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What's Important for Patients With Myeloma?

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Published on April 3, 2020

Key Takeaways

“What’s really important, 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,” says Jake Aiello, a dedicated patient advocate who has been living with multiple myeloma for 24 years.

At the time of this interview (6/17/2019), Jack had just returned from two multiple myeloma meetings in Amsterdam, hosted by the International Myeloma Working Group (IMWG) and the Global Myeloma Action Network (GMAN). Watch now as Jack shares what he learned at the meetings and talks about clinical trials, CAR T-cell therapy, high-risk smoldering myeloma, combination therapies and more. 

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Transcript | What's Important for Patients With Myeloma?

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.

Recorded on June 17, 2019

Andrew Schorr:

And greetings from San Jose, California. I'm Andrew Schorr, and I am with my friend, Jack Aiello. And Jack Aiello, 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 were myeloma specialists, and then you were with patients 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, 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 U.S. Some countries need to have better awareness. Some countries don't have myeloma expert doctors in their countries like we have. And we try to share 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:

And that would've 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 are 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. 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 the 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 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 U.S., most patients get a combination of bortezomib (Velcade), Revlimid and dexamethasone, 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 need to understand and try to treat as personally 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 (Darzalex), 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.

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 longer period of times? Or how can you make sure that those antigens on those myeloma cells don't go away, and that therefore, the T cells, the re-engineered T cells, are effective against them?

Other treatments that are in trials that have shown to be effective so 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 as the ASCO and EHAC 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 with The Leukemia & Lymphoma 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 got to look at history. When I was diagnosed, the average life span with treatment was two to three years. These days, a standard risk patient has a life span 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. 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, in 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:

Man travels the world sometimes for us, for myeloma patients. And we got the perspective of Jack. Jack, thank you so much for being with us.

Jack Aiello:

My pleasure.

Andrew Schorr:

I 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.

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