Connecting With the Virtual CLL Community

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Topics include: Patient Stories

Why should you connect with other CLL patients virtually?  Patient Power founder, Andrew Schorr, met with three patients and a care partner to share and discuss how and why virtual connections are important to your overall health.  From discussions of camaraderie to confidence-building, learn how online resources have alleviated uncertainty and even connected patients to specialists, cutting-edge research and clinical trials.  

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

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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:

What we want to talk about today is really how you connect with a virtual CLL community. We’re doing it right now. And if you’re watching, you’re kind of part of it as well. But our folks here have been really into that. And I think more of us—and I have to tell you a story just for me. So I’ve been living with CLL 20 years—treated in a Phase II clinical trial at MD Anderson in 2000 at CR. It worked. I’ve had no treatments since then, although my white count is kind of creeping up. But I did develop a second cancer four years ago, myelofibrosis. But, fortunately, I’m taking medicine for that and staying in control.

Yesterday, I went to where I get care, UC San Diego. And I’m getting my blood drawn, and people start coming up to me. And they know me from the Internet. We have a big coffee klatch. Then, we go upstairs to Dr. Tom Kipps’ waiting room. And it’s like more people.

There were like six of us. And we knew each other, and we knew we had something in common. And it was rather than people sitting in the waiting room who didn’t—what are you there for or not talking with your nose in a magazine. It was so much fun. I felt so supported. So I wanted to hear how you connect with others. So first of all, Lisa, let’s just start with you because, Lisa, you decided to start a group on Facebook for women.

Lisa:       

Right.

Andrew Schorr:                  

So what do you have, what is it, and why do you do it? 

Lisa:       

Well, I couldn’t find a group that fit me that I felt comfortable with. And so I decided to start my own. And because I do a lot of research, I figured what the heck. I’ll just start posting everything I research. And before I knew it, people were joining left and right. And I made a lot of friends. And it’s a great group.

And I have a lot of well-educated women in that group and a lot of professionals, nurses. And we support each other. And it’s great.

Andrew Schorr:                  

What do you call it? What’s it called?

Lisa:       

It’s on Facebook. It’s CLL SLL NHL Cancer Support for Women.

Andrew Schorr:                  

Okay. 

Lisa:       

And I try to keep things pretty simple. I don’t like to get extremely technical. It’s more support than it is the complexities of the disease itself, although I post the abstracts and a lot of the important updates and things that are going on—but more so support. And I’m really a more behind-the-scenes type person. I like to work one on one with patients.

Andrew Schorr:                  

And what has it done for you being part of it?

Lisa:       

Well, it’s the camaraderie and just making friends and sharing information and how everyone is doing and just the support.

It makes a big difference. It takes away a lot of uncertainty. And it’s confidence building. Again, it’s nice to be able to build confidence and helping patients communicate better with their doctors and coping with the disease itself and the challenges that we deal with on a daily basis for long periods of time and treatment.

Andrew Schorr:                  

Right. And you’ve had different treatments and different side effects of different treatments. So it’s not a straight line. You get confident, everything is cool. It has its ups and downs. 

Lisa:       

Yes, we do have our ups and downs. And I can share my experience. That takes away uncertainty from patients. And it makes them feel more comfortable, so they know what to expect. And our doctors are great at what they do. They’re really good at managing us. And I think taking away the uncertainty from our treatment is really helpful—and how we get through that and deal with the challenges—and sharing the challenges that we go through. 

Andrew Schorr:                  

Stella, so you’ve become sort of an Internet maven, right, in checking out communities, getting information, checking out providers. Talk about how you have really connected with the virtual CLL community and how it’s helped you as a couple and Len related to his care. 

Stella:   

Well, we do research together, because Len is very technical. And there are things that I read that are more difficult for me to interpret. And so we do that. But I’ve also posted things for caregivers, because caregivers have a lot of stress on them as well.

And it’s really important for caregivers to be informed so that they can somehow share what it is that the patient is going through. And I had put up a post about things that caregivers should think about in order to be supportive. And that has been very, very helpful. And I’ve been part of these discussions. And it’s nice to not feel alone. I think that’s a really big part of it is that, with this disease, you tend to feel very isolated. So it’s good to know not that other people have it. But it’s more that you can share the information, and it’s available to you. That you’re not isolated, even though you live miles from a doctor. And that’s one of the things that we find on the post.

Andrew Schorr:                  

And I understand that you mentioned Dr. Furman earlier, Len, that identifying him as a specialist who might be right for you. That came by some online investigation, right?

Len:        

Yeah. At the time, I was living in California and going to Stanford to a CLL expert that is a co-author with Dr. Furman. And Stella wasn’t happy with the way he was presenting things. And I went looking online and found an online discussion group, it was a CLL SLL Yahoo Groups at the time. And Dr. Furman is the medical advisor of the group. Now, it since evolved to be CLLSLL.io. And the group is not nearly as active as it was five years ago. So there are one or two posts a day. But I’m also actively involved in reading posts and helping people mostly by either sharing my own experience or pulling up articles that I’ve gotten from experts.

I keep a pretty good digital library. So I read posts and post to groups like the HealthUnlocked CLLSA Group, originally out of the UK, but now it’s as American as anything else, the ACOR group, the CLL Forum and CLL Christian Friends. So I’m reading all of those groups, and if somebody asks a question that I have good information or a document that I can send them, I usually respond either privately or post the answers. So things like that, sayings or what I’m doing about Medicare, what’s my experience been with venetoclax (Venclexta) or ibrutinib (Imbruvica) or like in a clinical trial, I try and help. 

Andrew Schorr:                  

What has the benefit been for you?

Len:        

I guess it’s been a higher order thing called self-actualization, feeling like you’re doing something worthwhile. I’d still like to be doing consulting, but my industry, virtually, has died over the last year. So it’s really impossible for me to get paid work. So I’ve turned my energy towards volunteer work both going online with CLL and work with my church and very heavily involved with supporting lower income people in the community. So I split my time between those two.

Andrew Schorr:                  

Let’s go over to New Mexico. So, Patrick, first of all, I have to comment, former CIA agent. But I would think of a lot of what you do in the CIA, I’m sure there are a variety of things, but some of it is really uncovering information. 

Patrick:                 

Absolutely. 

Andrew Schorr:                  

Sort of sleuthing. So how have you taken what was really your career and applied it to your illness as far as getting information and also connecting with others?

Patrick:                 

So immediately, before my diagnosis was even formally confirmed because that took a process of several months, I went to the Internet at whatever level the Internet was in January of 2009. And I came across Patient Power at that time. I came across Brian Kauffman was talking about his what turned out to be failed transplant. So he was blogging about that. I was reading Dr. Terry Hamlin’s, he was an oncologist from Great Britain who had a blog called Mutated, Unmutated. And I was reading that daily.

He had a different kind of cancer but a specialized hematologist. And I think there was a woman, Chia Vennett who had a… 

Andrew Schorr:                  

Mmm-hmmm. 

Patrick:                 

Immediately to the web to find everything I could. And I think it was from you that I learned about the Lymphoma Research Foundation. And it just happened soon after my diagnosis was confirmed, that fall, they had a symposium in San Francisco. And so my wife and I went there. And at that symposium, as you know, the way they organize it, it’s about all of the lymphomas, but they do breakouts. And so I got to meet, close and up front, your doctor, Dr. Thomas Kipps. I have to say, at that time, I concluded if I ever went to a specialist, that’s who I wanted to go to. 

But Dr. Susan O’Brien who was at MD Anderson was there, too. So I’ve continued here to be more of a lurker.

I’m on listservs, and if I have questions, I go on, or if I can answer somebody’s question. But I’ve not considered myself an expert. Maybe I failed to mention I’m a clinical psychologist, so I probably am more of an expert in that. And here, I have had friends who have CLL. But I’ve sort of figured out that the CLL world seems to divide into people who do not want to know details about their disease and just want to turn it over to their physician. A year ago, just before I went in treatment, the CLL Research Consortium, of which Dr. Kipps is sort of the chair, had a meeting in San Diego. And they had a patient meeting that sort of surrounded that.

So my wife and I drove out to San Diego to attend that. And that was my exposure to the subgroup you were talking about today of people who were sort of Dr. Kipps groupies from Los Angeles. From Orange County down, I think they drive to see him. And I was very envious about sort of the warm, supportive – it was just a wonderful two days. And a lot of it had to do with that patient support. But I’ve not figured out how to get that from the Internet. I’ve been mostly a watcher and sort or more passive.

Andrew Schorr:                  

Okay. But given even being passive, Len is posting, and Lisa is posting. And they are really very active in their community. But even if you’re lurking, as you say, what’s it done for you as really making a connection? 

Patrick:                 

Among the biggest things, there are some sort of mantras. And so I knew I was going to, eventually, have to see a CLL specialist. 

And, as I told you, I’m turning 65, and I was diagnosed with I was 57 or 58, and I want to live a long time. And I knew about Dr. Keating who is your doctor in Houston. But I was exposed to my doctor, Dr. Wierda, through you. And I knew him to be from you and investigating and online that he had been a student of Dr. Kipps and a friend of Dr. Kipps. And so I called MD Anderson sort of cold and found out where there orientation is. If you want to see a particular doctor, you can see a particular doctor. And I chose him because he was in the subculture I had already learned to respect from, basically, you.

And he was available. And it’s been wonderful. I will say, on the contrary side, I knew from you and the other bloggers, but I would say probably more Patient Power, that you need to create a team.

And I’m a psychologist. I’m a fairly sophisticated people person. And I have not—that was not easy at all. So my local—I had an oncologist here who was very good. And then, he decided to retire. And I was sort of passed on. And the man I was seeing had a hissy fit when I opted—I was, actually, in line for clinical trial for ACP196 and then got too sick too fast before it opened to non-previously treated people. And when I elected, when I said I’m going to do the clinical trial, I, basically, was thrown out of this doctor’s practice. And then, once I was on obinutuzumab (Gazyva), I could have, theoretically, not had to fly to Houston for all of the infusions. But it was very difficult to find an oncologist here.

It’s just not used here in town. But I finally found one. But because Patient Power, in particular, is so nice, and I respect that so much, I wish I had a patient support group that would have helped me through that tense period of trying to figure out how you pull together this aim because it’s harder than…

Andrew Schorr:                  

Lisa, you need to form a group to facilitate for former CIA agents, CLL.

Lisa:       

That’s actually what I teach is how to put your network together and your support group and the doctors and everything. And I do the behind-scenes counseling. And I know, you being a psychologist, it’s not easy. We’re now on the other side. I’m a certified peer counselor. And I worked in dentistry for 20 years as a dental tech. I think it’s harder for us to be on the other side. We’re not used to asking for help. 

We’ve always been the helpers. So I have found a happy medium and use my professional training to help patients. And it works really well, because once patients are educated, and they get their team together, and they’re feeling confident, they do really well. And they are able to move on and then just touch base and keep in touch as much as they’d like to. And I make friends. And it’s really great. 

Andrew Schorr:                  

I have a couple of stories to tell. First of all, Len, you were with us when we did a town meeting in New York. And I remember seeing you there. And it’s great to get together in person. You schlepped in from Jersey City, and some people came further. There was one gentleman who is actually a rabbi who has not disclosed to his synagogue membership and the board that he has CLL. And he was very worried about it, because he didn’t know whether it would risk his job or how people would view it, etc.

So there are people who, for whatever reason, don’t feel that they can talk about it locally or among their people close at hand for whatever reason. I’m pretty public. I think we all are pretty public. But it’s funny, in this original ACOR group, if some of our viewers don’t know, ACOR.org, and as a CLL listserv that’s been going for 20 years, that’s what connected me with my treatment, eventually, in Houston and other people, even in my home town and in Seattle. But know there are people who have been on there who have used pseudonyms. I think we’ve got some famous people on there.

And they did not want to disclose that they had CLL. They made up some name. And that’s who they are to that community. Nobody cares. And it’s, actually—but they’ve gotten a great support from it.

So, Len, it’s okay. Patrick was saying he just sort of lurks. That’s okay, right? You’re very proactive, but whatever works, right?

Len:        

Yeah. I usually am answering a post, answering a question. So I’m not out. There are people like Chris Dwyer from CLL Canada that post four, five, six things a day on each of the different boards. And, usually, if I answer one or two questions a week, that’s a lot for me. But I’ll usually do it in depth. It all depends on what your preferences are. And the different discussion groups are different, too. The CLL Forum is a lot around mutual support. Christian Friends is almost entirely mutual support. And things like the CLL SLL IO Forum, the moderator won’t allow any kind of expressions of support. She demands only technical information.

Andrew Schorr:                

And then, you mentioned on HealthUnlocked, so we’ll tick off some resources as we go along. So we mentioned ACOR.org and the CLL group there. I think it’s got 3,000 or so people. There’s HealthUnlocked. And there are a couple of groups there. Patient Power established one. And there’s the CLL Support Association from United Kingdom. And you mentioned, Len, it’s broadened out, and people post things there. We’re doing kind of the news interview kind of things on PatientPower.info. Brian Kauffman has his blog in the CLL Society providing information.

There are a lot of resources and then, Facebook groups. And there are a few, Lisa. I mean, there’s yours for women, but there are other Facebook groups as well, aren’t there?

Lisa:       

Yes, there are. There’s a lot Facebook. There are several Facebook groups. We all run our groups different. And you just have to find a group that you feel comfortable with that you fit in with. I would definitely check into some of the other groups and see which one is able to meet your needs the best.

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 January 30, 2019