Published on October 1, 2021
How can it be determined if a new symptom is related to myelofibrosis? What are some strategies for easing symptom burden? Lindsey Lyle, MS, PA-C, Physician Assistant and Senior Instructor at the University of Colorado Anschutz Medical Campus, explains what symptoms should be reported immediately, how to communicate with your doctor about new symptoms, and advice for dealing with the anxiety that can arise while managing the symptoms of myelofibrosis.
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Transcript | Strategies to Manage Symptom Burden in Myelofibrosis
Lindsey Lyle: Hi, I'm Lindsey Lyle, Physician Assistant and Assistant Professor at the University of Colorado Anschutz Medical Campus in Denver. Differentiating symptoms from the perspective of, "Is this related to my myelofibrosis or is it not?" is generally very difficult. A lot of times the symptoms associated with myelofibrosis are fairly vague and can be associated with other disorders. So, I think that this is a really challenging task, not only for the patient, but also for the provider.
Identifying the Symptoms of Myelofibrosis
Lindsey Lyle: I think that the best way to go about identifying if these symptoms are related to the underlying myelofibrosis is really by bringing them up with your provider and allowing them to try to tease out the potential causes for what you're experiencing. This may lead to a variety of tests for ruling out other causes that could be contributing to these symptoms, sometimes leaving myelofibrosis as the last cause, last case scenario for the symptom that you're experiencing.
Also, if your provider is very well versed and sees a lot of patients with myelofibrosis, they may be able to know that the symptom is related to myelofibrosis just based on their experience with this patient population and the frequency with which they see the symptom that perhaps you are experiencing.
Having an MPN specialist as a part of your care team is really important, especially in this situation of understanding the nuances of the disease, what symptoms may be associated with the disease, and then how best to manage these symptoms, either from a disease modifying perspective or additional supportive care.
How Can Patients and Doctors Manage and Improve Symptom Burden?
Lindsey Lyle: Anxiety and depression can really affect patients, especially from the perspective of dealing with symptoms that are very debilitating, interfering with your daily life, perhaps influencing sleep in a negative way, and it's very challenging. A lot of patients who struggle with anxiety and depression, a lot of times they try to keep it potentially to themselves. And I would say that it's really advised to speak with your family members, potentially first, and/or friends. Additionally, bringing this up to your medical provider can help, really, us navigate: “Where do we go from here? Do we need to potentially get a psychologist involved in your care, potentially a social worker? Do we need to potentially start medications to deal with some anxiety and depression? Do we need to just really be better at managing the symptoms that are causing one to feel so anxious or really sad?”
And I think that these are all very valid ways to approach the anxiety and depression associated with living with a chronic blood cancer, not only because the symptoms can cause you to feel not like yourself or not like you once did, but also dealing with the underlying anxiety of not knowing how the disease is going to maybe respond to treatment. Potentially you're at risk for disease progression. How does that play into anxiety or mood?
I think we have a lot of things at play here that really makes a lot of sense as to why patients with myelofibrosis do struggle with some feelings of anxiety and depression. But really bringing this to light, not being afraid to share this with your provider, will really help us understand what is going to be the best way to support you and to support your mood, to make as much of a positive impact as we can on this aspect of your life.