Partnering With Your Loved One to Get the Best Care

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Topics include: Patient Stories

Does care partnering improve a patient’s outcome? While research hasn’t connected with this question yet, we decided to do a little sleuthing of our own.  Patient Power founder, Andrew Schorr, sat down with MPN patient, Sylvia, and her husband, John, to ask them firsthand about the value of a strong care partner.  Listen as Sylvia shares her story, punctuated by all the times John intervened, supported, researched and facilitated on Sylvia’s behalf.  

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

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Transcript

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. Well, as we know, when someone is a patient it's not just an individual.  It's often a couple or a family friend or a whole family, and here we are with a couple, Sylvia and John Groats from La Mirada, California, southeast of Los Angeles. 

Sylvia has had quite a journey with MPNs from what seemed like ET to PV to myelofibrosis and on and off and back on, a clinical trial, and trying to do her best with what started out as platelets that were 900 and what? 

Sylvia:

985,000. 

Andrew Schorr:

985,000 from a routine blood test years ago. 

Sylvia:

Yes.

Andrew Schorr:

Okay. And this man, John, married 11 years, he's been your advocate. 

Sylvia:

Absolutely.

Andrew Schorr:

Now, we should mention, John, you're an attorney, professionally, right? 

John:

Yes.

Andrew Schorr:

You wouldn't say that to be an advocate for a loved one you have to be an attorney, but it probably has helped in your case. 

John:

Yeah. I would say it's helped.  I've learned to advocate for people as part of my profession, but I think just the desire to learn as much as you can and keep in mind that it's about your loved one that is suffering with the disease, not yourself. 

Andrew Schorr:

Right. Right.  Okay. So let's talk about advocacy. You started with sort of a community oncologist, right? 

Sylvia:

Yes, I did. 

Andrew Schorr:

And that—went okay for a while. For years…

Sylvia:

Years.

Andrew Schorr:

...you were managing the ET, right?

Sylvia:

Mm?hmm. 

Andrew Schorr:

And then things started to go south, if you will.

Sylvia:

Right, yes. 

Andrew Schorr:

Things were more serious. You had a bone marrow biopsy, you were seeing scarring, then you ended up being on a medicine, actually the medicine that I was on, that I have been on, ruxolitinib (Jakafi). It's worked for many people, but it really wasn't working for you.  

Sylvia:

The Jakafi? 

Andrew Schorr:

Right.

Sylvia:

Yes. I—when I wasn't randomized into the trial drugs, the pacritinib, the best available treatment was the Jakafi, and my platelets were already borderline, they were at 75,000 at that time.  They had dropped, dropped, dropped over the years, and so I was only put on half a dose of Jakafi because knowing that it could drop my numbers.

And, fortunately, and it was six days later I came back in for a recheck, and by then my platelets were 49,000. And Dr. Snyder said, I'm very sorry, I have to take you off the drug. You can't be on it under 50. And it was a couple of days later I got what I thought was a nose bleed, and my husband, my advocate, insisted I go to the hospital, and it went on for an hour-and-a-half, the nose bleed, and all of my numbers dropped.  

My platelets dropped to 23, and they admitted me to the hospital, gave me transfusions.  And I say fortunately, because if it had stayed at 50, I'd have still been on the drug, and who knows how much lower it would have been.

Andrew Schorr:

Right. Let's make sure our audience understands. Normal platelets, the low end would be like 140,000. So when she was down to 23,000 and then nose bleeding and hospitalization, and lower platelets for some people can be the effect of the first approved medicine for myelofibrosis and for some people with PV is ruxolitinib or Jakafi, Jakavi overseas, but you then were able to get a trial drug, pacritinib.  

Sylvia:

 Yes.

Andrew Schorr:

And that was part of, John, why you wanted her to come to City of Hope was you did research on where there was a trial, right? 

John:

Yeah. When her local oncologist said you are beyond my knowledge, we went to another facility, and this drug was recommended.  And they said they were getting the trial. But after several weeks of delays I went on clinicaltrials.gov and found City of Hope had the trial going on and suggested that she contact City of Hope instead of waiting.

Andrew Schorr:

Right. Now, the story is a little complicated.  When somebody goes in a clinical trial—and thank you for seeking out a clinical trial, where it was for your loved one, and that's so important, a team—team sport, if you will—is sometimes you're going to be randomized, as you say, to best available therapy.  Best available therapy and approved therapy was ruxolitinib. 

Sylvia:

Yes. 

Andrew Schorr:

But you had a complication that some people have. 

Sylvia:

Right

Andrew Schorr:

And so then you were able to cross over to pacritinib. 

Sylvia:

Right. 

Andrew Schorr:

But the story gets a little more complicated.  What happened after several months of doing well on pacritinib?  What happened?  What did the FDA do?

Sylvia:

The FDA pulled the drug like just in one day. 

Andrew Schorr:

They had safety concerns.

Sylvia:

Safety concerns.  And it was very disappointing for me, because within a week my platelets were in the normal range, at the high end of normal, actually. My spleen went down at the very next MRI.  

Andrew Schorr:

It shrunk, yeah. 

Sylvia:

It had shrunk.  I was feeling better. 

Andrew Schorr:

No low platelets. 

Sylvia:

No low platelets.  The only low number, which I've consistently had is I'm anemic, and—but, yes, definitely feeling better. 

Andrew Schorr:

Okay. So the FDA said, wait, all stop. 

Sylvia:

All stop. 

Andrew Schorr:

You get a call from City of Hope. I'm sorry, you cannot take that medicine anymore.  There's a safety concern.

Sylvia:

Right, yes. 

Andrew Schorr:

Then time went on for, I don't know, was it weeks?  

Sylvia:

It was a couple of months, probably.

Andrew Schorr:

Okay. You all were not happy campers. 

Sylvia:

Well, it was concerning, because it was working so well with me and…

Andrew Schorr:

Right.

Sylvia:

Yeah. 

Andrew Schorr:

The good news is the FDA said, okay, for the people who are doing well on the trial with the knowledge of the safety investigation…

Sylvia:

Correct.

Andrew Schorr:

…you could go back on. 

Sylvia:

Yes. 

Andrew Schorr:

How are you doing?

Sylvia:

I'm doing very well. I had—the complication I had on the pacritinib, and I'm assuming it was from that, was that I got mouth sores that were pretty bad. And in a period of a few months I lost a lot of weight, because I really couldn't eat.  So it was tricky with the medicine.  Dr. Snyder was able to lower my dose a couple of times, but the sores just never really went away.  So when I was off the drug, they did go away after a period of time. Now I'm back on the pacritinib at half dose, and…

Andrew Schorr:

Doing well. 

Sylvia:

…seem to be doing well. I get the mouth sores, but they're not bad.  They don't impede. 

Andrew Schorr:

So, John, you've been a full partner in this.  You're a full partner in this law firm, right? 

Sylvia:

Yes. He has the disease with me.  

Andrew Schorr:

John, what's the message, do you think, to family members as far as partnering with your loved one, so they get the best care? 

John:

Well, I think the family members know—know their family member.  They know their spouse or their loved one, and all people are different. So she occasionally might need a nudge to kind of go the, I would say, the best direction. Like when we were waiting at the other facility and it took like two months, and I'm like, no, we got to—we got to move.  You don't have a lot of time.

I had lost my father to cancer and he didn't really—he wasn't aggressive and proactive enough in searching out possibilities for his treatment, so.  She was understanding of that's where I was coming from. I know that she had a good relationship with the place that we had been before, City of Hope, and it's just kind of understanding each other.  It's hard on both parties, and you just have to—you have to just tolerate and be nice, be nice to each other. 

Andrew Schorr:

Be nice but work together for a common goal 

John:

 Yeah.

Andrew Schorr:

You want her around for a long time.

John:

Oh, yeah. 

Sylvia:

I can say that it was—we have a wonderful relationship—it was the biggest disagreement I think we've ever had was when John did insist.  Well, he said I beg you, please.  I don't… 

Andrew Schorr:

Change doctors. 

Sylvia:

…I don't want to see you wait. Just humor me, do this. Just give them a call and see if you can get an appointment.  And I felt like it was being taken away from me at that time and expressed that, I said, this is mine, it's not yours, but I was emotional about it at that time.

Andrew Schorr: 

Sure.

Sylvia:

And it was the best decision because this is an amazing place.  The care is amazing, and it's helped me. 

Andrew Schorr:

Right. So I think the point for our viewers is teamwork, right? Sometimes there [are] going to be disagreements about whether to go left or right, but it's okay to investigate it, you know. 

Sylvia:

That was it.  Yes. 

Andrew Schorr:

It would have been fine to only come here, City of Hope, where we're doing this interview, for a second opinion or wherever the major MPN center is near you anywhere in the world and then make an informed decision.  For you, it was let's see if we can get in this clinical trial, see if that works. 

Now, one last point before we go is we don't know whether this drug, as we record this, pacritinib, will be approved by the FDA…

Sylvia:

Right. 

Andrew Schorr:

…but are you glad that you've been in a clinical trial? 

Sylvia:

Absolutely, yes.  It's helped me.  I mean my spleen is better, everything is better.  I do have fatigue.  That's my reminder that I have something, and—but it's—I'm very conscientious about the trial. I know the data is only as good as the patients that follow the rules, and I'm hoping that everyone else does the same, that it's—and I'm hoping the FDA approves it.

Andrew Schorr:

Yeah. Well, here's the thing:  It's encouraging, wouldn't you agree, that research is moving forward, that we have something to talk about? 

Sylvia:

Absolutely. And you know Dr. Snyder at the time told me, we're City of Hope.  If this doesn't work, there's something else around corner for us.  

Andrew Schorr:

Okay. Well, you know where I'm coming from living with MF as well. John, thank you... 

John:

Thank you. 

Andrew Schorr:

…for being your wife's advocate and making sure she gets the best. 

Sylvia:

Thank you. 

Andrew Schorr:

Sylvia, all the best to you.

Sylvia:

Thank you. 

Andrew Schorr:

Let's hope we can do an interview like this and hear happy stories for many years, because I know you've got kids and grandkids.  

Sylvia:

Yes, I do. 

Andrew Schorr:

And you have a lot of celebrations to look forward to. 

Sylvia:

I do.  Thank you. 

Andrew Schorr:

Andrew Schorr.  We're on location at City of Hope where Sylvia and John have come, and they've gotten really good care, and we hope things go well for them for many years.  

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