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When Should Treatment Begin? Monitoring MPN Symptoms and Being Proactive

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Published on September 17, 2014

When is it time to consider treatment? How and what symptoms do you communicate to your healthcare team?  At our recent MPN Forum in Chicago, Dr. Brady Stein, Dr. Alison Moliterno and Nurse Clinician, Amy Brich, address the questions surrounding treatment considerations. The experts explore the symptoms that could indicate a need for treatment as well as other markers used to monitor the progression of MPNs. Ms. Briche speaks about the importance of communicating your observations and questions to your healthcare team in order to get the best care.

Produced in association with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

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Transcript | When Should Treatment Begin? Monitoring MPN Symptoms and Being Proactive

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:

So how do our patients out here in the audience communicate to each of you that things are getting worse, and maybe it’s time to do something? Where’s that watershed moment, where we go from having symptoms to it’s time to consider treatment? Didn’t mean to stop the room with that.

Dr. Stein:

So when do you consider treatment is the question, and there are some situations where the treatment decisions are immediate. In most cases, it’s not. In most cases, it’s a conversation. It’s a dialogue. We have a couple different opportunities to discussion in the treatment approach and what might be right for you. So there are some things that are very, very standard. For polycythemia vera, we’ve talked about phlebotomy and for some patients, that can be immediate. And the initiation of aspirin, this is helpful in the lower intensity therapy. So those decisions are more straightforward.

The consideration for treatment, we’ve discussed earlier on how we approach this. I think it’s in part based on for the ET and PV patient vascular risk factors, also symptoms, for the MF patient, how much those symptoms are impacting you. So we have to balance the subjective and the objective when we make these treatment decisions.

If we can feel the spleen, but it doesn’t bother you, then that might not be an indication to start a spleen-shrinking therapy. So a lot of this is feedback. It’s a dialogue. We need to hear from you about the impact on your quality of life that these symptoms are having. That’s often the trigger for treatment.

Sometimes it can be a blood count. But in many cases for myelofibrosis, the, for the overwhelming majority of patients with myelofibrosis, the treatment need is based on the symptoms. It’s which is the priority. Is the priority that we try to do something to relieve from symptoms of anemia and the burden of transfusions? Is the primary goal to address itching and fatigue? Is the primary goal to address the spleen?

So I think a lot of it has to do with priorities, what’s most relevant to your case. That’s the trigger for treatment. We can’t think about a treatment before we’ve seen you and place a stent. We have to make our decisions in the room. We can’t really make these decisions before we’ve seen you. So the thing about the MPNs, in many cases, there’s indolence.

We’re having long-term relationships, and, in most cases, we can discuss treatment. It’s an evolving discussion. It’s not something where you come in and say, where we come in and say, you need to be on interferon; here’s the prescription. There’s many dialogues, many opportunities to revisit. There’s a question.

Dr. Moliterno:

Well, I would also just like to make a comment too that I think many of us in this room have experienced as doctors and nurses can relate to, that you’re going to have these diseases a long time, and sometimes it’s sequential clinical trials in an individual patient, and that none of these decisions ever close doors on other treatments.

So, again, if your disease is quiet in terms of symptom burden, we may agree that this is how we’re going to manage it. And then if some symptom becomes problematic or we want to, well, why don’t we try interferon just to see if it’ll address fatigue or itching. But, again, I’ve had patients on interferon, and we do that for a few years.

And then, if we realize well, maybe I’m having side effects with interferon, we’ll stop. And so, I think it’s an evolving, this partnership that you have. And if things are really going terribly and we really need, are concerned about disease transformation to leukemia, well then maybe we’ll push someone towards a transplant once we evaluate risks and benefits.

But I think many patients will have different approaches to their disease through, over the decades. And so it’s okay to make an empiric decision with your doctor. Well, we’re going to try ruxolitinib (Jakafi®), because I think maybe my fatigue is, would be really addressed by that or we’re going to try peginterferon alfa-2a (Pegasys®), because maybe my itching will really respond to that. So I think these are the…

Jeff Folloder:

There isn’t a one size fits all.

Dr. Moliterno:

And even in a patient, right. It isn’t like oh, you’re on interferon, and now we can never do whatever or we can, we can’t, we can’t go back and come off of it, right. It’s not like you commit to it. Sometimes we do do sequential trials in a patient to see what’s the best fit for their symptom burden.

Amy Brich:

And it’s being honest with your doctor too, I mean, and saying at your visit, you know, no, this isn’t working or telling the nurse. I mean, sometimes patients tell me things that they don’t tell the doctor. So it’s, and it’s not feeling that you’re bothering somebody with your questions. I mean, it’s always important, especially when you’re on drugs that have side effects, in addition to your having symptoms from your disease.

If you don’t tell us, we don’t know. So, you know, coming in and saying, hi, how are you; I’m fine, but then you go to see me and it’s like you’re doing your phlebotomy for 20 minutes or 30 minutes. And it’s a list of questions, and it’s like did you tell the doctor this? Well, no, because it was a short visit, it was this, it was that. You know what, it’s, you have to be actively participating in your care too. 

And if you don’t, you know, we can only do so much too. So it is a constant dialogue, and you are never bothering somebody. I mean, it’s your visit. It’s your time. It’s your life. So you have to take an active role in it too.

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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