Published on May 13, 2019
How can patients feel confident about their myeloproliferative neoplasm (MPN) care? In this highlight from our MPN Partners program, renowned MPN specialist Dr. Srdan Verstovsek, from The University of Texas MD Anderson Cancer Center, and patient advocates Samantha Trahan and Nick Napolitano share advice for approaching treatment decisions. Samantha and Nick discuss ways patients can prepare for appointments, get educated about their condition and make informed decisions, while Dr. Verstovsek offers an expert perspective on the importance of education, engagement and second opinions. Watch now to learn more.
The Partners series is sponsored by Incyte Corporation. This organization has no editorial control. It is produced solely by Patient Power.
Transcript | Key Tips on How to Approach MPN Treatment Decisions
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.
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?
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.
Your doctor wants to talk to you about your current state, and are you stable, but the patient, I think, needs to be prepared to drive those questions and answers, so the doctor knows what you’re concerned about, and the doctor can give you the information that you need. So, to do that, I’m a researcher. So I look at first, the drugs, different research trials, news other patients might have told me that I think is important. If I’ve gone back over my medical records and I’ve seen a change, these are the things that I come prepared to ask about, and then I think the visits are much more effective.
Great advice. Nick, what about you?
I think Samantha nailed it. We’re very much alike in that way, where we’re—I do a lot of research. I have a list of questions that I go to, and I call it a meeting, right, that I go to the meeting with my doctor. I look at it this way, you should have a goal for every single doctor visit. Your doctor, like Samantha said, is not gonna sit there and just tell you everything. He’s gonna want to hear from you. He’s gonna know that you’re involved in your disease and you’ve done some research and want to know what your concerns are.
And I will say, it’s extremely important that you’re going to an MPN expert. Because I had an experience where, before Dr. Heaney, where I did have a list of questions for my previous doctor, and he deferred me to another doctor because he wasn’t quite up to speed on some of the questions I had about the drugs and progression and things of that nature, and so, very, very important that you’re seeing and MPN expert, so that if you do come to that meeting with a list of questions, you’re getting the answers that you need.
It’s a business meeting, or a job interview, however you want to prepare, see it in your mind.So Dr. Verstovsek, let’s just get the final comment from you. What would you recommend to patients or even family members with them, how to approach, from their end, treatment decisions?
First to say, Samantha and Nick have really done an excellent summary on the patient perspective, and this is really what I’m looking, in all my patients, to achieve. The best patient, for me, is the one that engages with me in the decision making, and understanding what the problem is, what you know about it, what we’re gonna do about it. And then, decision actually is made by the patient, him or herself. Because I’m here to help patients go through life with the disease under good control, with my advice. I’m telling the patients what I would suggest be done, and of course, the patient is the one that is the decision-maker after all.
So, education and engagement are the two aspects that I emphasize to every patient that comes through the door. This is how it should be done. You should know what you are dealing with, to the extent possible. Understand it, go online, go to the chat rooms, go to Patient Power. Educate yourself, and then engage. Learn about it, discuss it with the doctor, and understand your particular position. What is the position for you therapy, whether this is the best one? Seek a second opinion. I tell my patients go for second opinion. They come to me for second opinion.
Don’t ask too many second opinions. These are not the second opinions anymore. Third and fourth and fifth, there are too many opinions. We are all human and we differ, okay? Two are okay, three, all right, but no more, because then you’re shopping for a doctor. That’s not good enough for your mental status. And then, be a team member. That’s what we all come to do, right? It’s not only, in my clinic, about me. There’s a physician assistant. My Julie is an amazing physician assistant, and all my nurse. So it’s a team effort from us, and the patient becomes a team member, too. It’s an MPN team that tries to do the best for your particular case.