Navigating AML Clinical Trials

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Topics include: Living With Acute Myeloid Leukemia

Is there treatment available for acute myeloid leukemia (AML) patients who are not responding to the standard of care? Could a clinical trial be viable option? AML expert Dr. Gwen Nichols from The Leukemia & Lymphoma Society (LLS) discusses why patients should consider participating in a clinical trial, what kind of care they will receive, and how to get involved. Dr. Nichols also shares what kind of therapy placebo patients get in trials. Watch now to learn more about AML clinical trials.  

This is a Patient Empowerment Network program produced by Patient Power, in partnership with The Leukemia & Lymphoma Society (LLS). We thank Astellas, Celgene Corporation, Novartis, Pfizer and Seattle Genetics 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.

Andrew Schorr:

How nimble can we be now?

Dr. Nichols:     

AML is tricky, in that regard. So a lot of it depends on how rapidly it comes back and how rapidly it’s recognized. But there definitely are secondary therapies, most of which are experimental. And for patients whose disease has not responded to their initial therapy, I’d really urge them to consider a clinical trial. This is where we need to make some progress in AML and where the opportunity to get a therapy that’s novel and new that might do better than our standard of care is really optimal.

And so, we at LLS have a clinical trial navigation service. And I’d like to plug it for a minute.

Andrew Schorr:           

Sure.

Dr. Nichols:     

Only because I think it’s easy to say you should get on a clinical trial. But there are a lot of reasons beyond patients being anxious about being a “guinea pig.” I have to say, I’ve been a clinical trialist for most of my life. You’re not going to be a guinea pig. You’re going to be carefully watched, even more carefully watched, perhaps, than if you weren’t on a trial.

Andrew Schorr:           

Sometimes, it’s VIP treatment.

Dr. Nichols:     

Exactly.

Andrew Schorr:           

There are a bunch of patients in the waiting room. You’re the trial patient.

Dr. Nichols:     

You’re in. You get the red-carpet service. But it’s also you’re not going to get no treatment. You’re not going to be on a placebo that is nothing, a sugar pill. You might be a placebo, but it will be with a standard treatment for your disease.

So I can assure you, you’re not a guinea pig. In fact, you are a VIP. And but there’s more to it than that. For patients, it may mean traveling a long distance. It may mean your caregiver taking off of work to get you back and forth. I’m sure you experienced that, when you were getting your transplant from Atlanta. And the effects on everyone in your family, in your ecosystem, in order to do this, many patients just don’t have that support network or financially can make that happen. And so, we can talk, not only about what it means to be on a clinical trial but to find out what the barriers are and try and help you figure out a way to overcome those barriers.

Another thing our nurses, in the clinical trial unit, can help with is to say here are the four or five clinical trials where you fit, where you’re an actual candidate, because a lot of people go and ask for a clinical trial.

And they may come to Dr. Levine, and they don’t have the right criteria to enter the trial. And then, they’ve gone from wherever they live to Sloan Kettering in New York and paid a lot of money for a hotel room and so forth. And they have not gotten on the trial. We can do the calling and the navigation to find out that the trial that Ross has, you’re actually a candidate for. And it’s worth going in and seeing him and trying to get on that trial.

Andrew Schorr:           

That’s great information. 

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 July 2, 2019