Strengthening Your AML Care Team: Questions to Ask Your Doctor

Published on

Topics include: Living With Acute Myeloid Leukemia

What questions should acute myeloid leukemia (AML) patients ask to learn more about their treatment path? From newly diagnosed to later stage disease, experts Dr. Uma Borate, from the Oregon Health & Science University, and Amanda Fowler, from The Leukemia & Lymphoma Society (LLS), provide some topics for patients to bring up with their doctor. The panel also shares ways to get more information on clinical trials and eligibility.

This is a Patient Empowerment Network program in partnership with The Leukemia & Lymphoma Society produced by Patient Power. We thank Celgene, Daiichi Sankyo, Jazz Pharmaceuticals and Novartis for their support. These organizations have no editorial control.

View more programs featuring , and

Produced in association with

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.

Amanda, what questions—I know it varies by where somebody is in their journey with AML, but what questions do you suggest to people that they ask their doctor or a new center that they go to so that they or mom or dad get the right treatment?  

It really does depend on the phase of where they are on their treatment, but an important question, something that Dr. Borate alluded to earlier, is what the goal of treatment is. Is my goal curative, or is my goal to extend my life for as long as I might be able to?  Because people are on that borderline sometimes of fit and unfit, and they need to understand which type of drugs the doctors are prescribing for them and why.  

And then of course the question of am I a transplant candidate, why is why not?  I encourage people to ask why because they may think I'm a great candidate and the doctor says well, actually you know, your cardiac function is very poor and you won't be able to survive a transplant.  I think it's good for peace of mind to understand the reasons doctors are making these decisions for them.  

With the way treatment is evolving there's options now.  Really there used to be, like we said, for 40 years there was one option.  Now there's many, and so you want to be sure that you're comfortable with your choice, comfortable with your physician because this is going to be a long journey.  No matter whether you have transplant or not this is something—it's a long relationship, and so we encourage you to call us and we can help guide you to those centers of excellence.  Even if you're at one you may want to talk to a second one as well.  

I do agree with Amanda that sometimes for AML, and fact a majority of times for AML when the diagnosis is made time is of the essence, so unfortunately sometimes our patients don't have the luxury of being able to go for a second opinion or get a second opinion simply because they're so sick.  They're in the hospital.  Their disease needs to be treated right away.  

But I completely agree, once that first step is done I think taking a pause, talking about different options with your current physician and then saying, hey, do you mind if I go to the next center?  So, for example, we're close to Seattle or California.  Just taking a flight and having a conversation and usually the second opinions really reassure the patients and the caregivers that they're on the right track, and so they can come back to their original center and continue their treatment.  

The one caveat I have to a second opinion before starting therapy—or after starting therapy, rather, is once you've already received a therapy for AML you may not be eligible for a clinical trial for newly diagnosed AML patients.  So we do have patients that come to us after having several cycles of therapy and then want to participate, and unfortunately the way trials are designed you want to get all the information right from the beginning, and so that's when you enroll on a study when you're starting your treatment.  

With that said, I mean, it is what it is sometimes just because of the rapidity of the disease and the symptoms, but that is if you're considering a clinical trial very strongly you may want to go to a center of excellence sooner rather than later.  

Amanda, any comment you want to make about that?  Because I'm sure you have people, they're very stressed out.   

Sometimes that can help inform where you go.  If you're debating between California and Seattle and our nurses narrow it down and say, you know, there's a trial in Seattle you could be interested in, it might help inform where you actually go for your second opinion.  And you would reach them the same way you would reach me, through the Information Resource Center.  

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.

Related Programs

What Tests Are Used to Assess AML Treatment Response?

What tests help with assessing AML treatment response? Watch as Dr. Daniel Pollyea explains tests for AML patients to identify risk factors, guide treatment and evaluate response.

Published:

When Should AML Patients Consider Genetic Testing?

With eight new AML treatments arriving within the last year, when should patients consider genetic testing? Watch now as expert Dr. Naval Daver explains.

Published:

When Should AML Patients Consider a Transplant?

When is the right time to think about whether a transplant is right for an AML patient? Watch now to hear AML experts explain discussion to have with your doctor.

Published:

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on August 26, 2019