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How Are Doctors Personalizing Smoldering Myeloma Care?

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Published on April 9, 2020

Key Takeaways

Smoldering myeloma is a controversial topic in the myeloma world right now. Experts debate if it is really a category of myeloma at all, and if patients should be treated immediately or just be observed. During a recent conference, we asked three myeloma specialists to give their take on it from a recent conference. Watch to hear their perspectives and how it really is patient dependent.

This program is sponsored by GSK and Karyopharm. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

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Transcript | How Are Doctors Personalizing Smoldering Myeloma Care?

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.

Jenny Ahlstrom:                           

Hello, my name is Jenny Ahlstrom, and I’m the founder of Myeloma Crowd, and welcome to Patient Power. Today we have with us three myeloma experts at the ASH Hematology 2019 meeting. And we’re really thrilled to have them with us and talk about all the amazing advances that are happening. So, thank you, doctors, for coming.

We have with us Dr. Faith Davies from NYU, we have Dr. Larry Anderson from UT Southwestern, and we have Dr. Nina Shah from University of California in San Francisco, UCSF, and there’s so much to talk about.                   

I’ve heard a lot about smoldering myeloma like, "Should we get rid of it as a category? Should it just be MGUS and myeloma? Do we keep it as a category? Do we treat? Do we not treat?" Is it really like half the cases might not even be a smoldering myeloma. They might be actually active myeloma.

So what strategies are you seeing for this group? Because myeloma is a mind game. As a patient, you play that game all the time. And it would be easier for patients if we had a go-to strategy that seemed to be effective. But you don’t want to overtreat, you don’t want to undertreat. It’s really tricky. 

Dr. Anderson:               

I think it’s really controversial right now. There’s certainly data that at least a certain subgroup of patients may benefit—certainly will benefit from treatment—especially the higher risk patients that have higher M protein and higher plasma cells and higher light chains. Those, you could argue that there’s data that those patients would benefit from treatment. Every risk feature doesn’t mean that they—just because they have one risk feature doesn’t necessarily mean they’ll benefit from this.

And we’ve got many patients that have had smoldering myeloma for over 20 years and haven’t needed treatment. So, we really just want to protect those patients and not necessarily expose them to side effects that they may not need, and perhaps maybe even getting them on therapy that might make them resistant many years before they needed the therapy.

So, right now, we’re not really treating everyone with high-risk smoldering myeloma, unless there's a clinical trialCertainly, the ultra-high risk with many of the risk factors, we’re certainly considering it through.

Dr. Shah:                      

It’s really patient dependent. Sometimes patients come and say, "I want to be treated." And I have to convince them, "No, you don’t need treatment." And others are like, "Please don’t tell me that I need treatment, because I want to go play tennis, and I want to have my life, and I don’t want to be a patient." I think it’s really important to keep on top of smoldering myeloma patients. I really—even if I have to do remote access. I look at their labs, they’ll come to my inbox. I can actually do televisits with them—whatever I have to do, because I don’t want to miss anything. 

And if that’s okay, then I’m okay watching them. But the people in the smoldering space have done an amazing job of trying to get people on clinical trials. I think immunotherapy, vaccine therapy, their T cells are actually really much better in that state. That’s a great place for that.

So, I really hope we’ll have more research to answer these questions. We don’t know the answer. It’s hard to tell a patient, "I don’t know," you know.

Dr. Davies:                    

There was a debate on Friday about it. And the panel and the room split. But I think what one thing everybody did agree on was that there’s a group of smoldering myeloma patients who are the high-risk smoldering—well, are the ultra-high-risk smoldering myeloma patients. Who as you say, probably should actually be considered as myeloma? 

There’s then a group of smoldering myeloma patients who are low-risk and should just be monitored closely. So, the actual group in the middle is relatively small, okay, which are the controversial group. And certainly, in my own practice, for that controversial group, I want to not only see them when I first meet them, but see them again maybe one month, two months or three months later and repeat many of those tests again.

Because I think the definition of smoldering means you’re stable. I think if you’re moving up, then that puts you into a different box. It doesn’t mean that we need to start treatment differently, but it puts you into a different box. So, I think the real controversy is over the ones that are very stable, and what we should do about that.

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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