A Patient Advocate's Perspective on Developing Myeloma Research

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Topics include: Living Well and Treatment

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Diagnosed with myeloma in 2008, retired teacher Cynthia Chmielewski has moved on to a new group of students: myeloma patients and their caregivers. Working with myeloma patient advocacy groups to mentor and educate other patients, Cynthia has earned the nickname the "myeloma teacher." Keeping up with developing research is key for Cynthia in this role, and she joins us to share her thoughts on the evolving myeloma landscape. She discusses progress in the study of new therapies, strides in managing quality of life and the potential road to a cure for some people with myeloma. With science quickly moving forward, she stresses the importance of patients teaming with a specialist and staying educated to ensure they receive the best--and most current--care.

Made possible through an educational grant from the Patient Empowerment Network, which received support from Onyx Pharmaceuticals, Inc.

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Transcript

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.

Here is one of my favorites, Cynthia or Cindy Chmielewski—--did I say it right? 

What was exciting here too is I’m hearing more doctors, maybe they have in the past.

But I wasn’t tuned into it, but they’re thinking about the quality of life for the patients.  When they’re doing their treatments, they’re talking about redefining their types of treatment so that the quality of life for patients is better.  Last night, I heard one of the doctors talk about that when we look at treatments for our patients we’re not only looking at quantity of life, but we want also to look at the patient’s quality of life.  So that was pretty nice, as a patient seeing from that perspective. 

I’m hearing that there are ‘new classes of drugs being investigated.  The monoclonal antibodies are seeming to have some effect on myeloma, and some of the HDAC inhibitors, and I think there’s a KSY…--

And I think you know some of the survival statistics they have, and they say, you know, an average survival of seven to 10 years, but that’s with the drugs we have now.  We don’t know what’s going to be happening in the future, so those statistics are probably old by the time they’re published.  So I’m feeling very, very hopeful. 

Yes. 

So it’s—--we have our individual journeys.  I don’t have myeloma.  I have other cancers.  But we all know people we’ve lost, but we have other people who have been living well for a long time.  So it sounds like it’s important that people connect with myeloma specialists. And with this landscape of treatments and working on it and improving it, they need to be educated and to have an ongoing discussion with a provider that they trust, right? 

And when I was thinking about that, I was thinking how important it is for me to educate myself so that when I go to my doctor I could ask questions and ask him why he’s choosing a particular type of treatment.  And I believe with everything that’s coming up that you really need to see a specialist to guide your treatment.  I just can’t imagine a general oncologist being able to keep track of everything new in development. 

And they’re talking about different types of myeloma now.  It’s not just one.  They’re breaking them into different categories. So depending on your genetics and how you respond and all these factors, your treatment may change.  Sometimes you might need maintenance treatment, sometimes you may not.  So I just think there’s just way too much for a general oncologist to really be confident, especially in the relapsed/refractory setting—maybe a newly diagnosed patient, maybe, but I still think you should have someone guide that treatment. 

Now, you are not alone.  You have Cindy.  You have a lot of other leaders who are online, and you also have our friends at the International Myeloma Foundation, one-to-one resource of support helping to direct you.  There are groups around the U.S. and many around the world also so that you are not alone with maybe a diagnosis of something you never heard of. 

And also one other point, wouldn’t you say, many people, not everybody, but many people are truly senior citizens who are diagnosed with this, and there may be that first doctor saying, well, you’re older, and we’ll just help you feel better.  They deserve the best. 

Well, we’re all very devoted to you, a patient or a family living with multiple myeloma, so you get the best, have the hope for a long life and certainly the news here is things are changing.  But again, get informed, marshal the resources that exist and make sure you’re getting the best for you. 

On location in New Orleans at the American Society of Hematology with my dear friend Cindy, I’m Andrew Schorr.  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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