Myeloma News From ASH 2018: Patient Advocate Perspective

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Topics include: Treatments , Understanding and Patient Stories

As part of ourcoverage of the 2018 American Society of Hematology (ASH) annual meeting in San Diego, Cindy Chmielewski, a patient advocate and 10-year multiple myeloma survivor, joined Patient Power to share her perspective on the latest news in multiple myeloma survival. Cindy discusses the highlights for her in multiple myeloma, particularly related to how care is being tailored to the overall health of individual patients. She goes on to share advice and hope for patients including the importance of seeking the opinion of a multiple myeloma specialist. Tune in to learn more.

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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.

Andrew Schorr:

And what surprised me at that meeting was that they said the frailty of the patient was a better predictor of overall survival than cytogenetics, so that kind of blew me away, you know.  There's people that are looking at those patients who are very, very high risk either because of their cytogenetics or what they called functionally high risk, meaning that maybe their cytogenetics were okay, but they've just been through so many treatments, they're penta?refractory, and they're thinking of new types of treatment aimed at that group of patients.  And now we're starting to even get some treatments that are specific to like a (?) inaudible chromosomal abnormality, like venetoclax (Venclexta) is for—doing very well in myeloma patients that have a (11;14) translocation. 

So it was nice hearing that all these different groups, you know, the smoldering myeloma patients, there are people looking at when to start treatment for them.  What would be the best treatment?  Which group of smoldering myeloma patients should we start treatment with?  So I think that's what impressed me is that we're not only looking at the drugs but we're looking at the drugs for specific groups of patients.  

So I think one of the questions you want to ask your doctor is are you someone who is a myeloma specialist? Do you only treat myeloma patients? And if the answer is no, it doesn't mean that you can't be treated by that doctor.  It means that you need to also consult with another doctor who just sees myeloma patients, who could guide you in that decision?making process and then go back to your local oncologist and receive your treatment.  

But it's just—there's so many considerations that I can't imagine a local doctor who is treating all different types of cancers could know the modifications or the ways that you can tweak treatment to have patients stay on it as long as possible. 

This morning we talked about the new drug melfinafan, or I don't know how even to say it.  I thought it was just a European way of spelling melphalan, but it's not.  It's a whole new drug.  And then there was another one that was a whole new different target action.  It was like a PD?L1 inhibitor, you know, checkpoint inhibitor.  So it's just—there's too many new things to even start talking about at least as the patient.  I know they're out there but they make me very hopeful.  

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 17, 2019