Jack Aiello: ASH16 Unexpected Treatment Jewels in Myeloma

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Topics include: Patient Stories and Understanding

What are patients saying about ASH 2016?  Jack Aiello, a veteran multiple myeloma survivor of 22 years, tirelessly advocates for patient knowledge and joins us for his 34th video interview.  Guest host Mary Windishar and Jack discuss the latest myeloma news, focusing on how patients can and should improve their knowledge, thus achieving a better quality of life.  Jack points out that since 2003, 10 new medications have been approved for myeloma patients, and the average survival rate has more than doubled.

Clinical Trials Mentioned in This Video

selinexor clinical trials

venetoclax (Venclexta) clinical trials

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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. 

Mary Windishar:

Welcome to the American Society of Hematology conference.  This is 2016's version, and we're here in San Diego.  I'm Mary Windishar, and this is Jack Aiello.  So glad you're here.  You are a leading advocate in multiple myeloma, but it's also your 34th interview with Patient Power so congratulations. 

Jack Aiello:

Somebody mentioned that the other day.  I couldn't believe that.  But it's a good relationship I have with Patient Power, and they've done so much to help educate the patient community. 

Mary Windishar:

And now you're going to help us do that as well.  You said 2015 was a very, very good conference.  How are you feeling about 2016?

Jack Aiello:

Well, 2015 came off of the approval of four drugs in 2015 for myeloma, three in November, just weeks before the conference began, so I was expecting 2016 to maybe not have as much of an impact, but in fact it's—has been good.  There have been drugs, new drugs that are in trial that have different mechanisms of action, like selinexor or an HIV drug called novelimar or something like that and then venetoclax (Venclexta).  And these are new drugs with new mechanisms of action, as I said, that have been shown to work in myeloma patients, for example, combining one of these with Velcade when the patient no longer responded to Velcade.  So it's really exciting. 

Mary Windishar:

And when you take a look at all these different options for getting better for addressing the issues, what advice do you have for patients about just that? 

Jack Aiello:

Well, I think getting themselves educated is really key.  Watching videos like this, going to a support group, learning about the name of the drugs.  Patients really need to be their own best advocate, and they do so by educating themselves, writing things down, asking doctors questions.  For example, in myeloma a newly diagnosed patient really needs to know if a drug is working or not.  They should be asking the doctor, what markers are you looking at to determine if this drug is working? And then the patients begin to learn those markers and look at them themselves. 

Mary Windishar:

What does markers mean? 

Jack Aiello:

Well, basically I'm looking at in myeloma, let's say, an M spike. 

Mary Windishar:

Okay. 

Jack Aiello:

Or I'm looking at a kappa light chain ratio, or I'm looking at a plasma percentage, however they're determining if a treatment is working, those numbers are going down or up as they should or should not.  

Mary Windishar:

That's great.  And that's usually the result of a blood test? 

Jack Aiello:

Yeah, mostly a blood test.  Sometimes a bone marrow biopsy, which isn't too useful.  Sometimes a 24?hour urine test, although I went to one presentation which was really exciting.  It talked about a blood test for light chain multiple myeloma patients who typically have to do a 24?hour urine sample, and this one blood test, the free light chain test, showed that it actually gave better information than the 24?hour urine test.  So I wrote about it last night when I said, gee, if patients can eliminate this 24?hour urine test that's a great win for patients.  

Mary Windishar:

So keep track of your own numbers by asking what the doctor's looking for.  Nice idea. 

What about the advances that you're seeing in genetics?  Is that also pretty overwhelming, or is that the kind of thing that mere mortals like me can understand?  

Jack Aiello:

That's a really good question.  There are lots of studies and early studies in the whole area of making your immune system work better, and they have been going over treatments like monoclonal antibodies and what are called checkpoint inhibitors and CAR-T therapies and all those things that might be used to improve your immune system itself in working. 

And what they're looking at is what about the genetics of your own profile that will result in perhaps making one of those treatments work better or not work better, and it's important then to essentially try to personalize that treatment.  We're a ways from there, but it's the direction treatment is going. 

Mary Windishar:

When you talk about being a ways from certain things that may work in the future, what gives you hope right now?  What gives you hope? 

Jack Aiello:

Well, I look back, and I see that 10 new drugs for myeloma, no curative drugs, but 10 new drugs for myeloma have been approved since 2003, when bortezomib (Velcade) first came out.  That has improved patients' survivability from when I was diagnosed 22 years ago and it was two to three years to these days an average patient, a standard?risk patient should see survival rates of seven, eight, nine years, and increasing because they're given more treatment options to manage their disease for longer periods of time while still trying to—and it's really important—to achieve good quality of life. 

Mary Windishar:

Wow.  Thank you very much for making us all smarter.  And thank you for joining us today at ASH.  I'm Mary Windishar. 

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 December 28, 2016