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Sandra’s Story: Remaining Upbeat and Living an Active Lifestyle With PV

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Published on January 5, 2016

Essential thrombocythemia (ET) and polycythemia vera (PV) patients know that it’s all about platelet numbers. When Sandra Johnson’s platelet numbers climbed from the 600s to over 1,600, this marathoner and bi- and tri-athlete sought expert, specialized help.  Her advice? Get your annual exams, know your numbers, keep moving, do your research, get educated about your MPN and connect with a specialist.

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Transcript | Sandra’s Story: Remaining Upbeat and Living an Active Lifestyle With PV

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.        

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr.  I'm sitting with a fellow patient, Sandra Johnson, who has PV, and thank you so much for watching our programs on Patient Power.  She's been to one of our town meetings at MD Anderson. 

Sandra Johnson:

Yes.  

Andrew Schorr:

You're from Galveston, Texas. 

Sandra Johnson:

Yes. 

Andrew Schorr:

Worked in the petroleum industry for years.  

Sandra Johnson:

Yes. 

Andrew Schorr:

She's really good at math, which I'm terrible at, and even has a master's in accounting.  I can't even imagine because I'm terrible with numbers, but we share an MPN diagnosis.  So back in 2002 you have a well-woman visit, and they say something's cockeyed in your blood, platelets.

Sandra Johnson:

Platelets, which I'd never even heard of, but they said they were too high, and I said, so what does that mean. They said, well, you might get a stroke.  And I go, oh, that's not good.  So they send me to an oncologist, and all he seems to do is say, take a baby aspirin, we'll watch your platelet count.  

Andrew Schorr:

Which you did for quite a long time…

Sandra Johnson:

Yes. 

Andrew Schorr:

…but some people know the numbers.  The platelets then were about 600? 

Sandra Johnson:

600, right. 

Andrew Schorr:

Okay.  I should tell you with myelofibrosis now my platelets are under 100, but in PV or ET at this point yours were high.  And they continued to go up… 

Sandra Johnson:

Yes. 

Andrew Schorr:

…over time. 

Sandra Johnson:

Yes.  

Andrew Schorr:

So now we get to 2009, what was going on then?

Sandra Johnson:

Well, the platelet count was now around 800, and the oncologist that had been watching this said, well, we already tested.  We know you have the JAK2, which is not a good thing, so we really need you to do a bone marrow biopsy.  And a friend of mine said, “Well, I go to MD Anderson for bone marrow biopsies regularly.  That's where you need to go.”

Andrew Schorr:

So that connected you with a leading specialist at MD Anderson.  

Sandra Johnson:

Yes. 

Andrew Schorr:

Dr. Verstovsek.  Okay.  And so again still the diagnosis of ET. 

Sandra Johnson:

Yes. 

Andrew Schorr:

The baby aspirin. 

Sandra Johnson:

Yes.  

Andrew Schorr:

Okay.  Things though got worse. 

Sandra Johnson:

Yes.  

Andrew Schorr:

Let's talk about some of the symptoms you began to develop. Many people complain of headache. Headache?  

Sandra Johnson:

Absolutely.  They were terrible, and I had thought that when I went into menopause they would quit, but they didn't.  They got worse and worse.  

Andrew Schorr:

Okay. 

Sandra Johnson:

Migraines.  

Andrew Schorr:

And then other symptoms that developed over time.  Sweating? 

Sandra Johnson:

Sweating, itching, forgetfulness, confusion, tingling in the feet.  My face would get really, really red anytime I did any kind of exertion.

Andrew Schorr:

Now, you're a runner. 

Sandra Johnson:

I am. 

Andrew Schorr:

And this woman has run half-marathons, so she has energy. You're very devoted with your church, you play the piano.  

Sandra Johnson:

Yes. 

Andrew Schorr:

You work with children, you do lots of things.  But you would go running, and you were saying your face would get red.  What would people say to you?  

Sandra Johnson:

They would stop me on the street.  Even after a two- or three-mile run, which is pretty short, they go, oh, are you okay?  I go, well, yes, and then I'd come home and see in the mirror, just be beet red.  

Andrew Schorr:

Okay.  And ultimately Dr. Verstovsek says like many people with PV phlebotomy.  

Sandra Johnson:

Yes.  

Andrew Schorr:

Taking blood out, and I know you're thin, and you were telling me you were never even able to give blood. 

Sandra Johnson:

Right.  

Andrew Schorr:

So now they're taking blood out.  But did that help? 

Sandra Johnson:

It did, almost immediately.  They said I would feel lighter, but I didn't feel that, but I did feel better, wasn't burning up all the time. 

Andrew Schorr:

Headaches.  

Sandra Johnson:

And the headaches went away.  

Andrew Schorr:

Wow.  Okay.  So baby aspirin, then phlebotomy, but then you needed something more.  Many people take hydroxyurea (Hydrea).  

Sandra Johnson:

Right. 

Andrew Schorr:

For you? 

Sandra Johnson:

And in January of this year, my platelet count went over 1,600.  

Andrew Schorr:

Wow. 

Sandra Johnson:

And so, Dr. Verstovsek, he's so good.  He had said originally we're going to take the least invasive way, and every symptom we would treat with whatever worked, you know.  He'd start with the mildest form.  So he said, we need to try something different now, and so hydroxyurea.  I had to learn to say lots of big words.  But started taking it, and he saw me every three weeks until we got the dosage right, because initially it made my mouth so tender and lots of sores in my throat and very uncomfortable. 

Andrew Schorr:

So the dosage has been adjusted. 

Sandra Johnson:

Yes. 

Andrew Schorr:

How are you doing?  

Sandra Johnson:

One of those little pills a day and it's—it's working.  The white blood cells, red blood cell counts are down.  Platelets are down to in the 600 range again, so for me that's really low.  

Andrew Schorr:

Okay.  Still running? 

Sandra Johnson:

I am, and in fact did my first triathlon, which is bicycling and swimming and running.  Last month and tomorrow, assuming I can get up I?45, I've got a duathlon, so I run and then bicycle then run again. 

Andrew Schorr:

Wow.  Okay.  So you're living with PV.  That came after ET, and you're living, and you're active.  So what would you say to people who get a diagnosis like you did or I did of something we never heard of?  

Sandra Johnson:

Well, first, get your annual exam, so you get your blood work so you even know. And tell the doctor about what's going on, because all of these symptoms that I was experiencing were—once I knew it was PV, oh, well that takes care of it.  So pay attention to those blood works, and keep moving, do your research, come to symposiums, watch those videos for Patient Power.  Dr. Verstovsek, the very first time I saw him, he—with the PV diagnosis—handed me a brochure said, you need to connect with Patient Power.  

Andrew Schorr:

Oh, thank you.  

Sandra Johnson:

And so that was good.  But the fatigue and all of the symptoms the terrible things that can happen with too much blood, keep moving.  That's my other advice.  

Andrew Schorr:

Yeah, you're very… 

Sandra Johnson:

…if you just sit, you're going to clot, so it's worse than if you moved. 

Andrew Schorr:

Doesn't sound good.  And you're very upbeat.  I mean, look, now they call this a cancer.  You are living with a cancer, I am too, but I don't see you as a down person. 

Sandra Johnson:

But two years ago when I first heard that I might need chemo someday I was—went into panic mode.  My daughter went into panic mode.  But we did lots of research, and the more we found out about it, the calm demeanor that Dr. Verstovsek and the whole MD Anderson staff had, made me feel we can—we can handle this. 

Andrew Schorr:

So today now, and your part of it, we connect with other people with these fairly rare conditions.  

Sandra Johnson:

Yes.  

Andrew Schorr:

We're connected with the researchers, the physicians who are moving things forward for us, so it can help us be calmer.  

Sandra Johnson:

Yes.  

Andrew Schorr:

That really makes a difference. 

Sandra Johnson:

Not afraid.  

Andrew Schorr:

Not afraid.  And we can keep running.  

Sandra Johnson:

We can keep running. 

Andrew Schorr:

So last question.  What's your out welcome for the future?  I mean, it's uncertain as far as what happens with this condition, and does the medicine keep working or you need to change or whatever?  What's your outlook? 

Sandra Johnson:

Well, initially it was I wanted to get through—I wanted to live to my daughter's wedding, which was six months from the original diagnosis, and so now I want to live until I'm 65.  And live every day fully.  Dr. Verstovsek says when I asked how long do I take hydroxyurea he says, well, until it quits working, then we'll take something else.  I said, okay.  So it's very optimistic.  I figure I can control the things I can, and hopefully somebody smarter than I am will help me with the rest. 

Andrew Schorr:

Okay.  And you've connected with a great healthcare team. 

Sandra Johnson:

Yes. 

Andrew Schorr:

And there are some around the country and around the world, and so I think that's part of the message here is get to an MPN specialist at least for a consultation.  

Sandra Johnson:

Absolutely.  

Andrew Schorr:

Okay.  All right.  I wish you all the best, Sandra.  

Sandra Johnson:

Thank you and you too.  

Andrew Schorr:

Keep running, biking, teaching those kids with music.  You have a group.  I think they do musical bells. 

Sandra Johnson:

Oh, yes, I learned how to do hand bells too… 

Andrew Schorr:

Okay.  

Sandra Johnson:

…since retirement.  

Andrew Schorr:

Who knows what's next for you.  Okay.  Thank you so much for being with us.  Andrew Schorr with an upbeat story from Sandra Johnson, who has limitless energy I would say and also I think the right attitude about keep moving and you will have a full life even if you're living with an MPN. 

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 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.