Latest Myeloma News From the 2019 IMWG/GMAN Meeting

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Andrew Schorr:

And greetings from San Jose, California.  I'm Andrew Schorr, and I am with my friend Jack Aiello, and Jack Aiello is—for 24 years has been living with multiple myeloma, and along the way besides being treated he became quite a devoted patient advocate for people with blood cancers and also specifically with myeloma.  So we're in Jack's home in San Jose.  Thank you for having us.  

Jack Aiello:

Welcome to my house.  

Andrew Schorr:

And Jack is just back from Amsterdam in the Netherlands where there were a couple of meetings, so tell us what those meetings were because you were with physicians from around the world who are myeloma specialists, and then you were with patient from around the world.  

Jack Aiello:

So I attended two meetings. Both of these organizations were founded by the International Myeloma Foundation.  First meeting is the International Myeloma Working Group, and the IMWG consists of 240 some-odd myeloma expert doctors of which about a hundred of them attended this meeting.  And their sole focus is really to establish guidelines for treating physicians and—so that patients are aware of them as well as look at what projects need to be developed and worked on to benefit myeloma patients.   

And the second meeting was a meeting of patient advocates like myself, some are patients, some are caregivers, and these patient advocates, there were 34 of us representing 23 countries. And the goal of GMAN, this Global Myeloma Action Network organization is to share information across countries, all of which have different problems associated with myeloma.  Some countries can't get the drugs that we are able to get easily in the US.  Some countries need to have better awareness.  Some countries don't have myeloma expert doctors in their countries like we have.  

And so we try to share our best practices and what experiences and jobs that we have done within our own country that might be applicable to other countries to help them get past some of those barriers.   

Andrew Schorr:

Okay.  So let's start with medical news or science news because everybody wants to know are there better treatments that are being discussed, new science that could make a difference for me.  

Jack Aiello:

So I thought the—and that would have been in the IMWG meeting.  The very first topic that was discussed was high-risk smoldering myeloma patients, those patients that have, let's say, a 50 percent chance of progressing to myeloma within two years.  Should we treat those patients?  And there were some trial results that came out at ASCO and prior that says that if we treat those patients we can extend their progression-free survival by a certain length of time.  That said, you're also giving a patient drugs, and there's costs and toxicities associated with drugs.  

So the three options for those patients are not to be treated at all, to be treated with something that hopefully delays the onset of myeloma, like lenalidomide (Revlimid), or do you want to give them, almost treat them like myeloma patients and give them what might be considered a curative treatment at that point, preventing myeloma.  There are trials going on to answer those questions. So at this point it's a conversation that any smoldering patient should have with their doctor to figure out what the best path forward is.  

Andrew Schorr:

In other words, in my situation, do we do something?  

Jack Aiello:

Yeah, exactly right.  

Andrew Schorr:

Okay.  So on the other end of the scale have been people with high-risk myeloma.   

Jack Aiello:

Yeah.  

Andrew Schorr:

And that's been difficult. I mean, we've had many people like yourself, more people with longer remissions, but some people have pretty serious—it's all serious, but I mean an ultra-serious, ultra-aggressive version. 

Jack Aiello:

And it's a reason that your doctor if you're diagnosed with high-risk myeloma might treat you differently. You might get a treatment that's considered a little bit stronger but maybe perhaps more effective or you might get a higher dosage or you might get it for more cycles, because the goal really is to try to treat that high-risk patient aggressively to a point where they can still bring down their myeloma numbers.  

There was a lot of discussion with high-risk myeloma, and I think what ended up—we ended up concluding, the doctors ended up concluding, was that there really need to be trials for high?risk myeloma patients.  

Andrew Schorr:

So, Jack, we've had more therapies almost compared to other illnesses just a raft of therapies approved, so is a lot of what's being discussed is not just when to treat but combinations, who, what, when, where?  

Jack Aiello:

What to treat with, yeah. It's interesting that one of the issues that doctors will deal with is what treatment should I give?  What works best for this given patient?  And we don't really have good answers these days. I guess I would say first?line treatment for myeloma patients in the US, most patients get a combination of bortezomib (Velcade), lenalidomide (Revlimid) and dex (Decadron), but there are exceptions to that.  If it's a high-risk patient maybe they'll get carfilzomib (Kyprolis) instead of Velcade.  If it's a patient with kidney involvement maybe they'll get cyclophosphamide (Cytoxan) instead of the Revlimid.  So doctors really kind of need to understand and try to treat as (?) personably to that patient as possible given their other issues.   

And then if you relapse to diseases, wow, that opens a whole issue of what treatments work best. Monoclonal antibodies, especially daratumumab, have become integrated I think into myeloma treatments especially for refractory patients but also making its way to newly diagnosed patients. There are new procedures out there. 

I know that patients have heard of CAR-T therapy.  The presenter at this meeting on CAR-T, she said that there are currently 50 trials going on for CAR-T therapy for myeloma, all trying to address issues of CAR-T that we've already seen.  How can you—we're getting really good responses to treatment for myeloma, but patients are relapsing, so how can you extend the remission of patients?  How can you make sure those T cells persist for a longer periods of time?  Or how can you make sure that those antigens on those myeloma cells don't go away and that therefore the T cells, the reengineered T cells are effective against them.  

Other treatments that are in trials that have shown to be effective so for far, we have this thing called BiTEs, which marry up the myeloma cell with the T cell.  We have something called ADCs, which are antibody drug conjugates, which not only are antibodies against the myeloma cell but then bring this poison in as the conjugate to kill this myeloma cell as well. And there are new other areas as well, so it's really important for patients to stay on top of what's available out there. 

One of the nice things that the IMF did was create a video that's downloadable now from their website that has three doctors presenting essentially what was seen at IMWG as well the ASCO and EHA conferences that were just held.   

Andrew Schorr:

Okay.  We'll have to link to that.  So, Jack, you've been at this 24 years, and you've been to a lot of these conferences.  You've gone to Europe a number of times.  You do meetings with us, and you go around, you're very involved in the leukemia Society and International Myeloma Foundation.  People watching, some may not have understood all the BiTEs and ADCs you said, so they're going to look to you and say, Jack, is there hope for me? Now, I know it varies by your myeloma situation, but which way is the wind blowing in myeloma now?  

Jack Aiello:

Well, to understand which way the wind's blowing you've got to look at history.  When I was diagnosed the average lifespan with treatment was two to three years.  These days a standard-risk patient has a lifespan of more like eight to 10 years because treatments have improved.  And even for high-risk patients their treatments have improved.  And I guess what's really important is, from my perspective, is try to get a myeloma expert doctor on your side as part of your medical team so that they can advise your treating physician as to what would work best for you, the patient.  

Andrew Schorr:

Right.  I can't—we always say that.  We always say two things.  Connect with a myeloma specialist at least to evaluate your case.  And if you have a local doctor that's not a myeloma specialist get them talking, be the bridge if it's not happening otherwise.  And then also as part of the discussion discuss clinical trials and whether it could be important for you to consider, right?  

Jack Aiello:

Absolutely.  I've been through two trials, and I will be honest, neither of them worked for me, but one of them made a huge difference in myeloma treatment moving forward, and trials are where you really do get the best treatment and the opportunity to perhaps get the best drug that's out there. 

Andrew Schorr:

Right.  Well, Jack, thank you so much.  

Jack Aiello:

Pleasure.  

Andrew Schorr:

The man travels the world sometimes for us, for myeloma patients.  And also I just want to mention that we occasionally have these myeloma patient town hall meetings, and we have one coming up September 7th at MD Anderson Cancer Center in Houston, but it's broadcast like this, like a TV show. Dr. Robert Orlowski is one of the leaders in the field is one of our main panelists, and we're putting together a great panel, our friend Jenny Ahlstrom from Myeloma Crowd is going to be the host, so look for news about that.  But in the meantime we got the perspective of Jack.  Jack, thank you so much for being with us.  

Jack Aiello:

My pleasure.   

Andrew Schorr:

We really appreciate it. Okay.  That's what we do here.  We will see you soon, and we always welcome your comments and suggestions. 

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.