

And we appreciate you too, Andrew.  We get so much information to patients.  It's really, really important.

Andrew Schorr:

Thank you.  I have a wonderful team.  Marina Peed with Andrew Schorr on location, MPN patients, MPN super survivor here we hope forever.  Okay.  Looking marvelous. 

Marina Peed:

Thank you. 

Andrew Schorr:

And as we like to say, knowledge can be the best medicine of all.  

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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Page last updated on January 18, 2018