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Strategies for Managing Your MPN Symptoms

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Published on September 4, 2014

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Transcript | Strategies for Managing Your MPN Symptoms

Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Medicine, its medical staff 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:

Under the concept of an important question: Are we treating the disease, or are we treating the symptoms?

Because right now, there is not a cure for MPN. Is that a correct statement? So off the top of your head, what is the number one complaint as far as symptoms go? I heard that one.

Audience Member:

Fatigue.

Jeff Folloder:

Fatigue. Itching?

Dr. Moliterno:

It’s not the number one complaint, but it might be the most, when, when you have itching with MPN, it can be just life eroding. So I think about 10 percent of patients with MPN have terrible itching, 10 percent or less, but the burden for those patients, that 10 percent is really high, so itching, yes.

Jeff Folloder:

The reason why I asked the question about the symptoms is because from what I’ve learned, from what I’ve seen, MPNs are a progression. Things happen, and sometimes they happen in an additive effect, additive manner. Someone gets itching. Someone is dealing with night sweats. How do we monitor this?

How do we get the information from the patient to the medical providers to make sure that their issues are being dealt with? I’m going to start with you, Dr. Stein.

Dr. Stein:

So, ideally, patients will be reported face-to-face during a visit. The challenge is how can that be done if the visits are short? They feel too short on your end. They feel too short on our end.

So one way to navigate that, the efficient way is to write down your symptoms, to keep a symptom diary, to keep track of how things are looking, how things are progressing and make sure that it’s on the agenda that you’re discussing these symptoms. These are diseases that all have a unique symptom burden.

Sure, there are patients who have few, if any, symptoms, but as time passes, and if we ask the right questions, we may find that that’s more the exception than the rule. So I think the most important thing is that you communicate those symptoms to us. Ideally, we’d be asking about all of them at every visit and sometimes at our visits, we’re going through a laundry list of from head to toe about some of those symptoms. But if it’s not being addressed, address it. Be proactive about raising these symptoms.

Jeff Folloder:

Dr. Moliterno?

Dr. Moliterno:

Yeah, I would agree with that. And some of my patients, I’ve tried to use a Myelofibrosis Symptom Assessment Form. These are a form developed by Dr. Mesa who used in the clinical trials. It, it, it does help to fill out that survey, fill out the form ahead of time so that we can sort of see where your score, your self-reported score, is compared to, especially if we’re going to start therapies but also over time.

And, again, something that you can come to clinic prepared with. I think sometimes there’s frustration if, for some really chronic debilitating symptoms like fatigue and itching. If there isn’t a treatment plan that’s been effective, sometimes patients and doctors get fatigue of discussing those, right. Well, I know you’re tired, but anything else, right? That, that’s sort of frustrating, isn’t it?

Jeff Folloder:

Is there something that can be done for that fatigue?

Dr. Moliterno:

Well, I think some of the therapies we have, so that sometimes fatigue may be a, a push to try a JAK2 inhibitor or to try interferon or to even try hydroxyurea (Hydrea), because sometimes, you never know, some of these agents may actually address symptoms. So sometimes we have to, you know, instead of accepting, well, I’m getting phlebotomized and on aspirin, but I still feel really tired. Well, maybe that in itself is a burden and a burdensome enough symptom that it should indicate action on someone’s part to try new therapy.

Dr. Stein:

I think this idea of measuring symptoms, keeping track of symptoms, your doctors being aware of the symptoms is really something that’s evolved in the last decade, since 2007, this awareness of the MPN symptom burden. There have been a number of papers, tools to monitor. And now, when we look at clinical trials, the patient’s perception of relief or benefit, this is part of a clinical trial.

This is a secondary end point. So, we’re looking, of course, at the impact on the blood counts and the spleen and perhaps the bone marrow. But all of these clinical trials are incorporating the new clinical trials, these symptom assessments, your perception of how this drug makes you feel. That’s in part the basis of approval for ruxolitinib and Jakafi®.

So symptom assessment is really critical, because we do have symptom-directed therapies and, in part, that’s how symptom-directed therapies will evolve, be developed and get approved by the FDA.

Jeff Folloder:

Are there specific treatments for fatigue?

Dr. Stein:

So there are. And the therapies for fatigue, you know, the JAK inhibitors as a class, fatigue is something that’s being looked at. So there are specific tools, formal tools to measure the impact of fatigue and how fatigue changes. So if we look at all of the therapies as a class, it’s likely that the JAK inhibitors can help some patients with the fatigue.

I would say the fatigue is near universal in patients with myelofibrosis, but it’s also very, very prominent, very prevalent even in patients with essential thrombocythemia, in patients with polycythemia vera. The fatigue can occur even when the disease is considered technically lower in its risk. So it doesn’t have to be only a manifestation of a very advanced disease.

It can be seen early on in the course of ET or polycythemia vera or myelofibrosis, when there may not be other objective measures of a severe disease. So it’s part of the MPNs. It’s the most common symptom. For some people, it’s universal. And I think it has a basis. There are markers of inflammation.

We call these cytokines, chemical messengers that are messengers of the immune system that they’ve measured in clinical studies, and they’re very, very high. It’s like your body’s constantly fighting something, and that’s what it can feel like for a patient with any of these diseases, like you constantly have the flu, that worn-out sense. So I think it’s a lot something intrinsic, something natural to, unfortunately, to the diseases. 

Certainly, there are therapies that can make fatigue worse. Interferon, as we start it, we counsel about fatigue being sometimes, you know, progressive as we start. Phlebotomy can introduce fatigue because of iron deficiency. So there’s an interplay. There’s some very natural intrinsic things about the disease that lead to fatigue, and there are consequences of therapy that can exacerbate fatigue.

Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Medicine, its medical staff 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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