Patient Café 2016: The Power of the Virtual Connection

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Topics include: Patient Stories

Why join an online discussion group?  Patient Power host, Andrew Schorr, wraps up this Patient Café discussion with participants, Lisa, Len and Stella, and Patrick.  Each of the participants found and continues to find pleasure, comfort, insight and valuable resources in their various virtual communities.  And, as Andrew points out, it’s a way to add to another patient’s confidence. Stayed tuned for our next Patient Café! 

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:

Well, let’s go sort of around the horn, if you will. I want to get a final comment from everybody about connecting with the virtual CLL community, which is our topic today, and how it makes a difference for you and what you would say to others about doing that. So what about for you, Lisa, about not feeling alone and making that connection?

Lisa:       

There are a lot of great people out there working in the CLL community that are willing to volunteer their time to help overcome a lot. And if you can seek out those people, it’s definitely helpful and beneficial.

Andrew Schorr:                  

Well, I want to thank you for your devotion.

Lisa:       

And it’s something worth doing. And I’ve made a lot of great friends. 

Andrew Schorr:                  

You have. Stella and Len, how about you, what you’d say to other people about drawing on the community?

Len:        

I think we found that some people, like you said, don’t really want to know, don’t want to put the effort in to learn the technology. So there are a few groups that are not technical. Some people just don’t want to talk about it. Stella’s counselor is one of those that she doesn’t want to know anything about her own disease. She’s a trained psychologist, but she doesn’t want to learn about multiple myeloma, which, to me, is very strange. But I love her. She’s a wonderful person. So I respect the fact that she doesn’t want to be immersed in the technology.

I’m an engineer. I’m data driven, so I’ve got to have more data. So it’s to each his own. And we’ve met some others. I connect with a number of people, patients, to exchange emails. One of them sent me an email today, because their doctor tried to give them the bum’s rush and not get them a stem cell transplant and told her she’d be dead within two years if she didn’t have an SET right away. So that kind of—I like helping them. That lady Lisa, it’s another Lisa, but Lisa doesn’t like to post. So she’s more comfortable sending me an email. Well, to each their own.

Stella:   

I would also say that Esther has it right that we are partner in this disease, that it affects us in ways. And it is important that, as the caretaker that you’re as educated and that you go on the boards, you look at the information, you do the research so that you can be helpful, because there are times when the patient isn’t being rational, because their life is on the line. 

And so having somebody who also understands the information is very important. So I would highly recommend that even the—not even—the caretakers also, in order to keep up their end of the partnership, should be doing the research. 

Andrew Schorr:                  

Well said. So how about you, Patrick, the benefits or what you’d say to others about being part of a CLL community online?

Patrick:                 

In my case, Los Cruces has about 100,000 people. And about a quarter of a million people actually come here for medical care. We’re near El Paso, Texas, which is a big city. But this isn’t Washington DC where I used to live in the suburbs of Washington.

And when I first got sick, I thought what have I done? I moved so far away from Georgetown where I might have been treated or Johns Hopkins where I might have been treated. But I have found this virtual community to be a remarkable resource. And narrowly, even Patient Power, in the last year, you held a symposium in Phoenix under MD Anderson. I guess they have an affiliate in Phoenix. And then, I really liked the one you did at Houston because of it being folksy. And I’d been there, and I knew it. 

But you spent more time on that one talking about the things that also interest me that impact on the disease. So being so far away from the city center and not really being able to participate in a live support group is less than optimal.

But I’m very grateful for this online community. I do feel part of a community, other than the trip to San Diego a year ago or many years ago, the trip to San Francisco. I haven’t really met the live community of people.

Andrew Schorr:                  

Well, thank you for all your comments. I just want to say what’s been a beautiful thing for me, now, 20 years, is there is a vibrant CLL community. So Len said it, to each their own. But for the people who take advantage of it, I think it has benefits. I’m going to look forward to having lunch with this guy that I met in a way through the Internet, because he knew me. And if I can help him feel a little more confident as he makes treatment decisions, great. It’s thrilling to really get together with all of you. And I would really recommend people who may be seeing this on one of the websites to really consider.

You could be a lurker. You could be answering questions privately. You could be posting like crazy. You could be on Facebook, whatever works for you. And I think the bottom line is you’re not alone.

Lisa:       

That’s what’s nice about Facebook is I have private message. And people don’t have to post on the main feed page, and so whatever works for you.

Andrew Schorr:                  

Right. Well, you can make up a name, as I said, or you can contact people privately. And Len says he answers people privately. Whatever works. And I want to thank all of you for really being support of what we’re doing at Patient Power, too. And we’ll try to do more of those live broadcasts, too. So whether you go from Los Cruces, Patrick, or you just watch it like a TV show, it’s there for you. Well, we’ve gone almost an hour. I think there’s been a lot of information we’ve talked about.

Resources, I’m just going to recap a few. If I get them right, make sure I do. So certainly, I’d like to talk about Patient Power. There’s the Patient Empowerment Network that’s doing a lot. It’s been the sponsor of this program. There’s Brian Kauffman’s CLL Society and Brian’s blog. Dr. Jeff Sharman has a blog. He’s a very devoted physician. There’s the ACOR list, CLL Forum, I think I said. Lisa has her Facebook group. And what’s the name of that, again, Lisa, the name of your Facebook group?

Lisa:       

It’s CLL SLL NHL Cancer Support for Women. It’s the only group for women exclusively.

Andrew Schorr:                  

And there are other CLL groups also. We mentioned Christopher Dwyer was mentioned, and he has a group called Bad to the Bone. And there are a number of them. So lots for all of you. So I hope this has been helpful. But the point, the underscored point is you are not alone. 

If you’re a caregiver, a caretaker, care partner, you are not alone. So lots of support. And I think, as you’ve heard people on different treatments here, there’s a lot of hope in CLL and more and more lines of therapy and more to come. And please consider clinical trial, because that can help move that along. So I’m Andrew Schorr in Carlsbad. We’ve had Lisa with us from Issaquah, Washington; Patrick from Los Cruces, New Mexico; Stella and Len from Jersey City, New Jersey. Thank you all for sharing your insight here. And I hope, for our viewers, you can share this patient café and join us for another edition of the patient café coming soon. 

Thanks to your supporter in this, the Patient Empowerment Network and the grants they’ve received from AbbVie and Genentech. I’m Andrew Schorr from Patient Power. Remember, knowledge can be the best medicine of all.

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 3, 2016