An MPN Story: Planning for the Future 14 Years After Diagnosis

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Topics include: Patient Stories

These days planning for the future, even with an MPN (myeloproliferative neoplasm) diagnosis, is commonplace.  Meet Margie Lunt, an MPN patient who was diagnosed with essential thrombocythemia (ET) in 2002.  Even though her diagnosis has progressed from ET to polycythemia vera (PV) and now myelofibrosis (MF), Margie’s faith and positive outlook allows her to keep going.  As Margie says, “I make life the best I can, as long as I can.”

This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with City of Hope. 

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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:

Hello and welcome to Patient Power.  I'm Andrew Schorr.  An MPN can happen to anyone, including a medical professional, and I'm sitting with one, Margie Lunt.  Thank you so much for being with us, Margie.  You're a nurse, and how many years ago you started to have some symptoms and your blood was out of whack?  

Margie:

It was 15 to 16 years ago. 

Andrew Schorr:

Okay.  And what did the blood test show? 

Margie:

Platelets over a million. 

Andrew Schorr:

Wow.  And how were you feeling? 

Margie:

Tired.  Extremely tired, and I was having nosebleeds. 

Andrew Schorr:

Okay.  Now, we should mention her work as a research nurse was working at a proton therapy center, right? 

Margie:

Yes. 

Andrew Schorr:

Working with cancer patients, and now you find out you're a cancer patient.  How did you process all that? 

Margie:

I see so many with cancer, you know, why should I escape it any more than anyone else so just make the best of it. 

Andrew Schorr:

Okay.  Now, let's talk about making the best of it, because you've been living with this 16 years, your condition has changed over time.  Now your diagnosis is myelofibrosis.  Is that right? =

Margie:

Correct. 

Andrew Schorr:

You take hydroxyurea (Hydrea). 

Margie:

Mm?hmm. 

Andrew Schorr:

Your platelets are still high but not nearly as high. 

Margie:

Right. 

Andrew Schorr:

And you spend three months a year in Thailand working with children. 

Margie:

Yes. 

Andrew Schorr:

So some people would say, Oh, my god I have a cancer, my blood is out of whack, I'm having to take a daily medicine, I don't always feel great, I'm just going to like stay home.  That's not you. 

Margie:

No.  I'm going to make life the best I can as long as I can. 

Andrew Schorr:

So what propels you?  I mean, in other words, is it thinking of those kids that you see or what keeps you going rather than some people would say, woe is me, and you've seen people like that who come for treatment.  They're depressed, they're down.  You seem extremely upbeat. 

Margie:

I think I'm a real people person.  I always have been.  I care about people, but I think bottom line I feel like I'm a child of God and that I as a child of God need to give the best I can for as long as I can to others. 

Andrew Schorr:

Okay.  Now you have children and grandchildren. 

Margie:

Yes. 

Andrew Schorr:

They worry about you, right?  They say—I mean it's—when we meet like this you are just a vision, if you will, and very upbeat and have a beautiful smile and you look great, but they know that there's something going on.  How do you just help people chill out, if you will, so that everybody's positive? 

Margie:

Well, my daughter has had a real plateful.  She has two children.  They're just nine and 11.  Those are my grandchildren.  She's a single mom and has been in school, so she hasn't been able to really—and she lives in San Luis Obispo, a distance away, so hasn't been able to really every day see how mom is doing.  And I've accepted that.  And I have lots of friends, and I have no family where I live.  Most of them are in the Northwest.  So this has been kind of something I've done on my own pretty much. 

Andrew Schorr:

Let's talk about this.  So you're a nurse.  So you understand what it means to have this diagnosis.  Like you understand it clinically what could be the symptoms, what do the blood counts mean.  Most of us don't know that.  We have to learn that along the way, and as you said you have lots of friends. 

So they're trying to figure out what is this cancer we've never heard of that Margie has.  So what's your communication with friends so that they know you're doing okay, they don't worry about it, that life goes on in a positive way? 

Margie:

Well, they don't seem to take it too seriously, I think because they see me doing things and feeling fairly well most of the time.  They don't see me otherwise.  So I think they know I have it, and they've asked about it.  I haven't told them it was a cancer.  I tell them it's a disorder.  I—my understanding is it can become a cancer situation if it goes too far. 

Andrew Schorr:

You mean like if it transformed into a leukemia?

Margie:

Yes, correct.  So my understanding has been it's not a true cancer at this point. 

Andrew Schorr:

Yeah.  They debate about that. 

Margie:

I know.

Andrew Schorr:

They call it that because it's abnormal cells…

Margie:

Right. 

Andrew Schorr:

…and manufacturing of blood cells in an aberrant way, if you will. 

Margie:

Right. 

Andrew Schorr:

Okay.  So it sounds like you're just going to keep on keeping on. 

Margie:

I am.  This summer things got a little bit worse.  My counts all went quite low, and we did get a donor, because it looked like possibly the transplant was rather imminent.  And then all at once they went way back up again.  And when they were low Dr. Snyder told me no more Thailand.  That was the hardest time that I've had.

Andrew Schorr:

Because you go every year. 

Margie:

Yeah.  And I love those people, and that was the hardest time for me.  I felt pretty low, but they're back up again so. 

Andrew Schorr:

Your plan is to go to Thailand. 

Margie:

I see Dr. Snyder this Monday and probably will make a decision at that time.  We'll see how things are. 

Andrew Schorr:

All right.  And one more thing.  You mentioned transplant.  So that can be sort of looming out there…

Margie:

It is. 

Andrew Schorr:

…for those of us with myelofibrosis.  How do you process that?  Transplant is a big deal. 

Margie:

It is.  And I think I have felt so well for so long that I haven't gotten real serious about it until Dr. Snyder said we need to get a donor.  And then I started being more serious about it.  He's given me the figures.  You know, I wish there were better figures with it, but my plan is to do well.  I—I don't know how it will turn out, but I'm not worried about it.  What comes will come. 

Andrew Schorr:

It sounds like you have a faith that propels you. 

Margie:

It does. 

Andrew Schorr:

Okay. 

Margie:

It does. 

Andrew Schorr:

Margie, I wish you well.  I want you to go to Thailand year after year after year.  I know it must be very satisfying work and meaningful, and it's great that you give back, so I wish you all the best. 

Margie:

Thank you. 

Andrew Schorr:

And long?term good health. 

Margie:

Thank you. 

Andrew Schorr:

All of us, we don't always know what the future holds, but I guess what's important, Margie, is we have the right care team and it sounds like you really do. 

Margie:

Yes. 

Andrew Schorr:

That's great. 

Margie:

Dr. Snyder's made a huge difference in my life. 

Andrew Schorr:

Okay.  That's great.  Hope everybody has a match just like that. 

Remember, 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 July 17, 2017