[ Anglais] Can Past Medical Records Be Valuable in Learning About Potential MPN Progression?

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As myeloproliferative neoplasm (MPN) patients prepare for doctor’s appointments, would pulling past medical records provide any valuable information? Is it important for doctors to know exactly when the condition started developing? During this highlight from our “MPN Therapy: Advice and Guidance for Making Treatment Decisions” program, renowned MPN expert Dr. Srdan Verstovsek explains what disease features are critical in helping health care teams identify risk and treat MPN patients. 

The Partners series is sponsored by Incyte Corporation. This organization has no editorial control. It is produced solely by Patient Power.

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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.

Nick Napolitano:        

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 acute myeloid leukemia . 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. About 10% of people will progress to myelofibrosis (MF). Blood clots and strokes are two examples of a thromboembolic event. Lower third graphic: The bottom line from Dr. Verstovsek is that it’s more important to monitor how you are doing now rather than to trying to pinpoint your medical history.

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 May 9, 2019