Turning a PV Diagnosis Into a Positive: One Woman’s Journey

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Annette De Bow was diagnosed with polycythemia vera (PV) after the birth of her daughter.  She shares her journey from initial diagnosis, the visits with her first hematologist and why she decided to seek out better care. Annette was proactive, and it made a difference in her treatment and prognosis.  She also talks about how she started Trek for a Cure to raise funds for research by hiking.

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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.  I'm Andrew Schorr, and I'm with Annette De Bow, who's from Davis, where UC Davis is in California, not that far from San Francisco.  How many miles is it? 

Annette De Bow:

About 80. 

Andrew Schorr:

Okay.  80 miles.  She comes to the Stanford Cancer Institute to get expert care, which she's been getting.  But we want to tell you a little bit about her journey.  

So eight years ago, you have a little baby, you go into the doctor's office for a well?child checkup, and you're concerned about the kid.  What does the doctor say to you? 

Annette De Bow:

So my doctor, who we share—my daughter and I share a doctor—looked at my 6?month old and said, “She looks great.” And she looked at me and said, “Wow, you look terrible.  You look thin.  You look tired.  Let's get a CBC.” 

Andrew Schorr:

Yeah, but new moms are tired. 

Annette De Bow:

Right.  Right.  And I chalked up all this fatigue to being a new mom and—and had no idea.  But after she said that I started realizing, wow, yeah, I am quite thin, and I have ringing in my ears.  I have bruising all over my body.  Walking up the stairs was challenging.  And so I got a CBC, and within the week she called back and said, “Um, you know, I think you have this poly?something.  Let's get it checked out. “

Andrew Schorr:

Polycythemia vera.  You never heard of it. 

Annette De Bow:

Right. 

Andrew Schorr:

But it was an explanation for what was going on. 

Annette De Bow:

Exactly.  It—yeah.  I looked at—of course, when I heard about polycythemia vera she told me, “Don't—don't get too nervous.  Don't—don't go on the computer yet.” But I, of course, did and looked at the profile for PV, which I did not fit at all.  It was somebody over 60 who was white, who was male, and it was pretty shocking. 

Andrew Schorr:

You were 42 and a new mom.  

Annette De Bow:

Yeah.  

Andrew Schorr:

Okay.  Typical.  You're diagnosed, you go to see an oncologist.  We're talking about a fairly rare illness that oncologists may not be totally up on things.  That's what you found, right?  You needed to find a specialist in the MPNs.  

Annette De Bow:

Right.  I went to the local cancer center, and I did meet an oncologist fairly quickly after that initial blood test.  And I tried to get as much information from him as I could, but I felt like he was not forthcoming and didn't seem that concerned and could not answer any questions visit after visit.  Because that first six months, of course, was a flurry of visits, of phlebotomies.  And I quickly went to the Internet again and found the best doctor I could in the area, and—and that was really great.  I learned even more. 

Andrew Schorr:

You went to a symposium…

Annette De Bow:

And then…

Andrew Schorr:

Put on by the MPN Research Foundation. 

Annette De Bow:

Right. 

Andrew Schorr:

And there's Dr. Gotlib from Stanford, who is a specialist in polycythemia vera and related conditions.  He's become your doctor.  

Annette De Bow:

Yes.  

Andrew Schorr:

How are you doing? 

Annette De Bow:

I'm doing great.  I'm really doing great.  I have worked through—I was on medication shortly after, probably a year after I was diagnosed to manage my platelet count and my hematocrit. But I still had a lot of symptoms, and so I've gone through a series.  I went from hydroxyurea (Hydrea) to peginterferon alfa-2a (Pegasys), which is a pegylated interferon.  And I was—still was not managing my symptoms, and as of January this year I've been on ruxolitinib (Jakafi), and I'm managing it quite well and feeling great.  I have a lot of energy now.  

Andrew Schorr:

Well, let's talk about energy.  Couple of years ago, few years ago, you started Trek for a Cure.  What is that and the purpose, and how has it done financially to help all of us?  

Annette De Bow:

So in 2010, so a couple of years after my diagnosis, I started kind of thinking about the things that were really important to me in my life, and of course one of them is being in the wilderness.  And I really didn't understand what my prognosis was going to be, so I decided, you know, I'd really like to hike the John Muir Trail, which is a trail that goes over some of the highest passes in the continent. And it's about 211 miles. 

And in discussing it with my family, my husband, we decided here's a great opportunity to raise money for research, because, you know, PV is a rare disorder. And it does not get the kind of funding that some of the bigger cancers get.  And so in 2010, I found quite a few people, crazy hikers out there who were—who joined me on the trail. 

And, in fact, one woman learned about it through the MPN Research Foundation, and she flew down from Canada and joined me on part of the hike.  It was really great.  So I did that in 2010. And while it started as a journey into the wilderness, what turned out was this incredible community locally, my MPN community, but also around the world people were reaching out, supporting me. 

Andrew Schorr:

So you've done it twice, I think. 

Annette De Bow:

So I've done it twice, yeah. 

Andrew Schorr:

How much money has been raised for research? 

Annette De Bow:

I think, the Trek for a Cure we've raised close to $70,000.  

Andrew Schorr:

Wow.  

Annette De Bow:

Yeah. 

Andrew Schorr:

So this woman has taken her diagnosis and turned it into such a positive for so many which us, and, really, it's touching.  So I really want to thank you for all you do.  I hope you'll be trekking for many, many years, and if you can get financial support and build a bigger worldwide community, it's just great and get to be with that kid who is growing for many, many years. 

Annette De Bow:

Absolutely.   Thank you so much.  

Andrew Schorr:

Thank you so much for all you do.  It's a very inspiring story. 

Annette De Bow:

Thank you.  

Andrew Schorr: 

I'm Andrew Schorr.  And 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 October 8, 2015