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Coronavirus Coping Strategies for MPN Patients

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Published on May 4, 2020

Key Takeaways

How are people who are living with myeloproliferative neoplasms (MPNs) dealing with the coronavirus pandemic? In this episode of People Are Talking, four MPN patients from around the United States share their coping strategies and offer advice for staying socially connected while physically distant.  
 
Julia Olff is embracing fresh perspectives, nature walks and new technology. Ned Weinshenker has been able to continue his participation in an out-of-state clinical trial by making some adjustments.

Andi Malitz is limiting her time outside of the house and participating in online social events. Nick Napolitano and his wife created a schedule for themselves and their two young children. They are also limiting their media consumption. Watch now to learn more about healthy ways to cope from MPN patients. 

 

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Transcript | Coronavirus Coping Strategies for MPN Patients

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.

Recorded April 23, 2020

Julia Olff:

Hi, and welcome to Patient Power's Program, People Are Talking. My name is Julia Olff, and I have secondary myelofibrosis. I've been living with it for 12 years, and I'm based in New Jersey.

Today we're talking with other MPN patients and we're focusing on having an MPN during a COVID-19 pandemic, and I hope each person will share their experiences today with you all. Thank you for listening. Ned, can we start with you?

Ned Weinshenker:

Sure.

Julia Olff:

Just, introduce yourself, tell us where you're from, and a little bit about your diagnosis?

Ned Weinshenker:

Yes. I have primary myelofibrosis. It was diagnosed about a year-and-a half ago. I'm 77 years old. I live in Providence, Utah, but I'm currently enrolled in a clinical trial, the MANIFEST trialwhich is taking place at UCLA. So, for the last year I've been traveling down there for treatment.

Julia Olff:

Thanks, Ned. I want to come back to you and hear more about that, I think other people will be interested in hearing how you're able to participate in that trial given the distance and the need to socially isolate. I see Nick up on screen. Nick, will you introduce yourself to us?

Nick Napolitano:

Sure. Hello, everyone. Nick Napolitano. I have polycythemia vera, I was diagnosed a little over three years ago, in my mid-30s. I am living in Westchester County, New York, and looking forward to the discussion.

Julia Olff:

Then next we have Andi. Please introduce yourself.

Andi Malitz:

Hi, everyone. I'm Andi Malitz, and I live in the Chicago suburbs. I actually have essential thrombocythemia, and was diagnosed about 17 years ago, when I was 46. I'm not going to do the math.

Julia Olff:

That's good enough to give us some background. Thanks, Andi.

I wanted to ask each one of you to start out sort of how you're feeling about having an MPN, today in particular, given the pandemic, and what you're doing to cope, or how you're coping in general? Andi, will you start us off?

Andi Malitz:

Sure. It's been scary enough just having a global pandemic. Of course, we've never expected this. I find myself, being in my early 60s, and then having an MPN, definitely someone who is considered more high risk. So, as such, I am very strictly adhering to the shelter-in-place rules that our governor has put in place.

If I do need to go out, which I'm limiting myself to, one time a week for groceries, trying to do curbside, trying to just pick up what I need. I, of course, wearing masks and gloves and lots of hand sanitizer. Trying to go when I can during those really early shopping hours, when they do let older folks and some autoimmune folks into the store ahead a time.

So, I'm just trying to really heed the warnings. In terms of—I've had to cancel some doctors' appointments, or some were non-essential. I am coming on eight weeks of not having my monthly blood test, so I am going to, next week, go get blood test. Luckily I feel well, but I do need to really stay on top of that.

I'm also recovering, six months ago, from some ankle surgery, so I just have had to reschedule my final, maybe, hopefully final, post-op appointment X-ray. Six weeks ago, I was offered telemed, but we decided it would be better, let's just ride it out, and we're going to attempt it in mid-May to do X-rays and whatnot. But really being very careful.

Julia Olff:

Yeah. I'm glad to hear it. It sounds like you've taken social isolation very seriously, which I'm glad to hear, and somehow have a lot going on. A lot that you have to manage, given the surgery that you had. For many of us, the appointments that we now have to re-plan, that will be on your list.

Ned, you started to talk with us about your experience on a trial, and what that's like today. Would you share more about how you're able to participate at a distance?

Ned Weinshenker:

Yeah. For the first eight or nine months of the trial, I had to go to UCLA every three weeks. Starting in January because I somewhat stabilized, it stretched out to every six weeks. The last time I was supposed to go was April 7. I didn't want to get on a plane, and they agreed to let me do additional tests here locally, in Logan, Utah, and to have an evaluation by my hematologist here, to do the ECOG and other test.

Then we sent all of that down to UCLA, and they were able to send me the drugs. It's an oral drug, so it's not a problem in terms of administration. All of my diaries, I copied and sent them down to them, so they have all the data that they need for the clinical trial.

My next scheduled visit is May 17th, and that includes an MRI. We're in discussions of whether I can skip the MRI, or whether I have to come down there, or whether I can get the MRI here.

But I think the important thing is, I have been the person trying to bring everyone together to make sure it happened. I double-check on everything, with the transfusion unit locally, with my hematologist locally, and the people at UCLA. I don't leave anything to chance. I double-check on appointments, I double-check that they've sent the information. I think that's a really important thing, especially in these times.

I do go weekly to the hospital to get a blood test, because I am transfusion-dependent, but I'm very careful going in. You walk in they want to, they give you sanitizer, they put a mask on you, and they give you sanitizer again at the transfusions unit where I get blood, I mean, where I get the blood sample. Then, when I go out, I ask them for more sanitizer, and I use a tissue just to press the button on the elevator. I mean, I try to do everything I can.

The only thing that I'm doing now outside are going to the clinic and taking walks. I try and walk up to 10 or more miles a week, so I go out to local areas where there aren't too many people. I just walk around neighborhoods, or what have you.

One thing that I'm concerned about, there are reports that Jakafi, which is ruxolitinib, which I'm taking for my MPN, it looks like it may be used for COVID-19, particularly for moderate to severe cases, because it deals with the cytokine storm that's killing people.

My concern is, if it turns out to be positive, which'd be great, is there going to be a problem with supply to me, just like the issues with hydroxychloroquine (Plaquenil) and chloroquine (Aralen). It's not a drug you can stock up on, but it comes from a specialty pharmacy.

So, that's a concern. I mean, I hope it does work for these patients, but it's a concern for me and other patients who absolutely need that drug.

Julia Olff:

Sure. Well, thanks for sharing all of that. Nick, how are you coping at the current time?

Nick Napolitano:

I mean, it's definitely scary, it's concerning. I'm concerned, I have two young kids that we're homeschooling at this point. We, like Andi and Ned, are adhering to the social distance thing and staying home guidelines. So, we're just going for walks in the afternoon, we wear masks. So, really, just trying to be strict about that.

I guess having an MPN I fall into a higher risk category. I worry most about how does my body deal with fighting an MPN, and then, if I get the virus, can it do both? Would it be more severe if I got it? So, that's very concerning to me.

From a symptom standpoint, I've had increased fatigue over the last couple months. Maybe it's my kids that we're dealing with from 6 o'clock to 9 o'clock. I really just, I start to feel it at around noon, and I just, it’s a struggle to get through the rest of the day. I don't typically feel it this consistently, and it's really been over the course of the last month-and-a-half, I would say, that I've felt it almost every single day.

I've had to cancel an appointment; I just didn't feel comfortable going into the hospital. I see my doctor at New York Presbyterian Hospital. It was right during the height of it, and I just didn't feel comfortable going. I do have one in a couple weeks, and I'll have to get blood work, there's no way around that. So I'll have to go in there.

We have a telecall scheduled for next week, kind of just talk through that, whether I go locally, or do I go into the hospital to get it?

So, just overall, it's concerning. My wife who is fantastic about not wanting me go out to the grocery store. Although, I will sneak out, because it's tough for me to send her out there in the war zone and not contribute in that way, but she's been very, very good about trying to bear the brunt of that.

Julia Olff:

You can cook the food. She can shop for it, and you can cook.

Nick Napolitano:

Yeah. I can clean and do the laundry, all that stuff.

Julia Olff:

Yeah. Andi, what about you? I know you talked about the practices that you're following through, but any other thoughts about, just, how you feel, or how you and your family, or your support network are coping?

Andi Malitz:

I'm single, and I do live alone, so I'm my support network. I'm used to it, especially after going through the recovery from the surgery six months ago. I was just getting back to some sense of normalcy. I actually am retired, but had just started a part-time position, office support at the high school. Of course, that took care of that.

Julia Olff:

Yeah.

Andi Malitz:

So, walking, a lot of FaceTiming. My support network, my family, my friends, everybody's nearby, and we're all in the same boat. There have been a couple drive-bys, where you reach your arms out and want a hug.

Julia Olff:

Just want to see them at least. Yeah.

Andi Malitz:

My nieces and nephews...

Julia Olff:

...yeah. Do you talk with any other MPN patients? I'm sorry to cut you off.

Andi Malitz:

No.

Julia Olff:

Do you know any other?

Andi Malitz:
Just on Facebook, I am part of a couple of groups, and I do visit regularly and read what other people are posting. I actually had just read an article in several new sources yesterday which was a little discerning and scary, and I posted it to one of the sites. They're finding, in many of the COVID patients, blood clotting issues.

Julia Olff:

Yeah. I have read that.

Andi Malitz:

Right. That was very concerning to me. I'm JAK2-negative, and CALR-positive, so I've been very fortunate in that if I had to have ET, that I had tested that way and that I'm presenting healthy after 17 years still.

My platelets do run high, but we continue with the hydroxyurea (Hydrea). Again, I said that the monthly blood test, and I do speak regularly via our medical system's portal with my hematologist, and he hasn't indicated to change anything right now, or any need to telemed right now.

Again, knock on wood, I'm feeling well, and Nick, to your being tired, you look like you're a young guy, you're probably used to working full-time and being on the go. I mean, I'm finding it almost possible to fall asleep at night because even retired I'm busy during the day, and when you're not busy it's hard to get your—You get more tired from doing nothing, basically.

So, it is hard, and I think with seasonal allergies starting the last couple days, and the weather, have been headachy and burning eyes, and then you start getting really nervous and whatnot, but I'm good today.

Julia Olff:

Thank you for sharing that. Anyone have any specific tips on either how they're coping emotionally or what they're doing during their day to stay up-to-date on what's happening?

Ned Weinshenker:

Want me to go ahead?

Julia Olff:

Ned, please do. Yeah.

Andi Malitz:

Yeah.

Ned Weinshenker:

Yeah. Well, my wife is doing the shopping about once a week, and we're real careful when we bring things in. But what I'm doing is I'm reaching out to people that I haven't been in contact with for a while, and using videoconferencing and putting people together who haven't seen each other.

I had a conference last week with a friend that I see regularly, but another friend from—these were from high school that I just reconnected with. I put them together, and they were delighted with it.

Julia Olff:

Oh, nice.

Ned Weinshenker:

They had not other for 50 years. So, doing a lot of that. I am retired from a full-time job, but I still do some consulting, and all of it's been on videoconference. I'm on a number of non-profit boards and we've been having board meetings by conference call. So I'm staying busy.

Julia Olff:

That's great.

Ned Weinshenker:

I mean, not every day, but reasonably busy.

Julia Olff:

So you're keeping the brain busy.

Ned Weinshenker:

Yeah.

Julia Olff:

Andi was just talking about not the body, but you're keeping the brain busy. Yeah.

Ned Weinshenker:

Yeah. Well, the body, I go out and walk to get my exercise, or hike when I can. But I do live in a county that there's 130,000 people, and we only have 40 cases total, and the last four days have been zero new cases. So I think, for the moment, it's pretty safe where I am, but you never know. I mean, it just takes one person.

Julia Olff:

Yes. Yes.

Ned Weinshenker:

You still have to be super careful, but the probability is pretty low of catching it here. Especially if you're distancing.

Julia Olff:

Are you in touch with any other MPN patients?

Ned Weinshenker:

Actually, that's interesting you brought it up, because I had an interview with Jennifer, and I can't remember her last name, also from Patient Power, to do another interview later on. She, yesterday, put me in touch with another patient in Toronto, and we are going to have a video conference this afternoon.

Julia Olff:

Oh. How nice.

Ned Weinshenker:

Yeah, and there's another patient that I've emailed with, that's on the same clinical trial at UCLA with me, and we communicate every once in a while.

Julia Olff:

Great. So you're like pen pals with current technology. That's great.

Ned Weinshenker:

Exactly.

Julia Olff:

Well, I love that you're using the time to reach out to other people. My niece, who's pregnant and in New Mexico, and I'm in East Coast, has invited me into an app called Marco Polo. She called it Snapchat for older folk, and I'm enjoying it because it's sending a visual voicemail message. I am trying, like you Ned, every day to think of who I have not reached out to and kind of use the time.

Ned Weinshenker:

Yeah.

Nick Napolitano:

Just to pick up on that point. Through Patient Power and some other advocacy groups, I am lucky enough to have a network of MPN patients where I can text and email. Over the course of my diagnosis I would just reach out, but now, more than ever, I've been reaching out and just to see how they're feeling, and they check in on me, and just bounce things off them.

Like, "Kind of feeling this," the fatigue, "I've never felt this before, are you going through the same thing?" It's been unbelievably valuable to have that network to just reach out to and bounce things off of.

It's been great. I think we're a small community, the MPN community, relative to other cancers, so as much as we can communicate and talk, the better.

Julia Olff:

I appreciate that. I have also relied on Patient Power Programs during this time, and have watched a number of them. I'm always very, very appreciative, especially of interviews with MPN experts, and learning more about what they're learning about the disease.

Ned Weinshenker:

Oh, I agree. I've watched many of those, and I'm also on a committee at the MPN Foundationm and we had a meeting recently talking about a network to follow the research that's going on and predicting prognosis for these diseases, because right now it's very, very difficult, because no-one fully understands what all the mutation data means.

I've actually created a spreadsheet of my own data of from multiple bone marrow biopsies, and I'm trying to make sense of it and look at the changes over time, of the mutations.

Julia Olff:

You're talking about of your own bone marrow biopsies you're looking at then?

Ned Weinshenker:

Yeah. Yeah.

Julia Olff:

Interesting.

Ned Weinshenker:

And I do a lot of reading up. My background is a chemist, and I worked in the pharmaceutical industry for years and involved in clinical trials. So I kind of have an out-of-body experience looking at my own data from a clinical standpoint.

Julia Olff:

I so understand that. Yeah. Yeah. Go ahead.

Ned Weinshenker:

I do all kinds of graphs and stuff that I show my doctors.

Julia Olff:

That's great, and that's another way you're empowering yourself, with all of your knowledge about yourself.

I was a hospital administrator, and I'm a health educator. So I, like you, but with a slightly different mindset. I'm always thinking about the patient experience, the process, what it's like to be in the clinical setting, and I'm always thinking about ways of making it better. But like everyone else, I have put off all my appointments. For me, thankfully, my next appointment isn't until late June with my MPN expert. We'll see what happens by then.

For me, and perhaps others, I feel like one of the many benefits, I suppose, of being older, one is being here, but two is getting some sort of sense of perspective of, "This too shall pass." Hopefully we'll get to the other side. Things may be different, but we'll get there.

Anybody have any final thoughts, or not final thoughts, that sounds too morbid, any words of wisdom, or sort of, "This is a thing that's really been helping me cope every day." I heard walking, for sure. I'm been doing that every day, taking a walk, and I'm actually in the countryside hiding out from Jersey City that is not so fortunate in terms of the data. Anyone?

Andi Malitz:

I've been terrible, honestly. Every day is a different day, or non-day. Sometimes I don't even know what day it is. Some days, there's too many Facebook days, too many playing my little solitaire casino games on my iPad. Other days, I'm reading an entire book, or I'm going for a walk.

Or this week, there have just been a lot of different Zoom experiences. I participated in a cooking demo, I attended, that the library put on with a chef. I had a little happy hour, last night I was invited by a group of ladies that I know. Tomorrow night a cousin of mine in Des Moines invited me to a happy hour and some type of remote concert through, I don't know how she arranged it, but—So this is a busy Zoom week. We'll have to see what next week brings.

It's a lot of also making things happen. You can't just keep sitting around and waiting for things. I'm actively looking for opportunities to keep my brain involved.

Julia Olff:

I hear you. It's hard to maintain a sense of the schedule of the day, and I am starting to get to that point of, "Is it Wednesday? Is it Thursday?" I feel like having an MPN, and like others, it sounds like, Andi, you've experienced this, I'm sort of early retired in the sense that I only work very part-time, and I was a full-time worker, traveler, et cetera. So, I've learned how to organize my day and maintain a routine, but I still think it's really hard now.

For those of you who are with a group of people, I have my 86-year-old mother living with us, going on five weeks. Haven't lived with mom since I was 21, and it's a different ecosystem in the house now, I would say. There are the ups and the downs of learning how to all be together under one roof. Yeah.

Nick Napolitano:

I would, just to pick up on the schedule thing, like everyone else, Karen and I were reacting to COVID and the impact. We just took a step back one week and said, "We need to institute some sort of schedule." We both work, we have two kids, and we're just kind of chaotic, so that was a blessing. The kids understood the schedule. A lot of times it got blown up, but at least there's a foundation of organization.

We shut the noise off. All these stations are having COVID updates 24/7, and that did a lot for our psyche, to be quite honest with you. So, it was shutting the noise off, maybe get updated towards the end of the night. We have instituted every other day one of us, or every day, one of us would spend an hour in the morning to do whatever they want. Whether it was working out, whether it was sleeping late, whether it's going for a walk, or just reading, whatever it was there was absolutely an hour that we'd lock up on schedule.

So those are some of the things that we changed, that we weren't doing in the beginning but we changed, and it's made things go a little bit easier the last few weeks.

Julia Olff:

I love the giving each other time idea, to do what you want to do so that you're together, but you also have alone time. That's so smart of you that you guys figured that out. Kudos. Any parting thoughts from anybody else about their experience?

Ned Weinshenker:

Just to reiterate. Reaching out to people that you haven't had contact with for a while, and connecting with them now that we have all of these free videoconferencing technologies that work really well. For me, it's been a real pleasure to do that and uses up the time in a productive way, in a funny way, actually. I would encourage people to think about people that they haven't seen in a while, or people that they normally get together with.

I have a group of four other men that we typically go out to lunch every four weeks and talk politics and other things, and now we do an every two week Zoom meeting on Monday at lunchtime. So, we keep it going.

Julia Olff:

Well, I appreciate that everyone was willing to join and share their experiences, and I hope you all continue to stay well and do the best you can to stay well, emotionally and physically, and keep yourselves and your families healthy, as healthy as you possibly can. Thank you, again, for participating. Thank you out there for those of you who have been watching. We hope this was helpful to you. Have a good day!

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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