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Heidi’s MPN Story: How I Advocated for Better Care

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Published on July 9, 2015

Diagnosed in 2008 with polycythemia vera (PV), Heidi Cascarano was certainly surprised. She had gone for a routine physical and left with a cancer diagnosis. Heidi shares her story of how she coped emotionally with her diagnosis and why she decided to be more proactive in her care. After seeking out an MPN specialist,and learning that the polycythemia vera had progressed to myelofibrosis, she advocated for better treatment, which led to an improved quality of life and positive hope for the future.

You're a FANTASTIC resource and I share info with groups online, open up conversations with my oncologist and GP and send links to my adult children to help them understand. You guys are earth Angels.

— Annie, from UK, online MPN meeting attendee

Transcript | Heidi’s MPN Story: How I Advocated for Better Care

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. 

Carol Preston:

Hello everyone and welcome to Patient Power.  I'm Carol Preston, and joining me to talk about MPNs, which—wide?ranging discussions at ASCO this particular week is Heidi Cascarano of the Chicago area who started out with one MPN, polycythemia vera, and then it progressed to myelofibrosis. 

So, first of all, Heidi, welcome, and I must ask you, how are you feeling?  You look wonderful. 

Heidi Cascarano:

I am actually doing very well. 

Carol Preston:

So you were first diagnosed in 2008 with PV.  Is that correct?  

Heidi Cascarano:

Yes. 

Carol Preston:

Tell us how that came about, the diagnosis. 

Heidi Cascarano:

Well, I was just having a routine physical, actually because I was losing my health insurance, and I went in and got diagnosed.  I was fortunate to be diagnosed at a great time, if there is such a thing with a blood cancer, but it was just a couple years after the discovery of the JAK2 mutation.  So I—it was a definitive diagnosis right up front. 

Carol Preston:

All right.  And what did that mean?  So you did you launch into treatment right away?  How did you and your doctor work it out? 

Heidi Cascarano:

I did not.  I went to a local hematologist, and he took a watch?and?wait approach to my treatment.  I got phlebotomies every couple months to keep my hematocrit and hemoglobin at a, you know, a normal level.  That, of course, has a lot of side effects just from having phlebotomies all the time.  And I had terrible fatigue.  I had an enlarged spleen, itching and, you know, several—several symptoms from the disease.  

Carol Preston:

But here you were in watch?and?wait 2008 seeing a local hematologist.  So tell us what happened after that.  

Heidi Cascarano:

Well, I started noticing that I was having some different symptoms.  My spleen was getting very big, and I asked for some additional tests, and there were some signs that I might be progressing to myelofibrosis.  So I found an expert at Northwestern and got myself in there pretty quick for a bone marrow biopsy.  And I had started progressing.  So I was fortunate to catch it very early before it got too far along. 

Carol Preston:

So you were your own patient advocate.  You basically took hold of the reins and moved in a different direction.  

Heidi Cascarano:

I did.  And I believe, really believing in advocating for yourself as a patient and being aggressive with treatment.  I feel like I—if I had been treated with a drug therapy earlier, I might not have progressed as quickly, but I was still fortunate to catch it very early and begin a drug treatment right away when I started seeing the expert.  

Carol Preston:

And you're doing a combination therapy right now?  

Heidi Cascarano:

I—I am.  Actually, I have a very unique situation where I tried two different medications individually, so I knew how I responded.  My doctor knew how I responded to the medications, and I knew what the side effects were from the medications.  I knew that my liver and kidney function were, you know, pretty good even on the medications, and I also knew how they affected my blood counts.  

So I pushed very hard to—to take the two medications together, which he did reluctantly allow me to do.  But it is—I understand his hesitation, because it isn't common—the combination is not a common treatment, so I can understand his conservative approach. 

Carol Preston:

So was this—this was the patient helping the doctor determine the—determine the treatment? 

Heidi Cascarano:

I think we—we made the decision together.  It made sense to him too because he could—he could see the benefits of each drug with me, and we monitored it very closely with really frequent blood tests and everything to make sure it wasn't causing any problems. 

 

Carol Preston:

So we've talked about the—the two MPNs.  We've talked about treatment, and your becoming an advocate for yourself.  Let me ask you about the reaction.  You and your family, a fairly rare, a rarer cancer, many people haven't heard of it.  What happened when you heard the news that you had this cancer? 

Heidi Cascarano:

Well, actually it was very scary when I found out.  I had just moved back to Illinois, and I was alone here.  I was not married, all my family was in California, and I just lost my health insurance, so it was a very scary time with some of the misinformation that's out on the Internet that portrays it as a death sentence, and…

Carol Preston:

Wow.  

Heidi Cascarano:

…you know, so I did go through a lot right away.  But it—it encouraged me to really do research and really understand the disease so that I—you know, so that I could understand the long?term outlook and not be in a panic.  

So actually my faith played a huge part, a huge part in dealing with that.  When you have to face your own death, I mean, faith definitely got me through those early days when I—when I really didn't have any support around me. 

Carol Preston:

But the research helped. 

Heidi Cascarano:

It did. 

Carol Preston:

Your faith helped. 

Heidi Cascarano:

It did. 

Carol Preston:

You are now married. 

Heidi Cascarano:

I am. 

Carol Preston:

To a wonderful man.  

Heidi Cascarano: 

Yes.

Carol Preston:

And so all of your efforts—you know, the harder we work the luckier we get.  It sounds like that's what happened.  You're in treatment.  You're feeling well.  Tell me about your quality of life.  Do you feel that you're functioning, doing everything you normally would do? 

Heidi Cascarano:

I do.  I work full?time.  The quality of life is so much improved since I've been on the drug therapy.  I know that some people are afraid of the drug therapies, because they can cause fatigue in some people and other side effects, but I am very fortunate to not have any side effects right now and able to keep on going and working like I have been.  

Carol Preston:

Well, Heidi, certainly a lot of lessons for all of us, regardless of the cancer with which we are living.  Advocate for yourself.  Do some homework.  Find an expert.  

Heidi Cascarano:

Yes.  

Carol Preston:

Which is what you did and continue living your life as well as you're living.  Heidi Cascarano, thank you so much for being with us today.  

Heidi Cascarano:

Thank you very much for having me.  

Carol Preston:

I'm Carol Preston, and remember that 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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