[ Inglese] Living Well With Your MPN: Maintaining Quality of Life

Published on

Topics include: Understanding

From a recent MPN town meeting at Carolinas HealthCare System's Levine Cancer Institute, MPN specialist Dr. Michael Grunwald and nurse, Erin Blackwell, share insight on how doctors are helping patients live well and maintain their quality of life. In addition to discussing quality of life, the experts touch on management of side effects, which goes hand-in-hand to achieve overall well-being.

This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with Carolinas HealthCare System's Levine Cancer Institute. 

View more programs featuring , and

Produced in association with

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. 

Andrew Schorr:

So what does “quality of life” mean? It used to be—you guys talked about survival curves, you talked about overall survival, and you had all of these cancer terms that you talk about at conventions. So the quality of life, that’s a big deal now. 

Dr. Grunwald:    

Absolutely, and so, whenever I had a new cancer patient, whether it’s an MPN patient or a patient with another type of blood cancer, my thoughts are, how do I help this patient live long? And then, how do I help this patient live well? I think the “living well” part is the quality-of-life component. And in MPNs in specific, there’s been a lot of investigation into quality of life and how patients’ quality of life evolves over time either in the absence of treatment or while on treatment for their disease.

Something that, then, in the process of incorporating into our MPN practice recently, is the MPN-SAF Total Symptom Score (MPN-SAF TSS), which is a 10-question questionnaire that I can give to patients. They circle a number from zero to 10 on 10 different scales. So patients can get a score from zero to 100, and this is their total symptom score, and you can monitor it over time.

It asks patients whether they’re having night sweats, fevers, whether they’re having trouble with inactivity, whether they’re having itching, abdominal pain, early satiety. And on these 10 different axes, we get individual scores, and we also have a composite score, which is helpful, and it gives me a sense of whether we might have to make an adjustment in a patient’s therapy over time to accommodate changes that are taking place.

Andrew Schorr:

Okay, so that’s the communication with your healthcare team. Here’s sort of a quantitative score that’s available now. So here’s what we’re gonna be doing. We’re gonna be talking about living well. We’re gonna be talking about managing the effects of the disease and the side effects of the medicines as well, because wouldn’t it be great if there’s a pill you can take that cures the disease, and you have no side effects? Even with antibiotics, you can have side effects, right?

For instance, “fatigue” is so vague. When people say they have fatigue, is that just “I need a nap,” or what does it mean?

Dr. Grunwald:    

Right, and just to be clear, I think there are two types of side effects we’re talking about here, and both are very important.

One is symptoms that are related to the patient’s disease, whether it’s ET, PV or myelofibrosis, and the second is symptoms that are related to an agent the patient might be taking, a side effect related to a drug. We’re looking for both. Both are very important and can significantly impact quality of life. Fatigue is very important, because a lot of different elements can affect fatigue. A disease can affect fatigue, medications can affect fatigue, one’s emotional state can affect fatigue, and whether somebody is anxious or has feelings of demoralization or depression as a result of their illness or as a result of the way their life looks with their illness, that can cause fatigue as well.

So “fatigue” is kind of an all-encompassing term, and I try to ask patients specific questions when they tell me they’re tired. I ask them how much they’re sleeping, how many hours they sleep at night, how many hours do they sleep during the day? Are they taking naps, and is that unusual or new for them?

I ask patients whether they’re able to work and whether they’re able to work as much, or for as long, or as effectively as they were before; and then whether they’re able to do things that they enjoy during the day, whether it’s playing with children or grandchildren, or going to social events in the evening with friends, or whatever that patient likes to do with their spare time.

Andrew Schorr:

Esther and I were living in Spain for a little while. My doctor there was an MPN doctor, Dr. Cervantes, and I knew he wanted to know “How you doing?”, but in greater detail, and I would tell him, regularly—and I was happy I could do it—“I rode my bike two miles to your office for this appointment.” Well, that told him a lot.

Dr. Grunwald:    

Absolutely. So the ability to exercise, whether it’s—for some patients, it’s just taking a walk; being able to walk from their car to the clinic can be their exercise, or being an indicator of their exercise tolerance, and so, that is a frequent question that I ask, and I think that you’re very astute to just bring that up off the bat and say that you’d like to work.

Andrew Schorr:                  

He smiled.

Dr. Grunwald:    

That would tell me what I wanted to know.

Andrew Schorr:

Right. Erin, I have a question for you. This seems counterintuitive, but maybe you can explain it. I understand there’s research now that says when you’re fatigued, as a cancer patient, exercise is a good thing.

Erin Blackwell: 

That’s correct.

Andrew Schorr:

How come?

Erin Blackwell: 

Because it boosts your body to want to do more. So it encourages your body—when you’re feeling tired and you sit around and do nothing, you’re gonna continue to feel tired. But if you get up and you’re active, that might encourage your body to wake something up that also will help you feel less fatigued.

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. 

Related Programs

The Current and Future Status of Pacritinib: An Expert Explains

Over the past year, the investigational oral kinase inhibitor, pacritinib, has been making headlines. To help patients sort through the information and to update us on the status of pacritinib, Dr. John Mascarenhas joined us from Mount Sinai Medical Center in New York City.

Published:

Advertisement
Unisciti alla nostra comunità Registrati per eventi Leggi il nostro ultimo blog
Advertisement

Page last updated on July 17, 2017