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Patient-Provider Partnership: Navigating Myeloma Clinical Trials

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Published on December 20, 2019

Key Takeaways

  • Have a partnership with your provider to explore clinical trials.
  • Work together to define a clear plan for your treatment.
  • Ongoing conversations between the patient and the physician can also help to understand the disease better.

Multiple myeloma advocate John Rosengard and his doctor, Dr. Nina Shah, from University of California San Francisco (UCSF) Health, discuss a clinical trial that he is currently participating in, and how patients and providers can work together to navigate what can be a complex decision-making process. Watch to learn ways patients and their healthcare team can explore suitable trials and other treatment options.   

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Celgene Corporation, Janssen Pharmaceuticals and Takeda Oncology for their support. These organizations have no editorial control, and Patient Power is solely responsible for program content.

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Transcript | Patient-Provider Partnership: Navigating Myeloma Clinical Trials

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.

John Rosengard:

I learned that I had multiple myeloma from the back-pain route, I guess I’d call it. I was diagnosed at UCSF in November of 2017 and started my treatment with Dr. Shah a few weeks later. The treatment involved me joining a four-medication clinical trial and then having an autologous stem cell transplant a few months later in May of 2018. 

After that, moved into the consolidation and maintenance phases of treatment. Consolidation brought back my quality of life pretty quickly, but, in maintenance, which will stretch out for another year to come, really just means testing and monthly infusions for me. Dr. Shah, do you have anything else to add about the clinical trials that I’m involved in or how patients might navigate the clinical trial process?

Dr. Shah:                     

Yeah. So, it was a great partnership that you and I had for the clinical trial, and one of the things that this particular trial was looking at is understanding how many drugs are good for a myeloma patient upfront. As you know, we—the standard now, give three drugs up front, but this explored possibly using an additional drug. And in your case, this drug was daratumumab (Darzalex), which is an immunotherapy. It’s interesting that we’re having this interview today because this drug, daratumumab, was just FDA approved to be given, upfront, exactly in your setting, with a transplant.

And so, even though your study is still maturing, the study before yours is confirming sort of what we thought might be true. So, it’s hard to say every detail that goes along with getting into a clinical trial, but I think one of the things that’s really important is a really nice conversation and partnership between the patient and the provider, because it’s our responsibility, as providers, to explain the disease, why it happens, what are the clinical manifestations, what pain you may be having, what other things might be abnormal in your labs and, for you, as a patient, to feel like your symptoms are being addressed, but then, also, what there is as a clear plan for your treatment.

And in this way, the discussion about clinical trials really naturally enters because, if there is a clinical trial available, even in the upfront setting, like as what’s happened to you, it’s worth it to consider because that gives an additional opportunity for the patient and the physician to talk more about the disease and also talk about, what are the ongoing questions that we have in our study of multiple myeloma? So, in this way, I think the conversation between the patient and the physician can help not only to understand the disease better, but also understand clinical trial options together.

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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