[ Englisch] ASH 2017 Myeloma Update With Patient Advocate Jack Aiello

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Topics include: Treatments

What’s the latest news on new myeloma treatments from ASH 2017? Long-time patient advocate and multiple myeloma survivor Jack Aiello gives us an update from this year’s meeting and explains what new treatments give him hope for myeloma patients. Tune in to get updates from this myeloma expert.

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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.

Esther Schorr:

Hi there.  This is Patient Power, and I'm Esther Schorr.  I'm here in Atlanta at the American Society of Hematology conference, happens annually, and there are more than 25,000 hematologists here and researchers.  And I am fortunate today to be with Jack Aiello, who is a long-time multiple myeloma survivor and one of the most amazing patient advocates I know.  So, Jack, can you talk just a little bit about what you do? 

Jack Aiello:

Sure.  I've been a myeloma patient now for 23 years, so that's a long time, and I've learned a lot about myeloma.  And I'm fortunate to be in a long-term remission, which has given me a chance to become a pretty active advocate in the myeloma community.  I'm able to serve and provide a patient perspective on a number of national organizations.  SWOG is a committee that develops clinical trials, NCI is an organization by the government that approves clinical trials, and I serve as an advocate for myeloma patients on both of those committees. 

And I love coming here to ASH to be able to keep furthering my own education about what's the newest and greatest, about new treatments and such for myeloma.  And then I'm able to share that with other patients, other patient groups, other advocates, and we go from there. 

Esther Schorr:

So from your perspective, Jack, what are you hearing?  I know that not all of the papers about research in the myeloma area have been presented yet, but I know you know some of what's been presented and what is coming.  What would be you think of interest to other multiple myeloma patients that are listening? 

Jack Aiello:

Well, if you look at treatment of myeloma, it typically starts off with induction treatment, what's your first line of treatment going to be, and myeloma patients have a number of options available to them in the United States.  Probably the most common option is lenalidomide (Revlimid), bortezomib (Velcade) and dex (Decadron).  But I have already seen oral presentations given earlier today where ixazomib (Ninlaro), another proteasome inhibitor that's oral, would replace Velcade and has already been approved for relapsed patients and is now being tested as first-line therapy.  Daratumumab (Darzalex) is a monoclonal antibody that was approved for relapsed/refractory patients a couple of years ago and now is being tested again in induction first-line treatments. 

So last year at ASH there was a big announcement of a trial called StaMINA, and StaMINA looked at three options, not getting a transplant, getting a single transplant—I'm sorry—getting a single transplant, getting a single transplant with extra therapy called consolidation, and a third arm of getting two transplants. And all of these options were then followed by maintenance treatment.  And in last year's proposal it was concluded that there wasn't really much difference between the three arms. 

This year I've seen oral presentations that say a double transplant may well be better than either of those other two, especially for high-risk myeloma patients.  So it's been a standard question for myeloma patients, should I get a transplant, not get a transplant, because we do have a lot of other options available to us, and I'm afraid we don't exactly have the exact right answer yet, but we keep seeing and keep doing the research on it. 

Esther Schorr:

So does that mean if you're a myeloma patient newly diagnosed or you're going down the road that one—it's not a one-size-fits-all, you have a number of questions that you have to pursue with your specialist? 

Jack Aiello:

You know, if you're a newly diagnosed patient the best advice I can always give is get educated and if at all possible get a second opinion from a myeloma expert.  And the good news is around the country and really around the world there are many, many myeloma experts out there, especially compared to when I was diagnosed two decades ago.  So that's the good news for patients, it's really is good to get a myeloma expert on your team so that they are able to consult with your local oncologist. 

Esther Schorr:

You mentioned to me and I've been hearing about CAR-T therapy.  Do you want to just—what's going on with that related to multiple myeloma? 

Jack Aiello:

So as patients might be aware, a couple of CAR-T treatments have been approved for other types of blood cancer called ALL, and now treatments and trials are starting for myeloma.  Probably ASCO, another conference like this six months ago, was a big event because several CAR-T therapies were—trials for myeloma were announced and initial results were provided.  But they were for very, very few numbers of patients. 

So I'm hoping at this meeting that some of those trials and maybe others will be further expanded so that we can learn more about what potential side effects there are to CAR-T therapy, if you are getting good responses how long are those responses lasting, and all of that is important because it's a pretty—it's a treatment that can be really difficult, and you need a really, really smart doctor to be able to treat you.  And clearly for a long time it's going to be done within clinical trials. 

Esther Schorr:

And that's actually what I've been hearing about the CAR-T therapy trials and treatments, that it really is still—everybody is learning, that it looks very promising, but they're all, all the doctors and researchers are learning as well where it's applicable, where it's not, durability, etc.  So is there anything else you want to say just about your experience here at ASH? 

Jack Aiello:

Well, there are a couple other things I'm looking forward to.  If you follow CAR-T therapy, it is looking at an antigen called BCMA.  Well, a company is going to be announcing at this meeting further results of a BCMA monoclonal antibody that myeloma patients are taking, and I'm excited to see what the results of that trial might be. 

We will learn more about a targeted therapy.  A treatment called venetoclax has been shown to work for—best for patients that have this what's called a translocation 11;14 marker, and that's exciting.  We really don't have any type of real targeted, specialized, precision medicine for myeloma until perhaps this initial venetoclax (Venclexta) is being used.  So there's lots of excitement here.  I'm enthusiastic about it.  In fact, this will probably be my last answer to your question, because I have to run off to another meeting. 

Esther Schorr:

Jack, thank you so much.  It is very encouraging for all of us to hear this and especially to have somebody like you who is really on the ground as a patient who really cares about these things, and you're here to help us communicate. 

Jack Aiello:

I have to say one other thing.  I'm sincerely indebted to the International Myeloma Foundation.  It's their organizations and the companies that have made donations to them that have enabled them to bring 10 of us patient advocates to ASH so that we can absolutely provide more information out there and offer our patient perspectives. 

Esther Schorr:

Thank you for sharing that.  And so that's it for now.  I'm Esther Schorr from Patient Power at ASH.  And remember, knowledge can be the best medicine of all. 

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 January 19, 2018