Factors to Consider When Choosing Treatment for ET, PV and MF

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Topics include: Treatment

At a recent town meeting in partnership with Robert H. Lurie Comprehensive Cancer Center in Chicago, Dr. Brady Stein helps viewers understand what should be considered when choosing a treatment plan for those with essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). Dr. Stein talks about factors such as symptoms and risk. He goes on to provide considerations for each of the myeloproliferative neoplasms (MPNs).

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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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:

What are the considerations for treatment plan? 

Dr. Stein:               

So that’s a very good question. And we could spend an hour or two answering that question. But I’ll try to simplify it and apply it to all of the entities, ET, PV and MF. And I think it’s really about two things. It’s about symptoms, and it’s about risk. And so, for ET and PV, when we’re talking about risk, right now, we’re really focused on the risk of blood clotting. The treatment to trigger, historically, traditionally, in ET and PV has been about blood clotting prevention. And most of the risk classifications or the risk assessment is about assessing whether a patient is high risk or low risk for blood clotting.

And, so, typically, a low-risk patient may be younger than 60 and may have never had a blood clot before. My issue with that, it’s still what we use, but it’s very, very generic. And so, we could apply that to any hematology patient without an MPN in our clinic. 

These are somewhat generic. So we’re really looking for a little bit more precision to identify patients who may not otherwise meet criteria but should be treated or on the flip side, patients who may have one of these risk factors but probably shouldn’t be treated. So it’s about risk for ET and PV. And, primarily, the risk is blood clotting. And for lower risk patients, we tend to be a little less aggressive. We use aspirin. And for patients with PV, we always use phlebotomy. And that’s a really important treatment for polycythemia vera. I think all of the patients with polycythemia vera know that. For ET and PV, however, it’s pretty well known. 

It’s well established that, even if you’re a low-risk patient, so maybe you’re younger, or you’ve never had a blood clot, it doesn’t mean you’re not allowed to have symptoms. And, in fact, many patients do. It’s actually more rare that, if you really ask, you find a patient has no symptoms from this. So, symptoms, if you’re a low-risk patient, but you’re really symptomatic, then, watching, doing aspirin, that’s inappropriate if you have a burden of symptoms that’s progressing. 

So that’s where the symptom component comes into it, looking at risk, looking at symptoms. You might be low risk for having a blood clot in the leg, but you maybe have unbearable itching. We’ve got to do something about that. So that’s an example of how we sort of weave in symptoms and risk in ET and PV. And in myelofibrosis, it’s really similar. The risk here may trigger a different treatment and by no means a casual discussion. But, in myelofibrosis, we look at risk to decide whether we should bring up a conversation, open a dialogue about transplantation. And that’s how we use risk in myelofibrosis.

So, of course, we use it for clinical trial selection as well. But we’re looking at whether it’s justifiable to even talk about it. Is it justifiable to make a referral? Is it justifiable to have that educational visit? So that’s how we look at things with risk and myelofibrosis.

But the same way, we go back to symptoms. And the symptoms of myelofibrosis really help us pick one of the 10 options that’s on the list. And we have to, together, make a priority about which symptoms are the worst. And is it the spleen? Is the spleen the most troubling aspect? Then, we have to focus on a spleen-directed therapy. And we might have to accept a consequence of a spleen-directed therapy, which is probably going to be anemia. It’s probably going to be lowering of the blood counts. On the flip side is the real problematic symptom, the anemia. Should we focus on a medication to boost the blood count? 

On the flip side, some medications that can boost the blood count can enlarge the spleen, blood-boosting injections. So we’ve got to prioritize, and we’ve got to make decisions. For some patients, it may be extreme itching, night sweats and weight loss. Then, we’ve got to focus on anti-inflammatories. So it’s about symptoms. It’s about risk.

And that’s how we try to choose from that large menu that you showed earlier.

Jeff Folloder:     

Lindsey, what’s the patient’s role in all of this here? What is it that we’re supposed to be doing to help you get to the right treatment plan?

Lindsey Kalhagen:             

We want you to tell us everything. We want to know whether things are going well, and/or on the opposite end of things, what symptoms you’re having. I think a lot of people aren’t quite as ready to talk about all of the symptoms or discuss that a therapy might have a side effect. So really, making sure that you’re telling us everything. We can only try to help better direct therapy if we know what the symptoms are from a disease perspective and then, also, what side effects of treatment are in terms of figuring out what’s best for you, in terms of making you feel better while controlling the disease from risk reduction.

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 August 8, 2017