How Can I Find an AML Specialist?

Published on

Topics include: Ask the Expert

Are you considering a second opinion but not sure where to go? Are you concerned you aren’t getting enough information about acute myeloid leukemia (AML) treatment options? Leukemia expert Dr. Gwen Nichols joins us to share a valuable resource for patients to use to help find access to a specialist with extensive AML care experience and discover the full range of treatment options available. Watch now to learn more about AML care resources.

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.

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. 

Andrew Schorr:

So, Gwen, let me go over some of it with you. So Ross ticked off like four new approved therapies. And then, you have trials going on. So, is the discussion with a knowledgeable doctor and the LLS can help patients, to call your information resource line can help? Where are doctors who specialize in what I have?

Dr. Nichols:         

Yes.

Andrew Schorr:

Is the discussion you have approved therapies, and they’re experimental medicines and clinical trials?

Dr. Nichols:         

Yes.

Andrew Schorr:

Look at the whole range. It’s all put on the table. What are the approved therapies? How do they line up with what I’ve got from molecular testing? And what are choices in clinical trials? Did I get it right? You have to look at the whole landscape. 

Dr. Nichols:         

You have to look at the whole landscape. And I think that’s one of the things that LLS really can help with. When a patient or their caregiver—because, sometimes, when you have AML, you’re in the hospital. And all kinds of things are happening. And the important person who is helping you, whether that be a spouse, a child, a grandchild, a friend, we can help the caregiver navigate through a lot of information that the patient is getting from the call center. And just call us. We will help you with information, with access. You need to look at all of the options.

And, oftentimes, especially if you are not with an expert like, Ross, your doctor may be a terrific doctor but treating a lot of different diseases and not have all of the information that they need to help you make those judgments.

And we can assist with that and assist with the information that you need. The other piece is access not only to the genomics and the testing, but to being able to get to a second opinion, to a clinical trial site, to be able to have someone take care of your kids, to have all of the resources you need to make that happen—and just the backup that someone is behind you. And LLS can provide that. And we’re eager to do so. This is all free for patients. And you can get someone who has been through it to talk to you and help you.

Andrew Schorr:

And there may well be somebody locally. If you’re lucky enough to be here in Atlanta where it snowed the other day, and we couldn’t get around because they have no snow plows here, you could be connected with someone like Rick who can support you.

And the LLS knows people and families who have been touched in this way. And they can, actually, connect you. So you can hear how it affects families, patients, connect with the right specialists, trials, what questions should you be asking your doctors—a bridge maybe between your local leukemia doctor and also super specialists, researchers like Ross Levine to really get bright minds working together on your case. Did I get it right?

Dr. Nichols:         

Exactly right. And we have chapters all over the U.S. and Canada. So there is someone close enough to you who can find you what you need and will get you there.

Andrew Schorr:

We have what are called patient services managers. Did I get it right?

Dr. Nichols:         

Yes.

Andrew Schorr:

Okay. So you call the local Leukemia Society. They can help. 

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

How to Test for AML Oncogenes

Do all mutations indicate a bad prognosis? Dr. Lee Greenberger and Dr. Amit Verma share what information patients and their healthcare team can attain from genetic testing.

Published:

The AML Patient Experience

In honor of AML Awareness day, a panel of experts came together for a discussion of acute myeloid leukemia (AML).

Published:

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

Page last updated on September 3, 2019