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.
Transcript | Confidence in Your CLL Care Team: Best Practices in Partnership and Self-Advocacy
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.
What's your view of partnership with patients today, Bill?
What's my view of partnership with patients. Partnership with patients for me is having patients understand their disease, having me work with them through the course of their disease, working with them and allowing them to participate in the discussion and contribute to the decisions that they need to make through their treatment. So guiding them through their treatment and directing them in the best treatment to get the best outcomes that they can for their disease.
Okay. And you don't object at all to what I would call a smarter patient like the three of us here?
No, not at all.
Okay. So, Bob, you said getting to a specialist, and you learned along the way to advocate for yourself. From what you know in CLL today why do you think that's so important?
The time that I spent with a regular oncologist was like a—it was difficult, because it was a constant routine of chemotherapy, etcetera, etcetera. To get with a specialist is completely different, you know. And today it's not that difficult, because a new patient has the social media and Patient Power to begin with to research their disease and at least move forward to someone who deals with that on a daily basis.
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.
Well said. It probably saved your life given how sick you were.
When he went into his—Dr. Furman, when he went into the doctor, specialist where he ultimately was in a clinical trial you went in in a walker, right?
Right. I was with a walker for 22 months, and I also had my wheelchair with me. And when the prognosis came down from Dr. Furman and the clinical trial came up I—at first I wasn't really in favor of it, but I guess we'll discuss that further also, and I was told I really had no choice in the matter. So I took it, and it was a long road ahead, but it turned my life around. Turned my life around.
And you have a great boat. You go out on Long Island Sound and all that.
Yes, thank God. It was the—first trial I was on it gave me my life back. And, Andrew, as you know, prior to Dr. Furman I had seen many upscale physicians and especially one who was well renowned, and again by seeing Dr. Furman and having that clinical trial offered to me, you know, was it. I wouldn't be here if it wasn't for that.
Some of it is timing for sure, what's available and where.
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?
If I hadn't been a self-advocate, and as Bob was just saying, if he hadn't been, we would not have ended up with potentially the best treatment that is out there at the time. So one of the things by being, by advocating for ourselves, we were able to find out some of the options that are out there. When I was first diagnosed even in 2012 there wasn't that much on the internet that was all that credible. That's how I found you, Andrew, and Patient Power. You were just about one of the only few at the time that had anything that was truly credible and backed up by the medical community, the leaders in the community. So that helped guide me what to do.
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.