MPN Patient Café: Managing Your MPN Worries

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Topics include: Living Well and Patient Stories

In this MPN Patient Café segment, panelists discuss how they manage their worries and daily lives while living with their MPN. Patient Powerâ??s Andrew Schorr is joined by three patient advocates living with MPNs: Alisa Rouse, Andi Malitz and David Denny. The panelists talk about dealing with anger, depression, grief, anxiety, and how they have been impacted personally by MPN worries.

The MPN Patient Cafe is a Patient Empowerment Network program produced by Patient Power. We thank Incyte Corporation for their support.

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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:

So the diagnosis sucks, and the heart attack is terrible, and you’re worrying that you can’t be as active as you want. But how do you go about your daily life? How do you think about things, living with PV that’s been pretty serious for you?

Alisa Rouse:        

You know, I had a good 10 years of denial and anger and depression, and that full range of emotions that we have when we’re diagnosed with a chronic illness. Now, for the past six years or so, I look at it completely different. I look at it like I have this so that I can help other people. I can give other people hope that we can live long lives, even with every clot and event, bleeding event I’ve had, I’m still alive.

Now, that’s kind of what drives me is sharing my experience with other people. When I was diagnosed, we didn’t have Facebook, we didn’t have any kind of social media or even really Internet to research. So I didn’t want anybody to be in that position I was in, where I was a child and nobody even knew anything about MPNs back then.

Andrew Schorr:

What about anger? So when you were 22-1/2, your image for what your future was going to be was very different. So have you gotten past the anger, which anybody would have with their future changed like that? 

Alisa Rouse:        

Yeah, I’m really not angry about it anymore. When I was diagnosed, we were still told that we weren’t going to live past 10 years. So being so young, I was very angry and very depressed and really had a lot of denial. I didn’t treat it for a long time. I stopped going to the doctor, I stopped doing the things that I needed to do. So in my early 20s, that was kind of when I realized I had to do something, or I was going to die. I started having—I had several pulmonary embolisms in my early 20s. I had an intestinal bleed. It was really one thing after another.

So that was when I was really forced to make a decision. I could either sit around and be angry, or I could find a doctor that knew what they were doing, and I could finally have some hope that I was going to live past the 10-year mark.

Andrew Schorr:                  

Andi, you alluded to this a minute ago where you were talking about connecting with a specialist, in your case in Chicago Brady Stein and Northwestern. What would you say to people about given these rare conditions and the variety of ways it can affect us, about the importance of people getting to the right team? 

Andi Malitz:       

Oh, it’s crucial. Because just in my experience, while I was recommended initially to a very highly respected hematologist/oncologist here in the Chicago suburbs, who certainly is known by other physicians. 

He just didn’t have the knowledge or wasn’t focusing on the MPNs. So what I tell people with anything is really go to the experts. You need somebody who is going to be proactive and somebody who is going to look at you as a whole and not just what your platelet count is.

Instead of throwing medicine at it to look at what the entire scope of the CBC means, and as a matter of fact, it just really becomes really important that we become knowledgeable of what that monthly result looks like. I know that many times I’m kind of freaking out when why are my platelets so high; I’m taking all this medication, and my other counts are dropping.

Then I’ll contact Dr. Stein, and he says okay now, let’s take a step back again. How are you feeling? What did we talk about? This is a long 26.2 marathon. This isn’t a sprint. We have to look at all of what’s been going on, and then I settle down.

But I do have to say, when we back up and you talked about living, eating, breathing, you know just because I’m asymptomatic, I am still living, eating, breathing this. Everything that happens in my life, the filter is always ET. When I get a cold, like I have now, it’s because I know my immune system is, you know, compromised from this and from the hydroxyurea (Hydrea).

I’m having unfortunately some foot surgery coming up in May, and the orthopedic specialist surgeon, he won’t do the surgery until Dr. Stein signs off on it. 

So Dr. Stein becomes part of the team, even though they are with different healthcare systems. Such was the fact when I had some thyroid surgery a couple years ago. Dr. Stein was involved up until 9:00 the night before the surgery with the thyroid surgeon, because they were looking at my platelet counts from that day. So it really becomes holistic. It’s all about everything about you.

Andrew Schorr:                  

Right. So all of us can have other conditions. You have a cold. Sometimes I get sinus infections, and I need antibiotics quick. And, Dave, I don’t know if you’ve gone through any surgery, but some of us as we get older, I developed an inguinal hernia, which it seems like 60-year-old men develop sometimes. So I need what would be very simple surgery for that, like laparoscopic surgery. But you were talking about your platelets high. 

Dave and I know we can worry about low platelets, and mine are like low partly because maybe an effect of the ruxolitinib (Jakafi) I take, or maybe otherwise for the myelofibrosis. So you’re right. I need the doctors talking, the surgeon and the hematologist. I might even need interoperative platelets. So I have to be the ring leader for this so I can get the inguinal hernia fixed, go on with my life, be an active person living with myelofibrosis and have the surgery I need, and have it be safe. So anyway. Dave, what about you, how do you go on with your life? You and I have myelofibrosis, kind of scary, can be. But how do you go on?

David Denny:     

Well, initially you figure it out. You start out by being depressed, and you have to deal with all of the—really you have to go through the grief that’s involved with realizing that you have something as serious as this. It’s a process. And I'd say that it’s kind of like if you ever saw the movie ”50 First Dates,” every day, every day, every day you wake up and you say hey, I have this serious disease, and I have to go through this process again this morning to get my head on straight. But early on I decided that I wasn’t going to let an uncertain future rob me of today’s joy.

The truth is I feel very well. Actually, I’m on ruxolitinib now. I’ve been on it for about two-and-a-half years, and it has helped me immensely. It took care of my fatigue, it took care of the brain fog that I had, and I feel great. I feel better than I knew that I could feel, and that’s wonderful. 

But it’s always there in the back of your mind—what’s gonna happen next? Every month I have a CBC, what’s it gonna show? What’s gonna happen? When should I schedule with my specialist in Cleveland again, and so on and and so forth. You’ve got to think about that. 

And it’s easy to let that get you. You just say well, we’re expecting a new grandchild. Will I get to meet her? Well, you know, will I ever get to know her? Will she remember me by the time I’m gone? Who knows? We don’t know. And you can make yourself really miserable, but you’re just borrowing trouble. The truth is right now, today, I feel great, and there [are] all sorts of good things that I can do. And I want to concentrate on doing the things I can do and enjoying life, and enjoying my loved ones and not be constantly fretting about what I might not get, which may or may not have anything to do with my MPN.

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 19, 2017