Skip to Navigation Skip to Search Skip to Content
Search All Centers

Are Community Oncologists Informed About Nuances in CLL Care?

Read Transcript Download/Print Transcript
View next

Published on May 28, 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.]

Can chronic lymphocytic leukemia (CLL) patients access novel therapies in a community practice? Are community oncologists up-to-date with the ever-changing CLL treatment landscape? Listen as CLL expert Dr. William Wierda, from The University of Texas MD Anderson Cancer Center, explains how patients can find the best approach to manage their CLL. Patient advocate Bob Azopardi also shares how consulting with a specialist helps him make treatment decisions. 

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


Transcript | Are Community Oncologists Informed About Nuances in CLL Care?

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:

So, Dr. Wierda, I don't want to be disrespectful to community hematology/oncologists. They're very devoted and certainly there's some that take a special interest in CLL, and you spend a lot of time also in medical education trying to help get everybody up to speed, but how has CLL changed?  I mean, it used to be there was sort of one-size-fits-all approaches, going back to chlorambucil (Leukeran).  It's changed dramatically now.  So is it the complexity and maybe even the speed of change that makes it harder? What's changed?  

Dr. Wierda:

I don't know that there's been a lot that's changed.  We've gotten a lot of new drugs, and there have been nuances about managing chronic lymphocytic leukemia versus other types of leukemia all the way along since I've been involved in the field.  

I think the comment that I would make with regard to the community oncologists, community oncologists work very hard.  I went through the medical education process and trained as a hematologist and oncologist and you have to know a lot about a lot of different cancers.  And over the last 20 years treatments have become super specialized among and across all of those cancers.  The community oncologists have a huge task in terms of keeping up, and they for the most part will keep up very well with the common cancers, breast cancer, colon cancer, lung cancer, the types of cancers that they see a lot of in their community practice.  

CLL, while it's the most common type of leukemia is a relatively uncommon disease, so it's another disease that they will take care of, they can sort of keep up, but the nuances and the data that's come out and the new treatments for CLL have made it—it's hard for a community oncologist to keep up with everything, and so for that reason it's very important I think for patients with CLL to get a consult and to get an opinion from a specialist, particularly at the time that they are discussing treatment with their oncologist.  

Now, the one thing I would say, I was just this weekend at a meeting with a whole bunch of specialists, specialists from New York, from Boston, from all across the country and Michael Hallek was at this meeting.  And even among the specialists you will get different opinions and different approaches to managing CLL.  So I think it's important to talk to a specialist.  If you start going from specialist to specialist, and some patients do that, you will realize that there are different approaches, and you have to be sort of cautious.  And that's where sort of this partnership is important and what's your philosophy and what's important to you in terms of management of your disease becomes very important.  So I think that's something to consider.  


Andrew Schorr:

Right.  Well, I've had that very discussion.  So my specialist now in San Diego, Bill, you used to work with, Tom Kipps, we had a discussion about infused therapy versus oral therapy. What was right for me?  Which would be effective?  Which would be more convenient?  Which would be covered by insurance and to what extent?  So there are a lot of discussions that you have, but I think part of what Michele and Bob and I would say is you need to find someone that have confidence in and also check in with a specialist or two to get their take on the range of options.  

Now, let me talk about the range of options for a minute.  So, Dr. Wierda, you're at a major research center, and in New York City Bob has gone to major research centers and Michele in Boston, and so often that's where there are trials as well.  So part of the discussion today is not just about an individual approved therapy or a new combination, it's also about something that could be in trials as well. It's like it could all be laid on the table, right?  Both experimental on one end and standard old therapy on the other, and that's part of the discussion, isn't it?  

Dr. Wierda:

So that is part of the discussion.  We, when patients come to our center, would like to have a clinical trial available for everyone.  So that spans the gamut of patients who have high-risk features and don't necessarily need treatment and will go on to a treatment protocol such as a vaccine trial all the way across the spectrum to patients who have failed the standard treatments and need an alternative new treatment, a new drug that we're working on to develop in patients who are refractory to all of the standard treatments. 

Andrew Schorr:

Okay.  So it's the whole range.  So, Bob, is that what you asked for and would expect now, is, hey, doc, put it all out on the table for me?  What have you got in the closet and what do you have on the table right now? 

Bob Azopardi:

Definitely.  Definitely because I always speak with Dr. Furman, and I always say to him, you know, I'm fine now, but I know there's other novel therapies coming down the pike.  What else is there?  Suppose for some reason this doesn't continue to work for me, it fails me, where do we go from there?  Just lay it out for me so I know.  And I think I can make a better decision based on what he presents to me. 

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.

View next