Patient Café 2016: Finding Clinical Trials and CLL Specialists Online

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Topics include: Living Well and Patient Stories

Are there online resources that can help CLL patients find clinical trials and CLL specialists?  In this session of the Patient Café, Patient Power founder and CLL patient, Andrew Schorr, speaks candidly with patients and care partners Patrick, Len, Stella and Lisa.  Hear the members’ advice for finding clinical trial information and networking with other CLL patients for insider news.

Sponsored by the Patient Empowerment Network through educational grants from AbbVie and Genentech 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. 

Andrew Schorr:

One other point I was going to make, just from my own experience, so when I was considering being in the clinical trial, and Patrick mentioned I used to go to Dr. Keating is where it all started for me 20 years ago, they thrust a bunch of papers in front of me, sign this, sign that.

And I know each of you have probably had those if you’ve been in trials. But I went back to my ACOR CLL group, and I said is anybody in this trial, FCR? 

And there were three or four people who raised their hand. And I was able to correspond with them and get ahold of them on the phone. And I was asking questions beyond what Dr. Keating or his wonderful nurse, Alice Lynn, were able to tell me. I said were you able to work? How much nausea did you have? How much fatigue? It might be different for me, but I wanted to know their clinical trial experience. And that is one of the cool things about the online groups nowadays. You can actually find people who are in a trial that you’re considering a new treatment. Now, your experience may vary.

And, Lisa, you saw that with ibrutinib (Imbruvica). I mean, your experience was one. But that’s not everybody’s.

Lisa:       

There are some people that tolerate it just fine. And I see all the trials and the patients in my group that are in the trials that are going on now. And it’s really, actually, exciting to watch how things are going to have access to the patients in the trials. 

It’s very helpful.

Andrew Schorr:                  

Right. The other thing is, and you mentioned it, Stella, you said you would go if there was an option that you thought was attractive like a clinical trial, you would go where that was. And you can look up things on clinicaltrials.gov, and a lot of people do things like that. But when you go to the local doctor or you mentioned it, Patrick, if it’s not a trial they’re doing, or they’re not doing a trial, they may not be talking about it. So, Patrick, you found that you had to go the extra mile out of Los Cruces?

Patrick:                 

Yeah. The local physician who, down here, the best practice in town is connected to the University of New Mexico. And unless the University of New Mexico is involved in a clinical trial, then, they’re sort of dead set against it. And I forget the terminology for the standard of care of document that’s produced.

But the irony, and we talked about it gently, of him kicking me out was that Dr. Weirda was on the committee for standard of care but was recommending the treatment. And all I was asking was to be followed. And now, my next step, next treatment, and this I don’t know, and you all probably have more experience with this, is nowadays, MD Anderson may not have all of the clinical trials. Ohio State seems to be sort of the center of excellence for CLL. So I might have to have a discussion with…

Andrew Schorr:                  

Well, whatever. And, Len, you probably answer questions for people like that. In other words, I wouldn’t say that there is one. There’s a lot of business paperwork and these IRBs and all of this process that affect where trials are as well.

Like here in San Diego, I imagine, we have a few different major groups. So there’s UC San Diego. There’s also Scripts. And there’s even another one, Sharp. But let’s just say among Scripts, I’ve heard cancer patients go to and UC San Diego. Well, there could be one trial at one place, and across the street there could be another. Len, how do you counsel people to get information on trials beyond what maybe any individual doctor is telling them? 

Len:        

Well, people ask me. I can do searches very well on clinicaltrials.org or .gov. And I also talk quite a bit to Dr. Furman. And whenever we talk about things like venetoclax (Venclexta) or ACT196 acalabrutinib, I knew which trials he was running.

And as Patrick mentioned, OSU is running the investigator-initiating trial, the triple combo with ibrutinib, obinutuzumab (Gazyva) and venetoclax. That’s the only place where they’re doing a triple, because there’s not a drug company sponsoring it. But all the rest of the ones usually wind up with a Phase II or Phase III in New York somewhere, one in San Francisco somewhere, Chicago, Cleveland, all around. So there [are] usually five or six locations that are running trials if it’s a pharma company-sponsored trial. And, of course, there’s always NIH with its own trials.

Andrew Schorr:

And I think, for our viewers, I want to show though, Len has really made sort of a science of it. Lisa is particularly into the emotional support for women dealing with these conditions and, certainly, as her own clinical experience.

Len gets into the science and is researching stuff for people. And, Patrick, you’ve been looking up things for yourself. But what I think is the important point now is the CLL community is getting pretty wired. And hopefully, more people will—they used to say a lot of us have, well Lisa doesn’t and Stella doesn’t, but a lot of that we have a little bit of gray hair. Typically, people are older when they’re diagnosed with CLL. And they used to say, well, people our age don’t look for electronic information. They just nod their head and do whatever the doctor says and that’s it. I think the CLL community is an example of not that increasingly.

And people saying what are my options out there? Do I need treatment? What are the treatments? What are the side effects? What’s investigational? Who is doing it?

What’s the straight scoop on it? And I’ve been it around it, again, 20 years. I have to give deference to somebody who is not with us. So there was a woman name Barbara Lackerets in the late ‘90s. And she was a speech therapist in the public school system I think outside of St. Louis. And she got the nickname Granny Barb, so Granny Barb Lackerets. And I’ll tell you, folks, when we look back on the history of the Internet for our condition, CLL, she was like Susan B. Anthony. She was right at the ground floor. And it was Barb who started the CLL group on ACOR, first for hematologic malignancies.

She said I have CLL, and then it started dividing up so it wasn’t just NHL or SLL. But it really focused on CLL. But it really focused on CLL. And when I was first diagnosed, and I’ve told this story before, but I thought I’d repeat it because of how far we’ve come, 1996.

My wife, Esther, said to our nerdy friend, David Neudleman, he’s a computer guy, is there anything on the Internet about what Andrew has been diagnosed with? And he comes over to our dinosaur computer, and he goes like that, and he goes there’s this group run by this woman Barbara Lackerets. And so I was terrified, because I thought I’d be dead. Esther thought I’d be dead at age 45. I had no idea what CLL was. The image of leukemia was a little kid, bald head, being treated for acute lymphocytic leukemia, not me. And we wrote a note to Barb and said could we talk to you on the phone?

And I remember standing on our deck, Mercer Island, not too far from where Lisa lives in Issaquah, Washington, in the late spring. And we got ahold of her. 

And she called us back, spoke to Esther and me, and said chill out. It’s not acute leukemia. You’re not going to die tomorrow. There are other people who will support you. And she said, and you guys have been talking about centers of excellence, she said, at that time, there was no specialist. Lisa has one in Seattle. But there wasn’t then. And she said Houston, Dr. Kipps, Mayo Clinic, Dr. Rye out on Long Island. There were a few of them. You got to connect with one of these guys. That was in the early days of the Internet. And it made all of the difference for me, because my local doctor wanted to start me on fludarabine (Fludara) and cyclophosphamide (Cytoxan) alone right then.

And I said to him how long will this last? He said maybe five or six years. And I said what then? And he said we’ll probably re-treat you with that. How long will that go? Maybe another couple of years. I said are you saying five years, seven years, whatever? I’m 45 years old. That’s it?

It didn’t sound too good. So, ultimately, that connected me. And I said to him, again, I don’t mean to monopolize the conversation, but I’m really passionate about it, very nice community oncologist, sweet guy. And I said other patients are telling me that I should get a second opinion and go to one of these major centers. And I mentioned Dr. Keating and MD Anderson. And he said I’ve heard him speak. He’s going to say do this. And I said my life is on the line. And I think I should go check. And he said you’re HMO, which I’m part of, Dr. Feldman, we won’t pay for it. I said I think I have the wherewithal to at least go to this other center to get checked. I’m going to go do it. Guess what? 

He said Dr. Keating would endorse his treatment plan. And I remember vividly Dr. Keating said hell no, I would have said that six months ago or maybe a year ago.

And maybe he heard me speak at a conference then, but not now. You don’t need treatment right away. And when you do, and we’re going to monitor you, I may have something in a trial that’s better. And that led to me being in the FCR Phase II trial. But it started with Granny Barb and David Neudleman doing the Internet search. Voila, there’s a community. So I don’t mean to pontificate about it. But, Stella, it was a cool story of connecting with others.

Stella:   

Exactly.

Len:        

That’s how we found Dr. Furman.

Stella:   

Yeah.

Andrew Schorr:                  

Through others. Lisa, go ahead.

Lisa:       

I keep a real close tab on all of the clinical trials, because I’m a four-time cancer survivor. And I’m not going to qualify for any trials. So I’m living on the cutting edge of research. So I’m watching all the institutions and all the doctors and all the trials that they’re putting together.

And there are a lot of them right now. And they’re trying to figure out which combinations are going to get us home. And the longer I can stay stable right now on this drug, the better off it’s going to be for me. But I definitely share that information.

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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Page last updated on November 1, 2016