MPN Therapy: Advice and Guidance for Making Treatment Decisions - 4 | Transcript | Myeloproliferative Neoplasms | Patient Power


MPN Therapy: Advice and Guidance for Making Treatment Decisions

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.

Andrew Schorr:         

Great advice. Nick, what about you?

Nick Napolitano:        

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.

Andrew Schorr:         

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?

Dr. Verstovsek:           

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.

Andrew Schorr:         

This is great advice, and again, you, the viewer, need to see how this applies to you, your specific situation, but the process is a very wise one. You’ve gotten a lot of wisdom here, and I want to thank Samantha Trahan,for being with us from Houston, and Samantha, we wish you all the best, with a match, with a transplant, if and when you proceed with that. Sounds like you will. And I hope you’ll keep in touch and keep us informed. All the best to you, Samantha.

Samantha Trahan:      

Thanks so much.

Andrew Schorr:         

And Nick, you’ll be checking back with your doctor as you see changes, and going through this business meeting discussion, to see what’s right for you. We wish you all the best, and we hope you’ll keep us informed as well.

Nick Napolitano:        

I will, thank you for having me.

Andrew Schorr:         

Okay, well, all the best with your business meetings in San Francisco, on your travels from New York. And Dr. Srdan Verstovsek, being with us so many times, thank you for your dedication and another time we’ll talk about all the stuff that’s in the lab. Right? At your lab and others, and so that we can be well informed and give us hope. But thanks for helping us with this discussion today. We really appreciate your devotion to us.

Dr. Verstovsek:           

Thank you, it was a great pleasure. Thank you all, and good luck to everybody.

Nick Napolitano:        

Thank you, Doctor.

Andrew Schorr:         

Well, I’m Andrew Schorr, in California, right now stable with myelofibrosis, but in ongoing discussion of what could be next for me, when and if it’s needed by all these indicators we were talking about. Thank you for watching. Send your questions and comments any time, to questions@patientpower.info, and as I like to say, “Remember, knowledge can be the best medicine of all.”

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 23, 2019