[ Inglese] Patient-to-Patient Advice: Staying Informed With an MPN

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Topics include: Understanding and Patient Stories

Being diagnosed with a rare disease like a myeloproliferative neoplasm (MPN) comes with an abundance of new information, many of it hard to understand. How can you overcome the learning curve and take a more active role in your MPN health care? Where can you find sound information about the disease and developing treatments? Patient advocates, Samantha Trahan and Andrea Spica, share savvy advice from their experience on where to learn more about MPNs, the value of specialists and second opinions, and effective communication with your health care team. Watch now for tips on becoming an empowered patient on your treatment journey. 

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:       

Was there anything unique that you did that hasn’t come up today that you just kind of wanted to make note of?

Andrea Spica:              

I think the only thing that I would say is, in educating yourself around your disease, it’s important to look at many sources. Certainly, your doctor and that team is number one source. But there are other aspects online that you can get on. There’s clinicaltrials.gov. There are all sorts of good information, not false news, as they say. But I think that what I found got easier, when I started reading these reports and reading this information, all of these words got in the way. And I was like I don’t know what this is. But the more I read and the more I read, things started to make sense. 

And then, I would ask questions of the team. I would look up topics. And now, I can read a scientific article, not like a doctor, certainly, but I’m not intimidated. And I get something out of it.

And the more I read, the more I get out of it. So I encourage everyone to do that. Don’t get scared when you’re reading these papers or looking online and seeing what other people say. Keep getting informed on your condition, because you’re the only one that can really help you. As we spoke, everything is individual.

Beth Kart Probert:       

That’s great advice. Samantha, did you have anything to add to that?

Samantha Trahan:        

I do. I’m a big proponent of visiting with other doctors. Every doctor has a different perspective. Their research interests are very specific. And so, you might benefit from hearing these different perspectives. A doctor who might be most interested in inflammation or in new treatments or in the immunotherapy, and so, watch these videos on Patient Power. Watch these other symposium type panels. Find a doctor that is researching and is addressing an issue that feels important to you or that connects with you in some way.

Contact your insurance company. Find out what they would pay for you to go see them as a second opinion. Set up a visit with them. Ask for their financial assistance in their department so that you have an opportunity to meet face to face some of these other specialists. They all have something important to say and a little bit different. And then, you can take that information back to your own primary physician or to your own primary hematologist or specialist and visit with them about that. 

If Dr. V is your specialist, he does not care all of these other doctors that I go to see or that I go to these other panels or travel around and attend these other conferences. I get information. I’m a researcher, and then I go back, and I read the ASH abstracts and see something that’s interesting to me. I get on Pub Med and start looking at scientific journals and other reports. But I could not do that initially. It takes time. 

There’s such a learning curve for you to be your own advocate. And I think a big part of learning how to do that is to see other physicians and other specialists so that you get to see a world of opinions.

Beth Kart Probert:       

Great. Excellent advice. 

Dr. Yacoub:                

And I actually would like to commend you on this observation, because second opinions were invented by doctors for them to get help. So even your local hematologist would benefit from you visiting somebody else. He will learn more skills. He will learn more knowledge by you. So, you can help your doctor be a better doctor by getting a second opinion, so it actually works for everyone. 

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 April 24, 2018