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MPN Patients Share Stories of Hope and Progress

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Published on May 29, 2020

Key Takeaways

  • Ruth advises people to learn as much as they can and to see an MPN specialist at least for a consultation.
  • As an essential thrombocythemia patient, Karla’s two pregnancies were treated as high risk, even though her platelet levels dropped while she was pregnant.
  • As a care partner, Josh has learned that communication is key. He asks, “How are you feeling?” and “How can I help?”

Myeloproliferative neoplasms can be diagnosed at any age. You can also live a long time with one. That’s the message shared by MPN patient advocate Ruth Fein.

In this clip from our recent virtual town meeting, host Andrew Schorr speaks with Ruth, who was diagnosed in her 30s and has been living well with multiple MPNs for more than 25 years.

He also speaks with essential thrombocythemia patient Karla Burdick and her husband Josh. They share how they navigated past their fear of Karla’s MPN diagnosis at age 28 and went on to have two more healthy pregnancies. Watch now to learn more and be inspired.

This program is sponsored by Bristol Myers Squibb. This organization has no editorial control. It is produced by Patient Power in partnership with Bag It, MPN Advocacy & Education International and MPN Research Foundation. Patient Power is solely responsible for program content. ​

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Transcript | MPN Patients Share Stories of Hope and Progress

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:

I’d like to take you to Saratoga Springs in Upstate New York to meet Ruth Fein, my new best friend. Ruth has been living with an MPN for 25 years.

At first, you were like anybody, didn't know what the hell it was. I should mention you're a medical writer, so you learn about science as well. I want to start with maybe what's normally my last question first, and that is, for people who are newly diagnosed with any of these, and you've as I've said, run the table, what do you want to say to them to help them calm down a little?

Ruth Fein:

What I would say to people who are newly diagnosed or caretakers of partners is; be as knowledgeable as you can, learn, learn, learn, but—and that's the big word, but, don't let it take over your life. It's not who you are, you aren't a patient, you are who you are, and it's a part of your life you need to deal with.

Andrew Schorr:

Clinically things are changing in treatments, combinations, research. For a long time, you didn't actually see an MPN specialist, and now you go to a super specialist Dr. Ritchie way down at the other end of New York state. You go down to New York City to see Ellen Ritchie at Weill Cornell. What would you say to people about at least having a consultation with a specialist, and what that's meant for you?

Ruth Fein:

That's one of my most important speaking points for today, is that I went through a time before they were even called MPNs. It was before all the research, it was before we had a lot of the answers, and it was before it was called a blood cancer, which somebody alluded to, "I had a blood condition."

Andrew Schorr:

Blood disorder.

Ruth Fein:

A blood disorder, yeah.  The first time that somebody mentioned it as a blood cancer some 10 years ago, I sort of flipped out and said, "No, it's not." But the good news of all that is that because they're calling it a blood cancer, it has sparked all this research and funding, et cetera. It's the most important thing to have good information, to see a specialist early even if you can't afford—everybody can't afford to travel three hours, neither can I, but I'm doing it anyway. At least have a consult, and I'm hoping that one of the best things that comes out of COVID is the telemedicine, which I'm doing also, because I saw a great doctor for years. But he had very little experience with patients like me, and there wasn't a lot of research being done.

Andrew Schorr:

Right. Well said. You're in a clinical trial. Let's talk about that for a minute. So this is a combination trial. What is the trial?

Ruth Fein:

It's my first trial actually. It's the Constellation trial, which is a combination of ruxolitinib (Jakafi) and CPI, which is I believe a protein inhibitor. I was never on Jakafi before. There are different cohorts, one is people who were on Jakafi and didn't do well, others were on Jakafi, did do well, and then there's a combination of people like me who were never on the drug form.

Andrew Schorr:

How are you doing?

Ruth Fein:

I'm great. I feel the best other than this past few weeks where I may have mild COVID symptoms. I feel the best that I have felt in six months. I went from severe fatigue for the first time in 25 years, because I've lived most of my life with very little symptoms. I mean I've had a lot of symptoms, but I sort of consider myself asymptomatic, because I didn't have day-to-day symptoms. I sort of lived crisis to crisis, and in between them I lived a perfectly normal life in my own mind.

Andrew Schorr:

I want to bring in somebody who is at the other end of the scale. So let's have our folks from another Springs. You're at Saratoga Springs in New York. Let's bring in from Colorado Springs, Colorado, and that is Josh, who's the husband and Karla Burdick. Thank you so much for being with us. You were diagnosed, Ruth, in your 30s, same with Karla. Karla, how did that diagnosis happen?

Karla Burdick:

I just went to a normal yearly routine by going to the doctor, and he wanted to check my blood work to see if everything is all fine and well. He took it and he's like, "Oh, your blood count is at 900,000. I think we should probably recheck to see whether or not there was something that went wrong with the blood test." And so the following week, I came back, and it was still in the high 800s.

Andrew Schorr:

These are the platelets way, super stratospheric.

Karla Burdick:

Yes. And so he's like, "Well, I'm going to refer you to a hematologist." It wasn't going to be another two months to get in there. And then after that Josh and I drove to the building and we read, “Hematology, Oncology,” and I'm like, "Oncology? That's cancer. What do I have now?" Because when I first went in, I'm just like, "Oh, this is just probably nothing." But the oncology word just startled us.

Andrew Schorr:

Josh, so at that time you had one child.

Josh Burdick:

Yeah.

Andrew Schorr:

And you hoped to have a bigger family, which you do now. That's the happy story we're going to talk about. But did you just feel like you were going to lose your wife?

Josh Burdick:

Yeah, I had extreme just takeover of panic and fear and wondering what was going on, because we go into that and oncology department, and suddenly they're talking about doing a bone marrow biopsy for leukemia and some strange thing called essential that I couldn't even pronounce. I never heard of it, and so I felt just this flood of panic coming over me as her husband and at that time I think she was 28, and it was very scary,

Andrew Schorr:

Now, I love the story you told me on the phone the other day of how they met, where they were in community college, and they did an elective course for karate, and they were matched up as partners and she won, right? She beat you up, right?

Josh Burdick:

Yeah, she kicked my butt, and I knew she was the one.

Andrew Schorr:

One of the interesting things that happened though is; you get over the shock of the ET diagnosis, and I know your mother had died of ovarian cancer and myeloma before that. So anything oncology was doubly terrifying, Karla.

Karla Burdick:

Yes.

Andrew Schorr:

But you wanted to have a family, and you want to try to go on with your life. So you got pregnant with your second child. Now, what happened to the essential thrombocythemia then, and how was the pregnancy treated given that you had this chronic blood condition?

Karla Burdick:

When I was pregnant with our second, my platelets actually went down. When I went to the hematologist, my platelets were at a million, but then when I got pregnant it actually went down to pretty close to a normal, it's still really high between 450, 500 is pretty high. That went down. And so I'm like, "Oh great. The pregnancy has brought down my platelets." And I was feeling pretty good throughout the entire pregnancy and so…

Andrew Schorr:

…it was treated as a high-risk pregnancy though?

Karla Burdick:

Yes.

Andrew Schorr:

So you had your second child, what's kid number one's name?

Karla Burdick:

Ethan.

Andrew Schorr:

And what's kid number two?

Karla Burdick:

Judah.

Andrew Schorr:

Judah. Okay. But then you all decided let's have a third child?

Karla Burdick:

Mm-hmm.

Andrew Schorr:

You had to have some confidence that you could do this again.

Karla Burdick:

Yeah.

Andrew Schorr:

What happened?

Karla Burdick:

When I got pregnant with Naomi, I was hoping that it was going to be the same like Judah, of just like, "Okay, maybe my numbers are going to go back down." But it didn't. It stayed at 900 pretty much throughout my entire pregnancy. Out of the three, it was probably one of the worst pregnancies of just carrying the baby all the way through.

Andrew Schorr:

Josh, you've had different times where you've been kind of on pins and needles or worry, I mean that's a medical event, a pregnancy. We'll get to the day to day stuff, but you had to be holding your breath a little.

Josh Burdick:

Yeah, for sure. And especially when with Naomi the platelet count did not go back down like it did with our other son. You're starting to feel very nervous and lots of prayer and just talking to each other through it, because it was difficult. It was a little bit scary. They didn't go back down.

Andrew Schorr:

I'm sure. Karla, did anybody tell you, "No, you can't have more children, you've got ET. Just forget about it."

Karla Burdick:

I think after having Naomi, Josh and I were like, "I don't think we can have any more after that." Because it was too much on my body.

Andrew Schorr:

With your second child and your third, prior to that was somebody advising you, "No, it's too dangerous for you to have children."

Karla Burdick:

I had some doctors who were concerned about it and just informed us that you have these risks, if you want to have another child. I had some doctors who were hesitant, but it was manageable.

Andrew Schorr:

What's your treatment strategy right now?

Karla Burdick:

Currently I am taking hydroxyurea (Hydrea), and at first when I heard about it I was so hesitant wanting to take any form of medicine. It's scary, because there's a chance of getting skin cancer to getting acute myeloid leukemia, and those are things that are just scary that I just don't want to be a part of. But my numbers just kept going higher and higher and just becoming a millionaire, like 1.8 million, and to a point to where I had to re-evaluate, I'm just saying, "Okay, my family needs me, my kids needs me, and I need some kind of medical intervention to help lower my platelets down." For us, hydroxyurea was the best for us to manage my platelet symptoms, and currently I'm within a normal range right now.

Andrew Schorr:

Let's talk about now. Josh, your wife sometimes doesn't feel great, and other days she does, and you've got three kids running around, what are the ages? 11...

Josh Burdick:

Ages 5 and 3.

Andrew Schorr:

We have three kids. I remember - they're grown now - but boy, it's a lot of work. Fortunately, you're younger than I was at the time. How do you tag team? You have to tag team anyway when you have three kids. It's a zone defense, yet some days she doesn't feel well. How do you do it? And how do you communicate about it?

Josh Burdick:

Well, first of all, when she first was diagnosed, we had to get into a routine and have it ingrained in us that we were talking about this every day and I was asking her, "How are you feeling?" Because if she's telling me the truth and she's having these symptoms, I might need to let her take a nap and rest and take our son grocery shopping, because she wasn't able to get to do some of those things she wanted to do that day. For us, communication's been really a key component of that and having a habit of asking her every day, "How are you feeling? Do you need extra help with something that you weren't able to get done today?” Just being aware of that as the partner in this.

Andrew Schorr:

Well, you two are a great couple. I wanted to bring Ruth back in. Ruth, there you are in New York, you've been living with this many years, and you're married, and you have kids who are grown now. Ruth, is there any advice you would want to give Karla and Josh? First of all to have hope but also in just family relations?

Ruth Fein:

Yeah, thanks for asking, actually. You two are so sweet. I did not do a good job given the times of reaching out and having a network around me. Now that we know so much more and there are networks like this and so many others and a research foundation, et cetera. At the time there wasn't, and my personality was such that I didn't feel I needed it. My way was to just push it aside and deal with it internally. That worked for me, but that's not necessarily the best way. The fact that you two are communicating so well and you have a wonderful partnership where he asks you—again, I didn't have a lot of symptoms, I had bad headaches, I had definitely neurological things going on. There were days that had I been asked, when I had young kids, I would have laid my head down and closed my eyes rather than suffer through a migraine headache. And the list goes on. I don't know that you need my assistance at all because I think you're doing all the right things and I wish you the best.

 

Josh Burdick:

Thank you.

Andrew Schorr:

That's sweet. Josh, you had mentioned to me that you are believers. You have strong faith. How does your faith help each of you when you have this overlay of a serious chronic condition and the uncertainty of what lies ahead?

Josh Burdick:

Yeah, that's a good question. Definitely it doesn't solve all the problems and the anxiety and things that you feel at times, but being people of faith, being able to pray and also having our faith community around us, being able to talk to people that we trust, and knowing that they're thinking and praying for us too and being willing to share in that journey has been a huge help and a huge encouragement for us.

Andrew Schorr:

Karla, I don't think you don't walk around with a sign; I have a blood cancer. And you're a young mom, are there people you share it with that you draw strength from?

Karla Burdick:

Yeah. I have a great group of women that has always come to my aid and prior to moving to Colorado Springs, I'd be like, "I'm not feeling good." I'd tell Josh that and he would help me out in any way or text my friends and say, "I'm having a lot of symptoms today. Can you please pray for me." Or extended families, "Can you guys just take the kids for a little while, while I just go to bed for the entire day because I'm exhausted?" And I just want to be able to have that same energy as they used to before, but I know it's part of my new norm of being able to accept that this is just part of being able to humble myself and say, "I need the help, and I need you guys to be able to take care of our kids and myself too so I can take care of them for as long as I can."

Andrew Schorr:

Well, I think it's going to be a long, long time and maybe as you get older they'll do more around the house and ultimately care for you in your old age, Karla.

Josh Burdick:

We're hoping so.

Karla Burdick:

Just very hopeful knowing that there's advanced medical things that are popping up left and right and it's great to be alive.

Andrew Schorr:

Okay.

Josh Burdick:

Yeah, very encouraging.

Andrew Schorr:

Do you feel pretty good for the future? Not just for yourself, but for these guys?

Ruth Fein:

I feel more hopeful than ever. It's amazing all that's happened in the last 10 years. I remember saying just a year ago that I just wanted more energy to dance at my son's wedding, which is supposed to be in two weeks, but of course has been postponed because of COVID. A year ago, I was not feeling so hopeful, and now I feel completely differently, and so much of it is because of being pulled into that circle of how much research is being done and seeing a specialist it makes all the difference. 

Andrew Schorr:

Thank you so much, Ruth Fein, in Upstate New York, Josh and Karla from Colorado Springs, thank you so much for being with us and sharing your stories I know it really means a lot for people to hear your story and take inspiration from it. 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.

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