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Confidence in Your CLL Care Team: Best Practices in Partnership and Self-Advocacy

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Published on May 13, 2019

[Editor’s note: On January 4, 2020 Bob Azopardi, after fighting CLL for many years, passed away in his sleep at his home on Long Island, New York. Bob had several low times with CLL before but also received great benefit from being in a clinical trial for the medicine that became venetoclax (Venclexta).  Bob entered that trial when his wife urged him to consult with a physician researcher. Given the benefit he received, Bob spoke out many times to patients and researchers, on videos, at events, and even in a huge stadium to express his gratitude and wish for other patients to get expert care. Patient Power is thankful Bob was with us so many times. We will miss him, but his message continues.]

How can people living with chronic lymphocytic leukemia (CLL) advocate for themselves throughout their treatment journey? During this CLL Partners program highlight, noted CLL expert Dr. William Wierda, from The University of Texas MD Anderson Cancer Center, and patient advocates Bob Azopardi and Michele Nadeem-Baker share advice on being your own best advocate and building a strong partnership with your doctor. Bob and Michele discuss the value in seeking a CLL specialist, making confident treatment decisions and learning about clinical trials, while Dr. Wierda explains how patients and doctors work together to achieve optimal treatment outcomes.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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Transcript | Confidence in Your CLL Care Team: Best Practices in Partnership and Self-Advocacy

A regular oncologist deals with all different types of cancer.  The CLL specialist, that's his job.  This is what he gave his life into.  This is what he does on a daily basis, and he sees many different CLL patients. So with that and then the objective of possibly getting onto a clinical trial you need to be with a specialist, and that's exactly what happened with me.  

So, Michele, you of course also go to a major center, Dana-Farber, and have another renowned specialist Jennifer Brown, but you talk to a lot of patients as well.  So what would you say to people about the importance of being a self-advocate wherever you get care?   

I was from Boston to begin with, so I knew of Dana-Farber.  If it wasn't for Dana-Farber I would have gone somewhere else though if I wasn't familiar with it.  It is so important to get a specialist and one of the leaders in CLL for us because that's helps us, at least for me, helps me have more confidence in what my oncologist is doing for me.  

In Florida it was a general oncology/hematology department, and I just did not have confidence in the care and the way the diagnosis was even given or in the doctor.  I knew it wasn't going to work in a partnership.  I would not have had confidence had he suggested any treatment.   

So I think it's important for patients to also not only research what they have in the options, but to have confidence in, as Dr. Wierda was saying, the partnership with the doctor.  From the other side, from the patient's side, you need to have confidence in that partnership.  

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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