Guidance for Newly Diagnosed MPN Patients

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The uncertainty provoked by a recent myeloproliferative neoplasm (MPN) diagnosis causes many patients to yearn for a more concrete vision of the future. What’s going to happen now? MPN experts Dr. Srdan Verstovsek from The University of Texas MD Anderson Cancer Center and Dr. Abdulraheem Yacoub from the University of Kansas Medical Center provide tips for newly diagnosed patients prepare for their journey ahead with practical advice on living with an MPN, MPN treatment, symptom management and making lifelong decisions with your healthcare team. Watch now to gain a better understanding of what you can expect going forward with an MPN.

 

Produced in partnership with The University of Texas MD Anderson Cancer Center. We thank Incyte for their support.

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Transcript

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.

Beth Kart Probert:

But, Dr. V, when you start working with a new patient, and you’re trying to allay their fears and giving them some guidance on coping, is there something typical you say to them when you’re figuring out how we’re going to forge forward?           

Dr. Verstovsek: 

The one focus in the therapy of myeloproliferative neoplasms is to understand that this is a lifelong process. The medications that we have, at the moment, do not really eliminate disease. And that the goal of what we’re going to do for the rest of their life, and we become friends forever, many friends here, is that we should control the disease, make it as chronic as possible, eliminate signs and symptoms, and enjoy life fully for as many years as possible. So one aspect that we do is to be straight forward and say what it is and what it is not and what we can do and what we cannot do.

And then, also, to make sure that individualized approach is in place. And then, not everybody has the same, and this is very important second question here, Julie, the same life expectancy.

I do not ever go back in time and, from past experience, and project what the patients will do that I see in my office in the future. Everybody has their own stories. So, we’re going to be on that journey together controlling the signs and symptoms for as long as possible with medications that we’re going to implement and develop together. And participating in clinical studies is highly encourages. Sometimes, we have to go to the bone marrow transplant as the ultimate curative potential with the associated risk. But we try to do smart things together and make decisions as partners.

So I think partnership between the doctor and nurse, physician assistant, all supportive staff with the physician is the ultimate goal for us.

Beth Kart Probert:           

That is excellent advice. And I would like to ask Dr. Yacoub, as Dr. V said, we’re going to be partners for life. And that really means we better like each other. We better be in sync with the doctor and the team. 

What are some of the things that a new patient or someone who feels they need to get a second opinion or wants to transition to a new specialist, could you give us an example of some questions we should be asking the potential new specialist so we start off that relationship on a good note?

Dr. Yacoub:         

I would like to second everything Dr. Verstovsek has must mentioned. It’s extremely important that we are open with our patients about this still is a disease that is a cancer. We’re never going to congratulate people for having a low-risk cancer. Still, you would have been better off if you didn’t have it. But it still is a manageable disease with a very, very long life expectancy and promising treatment options.

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 February 20, 2018