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Where Can AML Patients and Caregivers Connect With Support?

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Published on August 7, 2019

What support programs are offered to patients and families living with acute myeloid leukemia (AML)? Patient Power founder Andrew Schorr is joined by Amanda Fowler, from The Leukemia & Lymphoma Society (LLS), patient advocate Don Armstrong, and leading expert Dr. Uma Borate, from Oregon Health & Science University, to discuss resources that help patients and caregivers find community throughout the journey with AML. Watch now to learn more. 

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.

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Transcript | Where Can AML Patients and Caregivers Connect With Support?

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.

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.

We have a wonderful program called the Patti Robinson Kaufmann First Connection, and that is a telephone peer-to-peer connection.  So we will match you with someone of a similar age and gender who has the same diagnosis and has already been through treatment.  And they are trained volunteers.  We also have in?person family support groups.  We have online support groups, including ones specifically for leukemias, one specifically for caregivers as well as young adults.  

We also have an online community, so if you're not available for the live chats you can post there and connect with people all over the world who have been through a similar experience.  While every patient's journey is really unique there's going to be some similarities where you can know that you're not alone.  And I think all of these technologies are great because you can even connect while you're still in the hospital.  

The First Connection program is probably one of the most rewarding things that I've done since my treatment and making it through that.  To be able to talk to another person that's going through something that you went through and really just answer any questions they may have is really very rewarding, and I know it's great for the patient as well. 

When I was going through treatment it was wonderful to hear the doctor say that you're doing well, it was wonderful to have the support from the nurses, but I really wanted to talk to somebody that had gone through is so I could say, okay, tell me about it. What was it like?  Did you have this problem?  Did you have that problem?  So it's just a great one-on-one, as Amanda said, opportunity to help answer questions and hopefully give some additional encouragement to patients.  

And so I urge you to take a look at some of these programs.  If you go to patientpower.info and just go to the leukemia and then the AML area, you can see the replays of these.  So that's another resource for you.  

And then I will tell you that some people are connecting on a platform like Facebook, and there are some AML groups there.  A couple of caveats we'll give you about the Internet.  I'm sure Dr. Borate warns people about Dr. Google.  First of all, some of the information sometimes when you just search is not current.  And you've heard for the first part of this program things are changing, right?  And it's very nuanced.  And Dr. Borate may have a meeting with her colleagues tomorrow, and they'll say, oh, well, now we know this.  So there's no way some of these services can keep up, particularly just general web searches.  So be careful about that.  That's why you need to call Amanda because she's staying on top of that.  

The other thing I'd say is in Facebook you may go to an AML group, which is wonderful, people talking to one another, but we've talked about all these different situations in AML so one person's situation may be different from another.  So there may be general support, but remember, we talked about it at the very beginning of this program, you need to talk to your healthcare team to get a clear picture of your or your loved one's situation and have a plan that's, in this age of personalized medicine, is right for you. 

And I'm sure, Dr. Borate, you have people come in sometimes with no information, but often you have people who come in who somehow have wrong information, and maybe you could talk about that, about how people—how can they ask the right questions to get to the right answers.  

Dr. Borate:

I think you've touched on such an important point because, as you said, patients are scared, their caregivers are scared.  They're looking for information.  There's information that they getting from the providers or the physicians, but obviously there is this need to help their loved one and so there is a lot of Google searching, joining groups.  

Some of the big things that we see that are difficult is there's a lot of information about supplements and alternative therapies, which while I think absolutely can help with many, many things including fatigue, nausea, feeling of well-being, I think you have to be careful about what that resource is and what studies have been done on it.  So I think those are questions that we get a lot and we try our best to have evidence-based data on these different—they're like medications because they are something you're putting into your body and while some are more natural than others, for example, turmeric is one that is used extensively by people.  They do interact with some of the other treatments you might be getting for your leukemia.  

So just understanding how your supplements are interacting with the treatments that you're being prescribed I think is important, and there's some resources that can actually do this in a very evidence-based manner.   

I think going to societies like The Leukemia & Lymphoma Society, we have the ASH, as you said, American Society of Hematology, ASCO, which is the American Society for cancer, these websites—I think the NCI website, the national center for, you know, all cancers, they're just really great resources that tell you what you're up against in a very sort of patient?friendly way that explains the treatment.   

And I think something that you guys discussed before, the First Connection resource, I think that is something that—I mean, it's a resource that is so underutilized because even as a provider who treats AML for many years I don't have the experience that Don had.  I didn't go through a transplant.  I didn't go through GvHD.  So while I can discuss side effects I can't really present a patient's perspective, and that's what they are looking for a lot of times.  Just looking at a role model or reassurance that this is what a patient or somebody who looks like me went through and came out on the other side. And, yes, it wasn't a walk in the park, and, yes, it was awful at times, but he came out on the other side and this was what he needed to do that.  I think that is so valuable.  

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.