MPN Therapy: Advice and Guidance for Making Treatment Decisions - 3 | Transcript | Myeloproliferative Neoplasms | Patient Power


MPN Therapy: Advice and Guidance for Making Treatment Decisions

That, like in Samantha’s case, would be catching those mutations earlier on, without any invasive procedure. But then, the question will be again, what do I do with these mutations? Now, you have three and you had one, but you are about the same as otherwise, you were, you did not change to myelofibrosis, because you had three mutations versus one, or you didn’t change, if you do the bone marrow biopsies, to myelofibrosis, just because there are more fibers. I highlighted that fact. You have to have other clinical factors that you call it a transformation.

And only when you transform, then you actually do this testing at this time and age, because that is when you can justify the testing, You cannot justify the testing every year for bone marrow even, and the molecule testing. Who’s gonna pay for it, because why are you doing it if there’s – what are you gonna do with this result? And my answer is, unfortunately, nothing, really. I can’t do anything about it. So we do it only when it’s clinically reasonable to do it.

Andrew Schorr:         

Wow, Nick, you got quite the answer...

Nick Napolitano:        

...that’s why I asked it. There you go.

Andrew Schorr:         

And this is what—Dr. Verstovsek goes around the world. He talks to physicians who see MPN patients. They have debates about this, but also he, from his experience. Nick, let’s talk about your situation a little bit. So, okay. So you’re taking all this in, because here’s somebody decades down the road now, Samantha, in Dr. Verstovsek’s point of view on it, and you’re seeing some change in yourself. So, how will you have a discussion with Dr. Heaney, your doctor at Columbia, about whether something else is needed? How you gonna approach this?

Nick Napolitano:        

Well, we’ve talked about it. I saw him last month and we talked about it a little bit, and Dr. and Samantha have talked about it, where there’s several different factors going on here, you know, I’m slightly anemic, I have a slightly enlarged spleen. My symptoms are more active, so we’re starting to discuss alternative treatments. I think he thinks I’m a little bit more anemic than he would like, and so we’re starting to talk about other options, and just, again, be prepared for that particular point where it does take a turn, and we have to look at some drug treatments.

Andrew Schorr:         

I’ll just say, from my own case, so my doctor’s on the west coast, Dr. Jameson, and so thank goodness, for me, my condition has been stable for quite a while. We’ve messed around with the doses of Jakafi or ruxolitinib, depending on what was going on. And I have another condition, too: chronic lymphocitic leukemia. So it’s sort of a balancing act. But let’s say I have this visit and we say, well, things are stable, we always have a discussion about, “What if something changes? What are we watching? What are the trends we look at?”

And Samantha, you’ve seen this over decades. And how many pokes have you had in that time? Like, a zillion. I told the phlebotomist the other day, I think I’ve had a thousand pokes in all these years. So, at any rate, it’s always part of the discussion, and I would advise people, in your visit, even if things are sable, say, “Not to worry, but if things change, where are we now with options, either with approved therapies, and transplant, of course, or investigational ones?”

And so you imagine, at MD Anderson, where Samantha is, and Dr. Verstovsek, where Samantha goes, or Columbia, in New York where Nick goes, these are academic centers, and they can do a lot and they’re researching more and more. So it’s an ongoing, Serj, it’s kind of an ongoing discussion, right? I mean you know patients over many years, and it’s – there may be decision points, but there may be commentary that leads to those decision points may have happened over many months or years, right?

Dr. Verstovsek:           

Yes, that’s right. You see, we are evolving in the understanding of the biology of the disease, about the management of the patients. New medications are being developed, and the utility of the testing, which we highlighted so far. And one really needs to individualize, and this is used all the time, really, you have to individualize your approach with understanding of the clinical, biological, and the timeframe of the patient’s condition over time, and be ready to face a change if necessary, or maintain the situation under good control as long as possible, with what you have at that point in time.

Now, we may talk a little bit more about new developments in Europe, where we have recent approval of what I call super-long-acting interference, for patients with Polycythemia Vera, which we will be studying here in the United States, for patients with PV and ET, which is welcome news. So we may have, in the near future, new therapies that we will be able to provide a larger group of patients with earlier-stage MPN, ET and PV, to perhaps then, study the issue of progression, halting the fibrosis, or decreasing thromboembolic risk, all of these together with a safe medication that is infrequently given and can be given for decades.

This is where we are going. We have to be realistic. The cure with the medication is hard to get. It’s a formidable goal, but realistically, in my lifetime, I think we can get it. I’m not that old yet, but I have grey hair, that’s okay. But hopefully we can do better in controlling the disease and making people live much longer with good quality of life.

Nick Napolitano:        

Doctor, we’re talking about progression. We’re talking about trying to gain information, what you can gain. Do you see value in trying to pull past medical records to determine exactly when you were diagnosed? So for me, I’m diagnosed a little over two years. I want back and I pulled medical records, and my numbers were high as far back as about eight years ago, and I even think back further than that, in high school, just having symptoms.

Knowing what I know now, back in high school, I certainly had symptoms. And so, just in talking about being prepared, being prepared with your doctor, do you see value in going back and trying to determine exactly how far along you are with the disease, or is it a point-in-time snapshot where, here’s where you are currently, and past information is not as valuable?

Dr. Verstovsek:           

That is a good question. The information, in general, that you ask about, is valuable. The most important part is, however, the current situation, whether you have any prognostic signs that there will be a change. Also the question of will controlling the disease signs and symptoms on its own, without talking about progression. Easier polycythemia vera control. Well, is your risk of blood clot decreased with what you are receiving as management for polycythemia vera?

Remember, only a minority of the people will change to myelofibrosis or active myeloleukemia. That is really unfortunate for patients like Samantha that this happened, but the reason for, what is with PV, in general terms, a control of the PV, and the risk of thrombosis. Because maybe, the main risk of dying from PV is the thromboembolic event, the blood clot, not the transformation to myelofibrosis or AML. So that would be the first one. Your ability to say how long you have a disease is information that is valuable in terms of saying, and we have to be realistic, the longer you live with the disease, the higher the chance of a change is.

But if you say I was only diagnosed three years ago and that everything before that was normal, or you say I was diagnosed three years ago, but I had the disease, appears to be 8 to 10 years.

That is information that is valuable, because you may have the disease for much longer, and the chance for the risk of change, it does go up over time. We know that, right? If you live with PV for 20 years, the risk to change to myelofibrosis or AML is higher than if you live with the disease for 10 years. It goes up over time, like everything in life. But we don’t need to pinpoint exactly the day, or the time or the month. Approximately is good enough.

Nick Napolitano:        

Thank you.

Andrew Schorr:         

Well, so, I want to—we could go on and on. I think I wanna really just get some advice from the three of you, how our viewers can most productively have a dialogue with their doctor, as they talk about treatment decisions. So Samantha, I want to start with you. What advice would you give people? Because you’ve been in many of these conversations, and you’ve talked to lots of doctors. You’re at a key decision point now, but advising others, whose situation may be different. How should they approach it, do you think?

Samantha Trahan:      

Well, I’m a researcher, so I like to be prepared, I am a practicing lawyer, and a lot of what I do every single day is read and write. And so the first thing I do is, when I’m looking at my own disease state, is start reading. Now, I came back from my doctor’s visit with this mutational analysis, and I immediately started looking into it. Right? You can start with the internet, then I look at articles on PubMed, then I contact the authors so I can get full copies of those papers, and I read those whole papers.

And then I make a list, and these are the things that I want to talk to the doctor about. So before I go to my visits, if there’s something I’m concerned about, I write it down, but also, I look to see what are the current clinical trials? Is there a drug out there that seems promising, or people have told me about that seems promising? But I write a list first, and then that way I know what I want to talk about. I think some of the biggest mistakes patients make is that they come into their doctor’s office, and they just sit there and they wait for their doctor just to tell them everything that they need to know.

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Page last updated on September 4, 2019