Tuning In to Your MPN Symptoms: Monitoring Disease Progression

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Topics include: Living Well and Understanding

How do you know if your MPN is progressing? Will it show in your blood work or will symptoms increase? Physician assistant, Lindsey Kalhagen, discusses progression and what might indicate a need for an adjustment in treatment. Although it can be difficult to differentiate side effects from medications and symptoms, it’s important for patients to monitor physical changes that could signify disease progression. Watch now to learn how paying close attention to symptoms, observing changes, and communicating with your provider can improve outcomes.

This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

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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. 

Jeff Folloder:

Lindsey, I’ve got a question from Leslie here that I’m going to direct to you. How do you know if, when your disease is progressing? Will you have more physical symptoms? Or does it show in elevated numbers on your blood test?

What’s the thing where you go, okay, things are moving fast now?

Lindsey Kalhagen:             

That’s a really good question. So, typically, we see that things progress more gradually. So it’s not always going to be something that happens overnight. So part of it is symptoms. So talking about are you developing new symptoms or progression of your symptoms? Is your fatigue dramatically worse where we’re worried about anemia worsening or changing into something? Are you starting to now have drenching night sweats or unexplained weight loss that could suggest the spleen is enlarging? So I think really thinking about, from a symptom standpoint, in terms of prompting. 

And we always say, if you think something is different, we want to know. Best case scenario, we can say your blood counts are fine. This isn’t likely related, or something else could be going on versus being able to also then, on the other side of things, look at blood counts that usually, if things are starting to shift a little bit, we start to see gradual changes in labs.

And that’s why we always talk so much about making sure that you’re monitoring how you’re supposed to and that we’re really following labs that we’d rather try to change something when we can or see it sooner versus having something change over a number of years where someone was lost to follow-up. So both in blood counts and symptoms.

Jeff Folloder:     

So, a follow onto that, not just a symptom inventory, but you’re doing these blood tests and diagnostics. That leads us back to my least three favorite words, bone marrow biopsy. How often do I have to have one of those?

Lindsey Kalhagen:             

So, like Dr. Stein had said, we sort of do it based on, again, obviously, if there’s concern for disease progression from a blood standpoint, we, typically, recommend repeating a bone marrow biopsy. Or if we’re starting to see that labs look like they’re dramatically different from where they’ve been in the past, or that there’s a suggestion of PV starting to look like myelofibrosis because of blood counts or changes in things, we’d say let’s repeat the bone marrow biopsy. 

Or if we’re going to change treatment, sometimes, depending on what that is, if we know that could impact things, then, we want to look again and see what do things look like. 

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 September 20, 2017