Jeff Folloder: Why Should Patients Give Back to the Cancer Community?

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Topics include: Patient Stories

Why should people participate in support groups and advocacy? Jeff Folloder, a 7-year CLL survivor and active patient advocate explains his involvement in various support groups and advocacy campaigns.  When asked why he does so much for the cancer community, Jeff is quick to answer, “Cancer doesn’t always end badly.” Listen as Jeff continues with his story and learn why he almost brought sunglasses to this interview.

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Genentech Inc., Gilead Sciences, Pharmacyclics, Inc., Teva Pharmaceuticals and TG Therapeutics. In partnership with The University of Texas MD Anderson Cancer Center.

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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:

Hello and welcome to Patient Power.  I'm Andrew Schorr.  I'm with my good friend Jeff Folloder from Houston who has been living with CLL since when?  

Jeff Folloder:

About seven years now.  

Andrew Schorr:

Okay.  And doing well.  He was in a clinical trial with ofatumumab (Arzerra). 

Jeff Folloder:

Correct. 

Andrew Schorr:

And is very devoted to giving back.  So, Jeff, you're involved with a local group… 

Jeff Folloder:

Mm?hmm, CanCare. 

Andrew Schorr:

…CanCare and Leukemia & Lymphoma Society, and you have kind of an administration leadership position now with the Facebook social media groups for CLL. 

Jeff Folloder:

Correct.  There's a group on Facebook called CLL Support Group with dozens of subgroups underneath it, and I've kind of become the administrator of that three?ring circus. 

Andrew Schorr:

Wow.  And about how many members or followers? 

Jeff Folloder:

We have well over 3,000 total in all the groups. 

Andrew Schorr:

Okay.  And what are people getting out of it?  What's the motivation for people being part of it?  I know why I am, but I want to hear what you see. 

Jeff Folloder:

In my opinion, it's almost a fellowship situation.  People come there with questions.  They want to know about their disease.  They want to know about treatment options, but then they wind up interacting with each other in a very human way, and they derive the name of the group.  They get support from the people on the CLL Support Group. 

Andrew Schorr:

People know they're not alone.  

Jeff Folloder:

Correct. 

Andrew Schorr:

Okay.  Now, Patient Power has played a role in your life.  You've hosted programs, you're very active in it, you've done interviews.  What do you get out of Patient Power? 

Jeff Folloder:

I say this on a regular basis:  My parents taught me if I get something out of a community, I have to give it back.  I have a good story to tell.  I have the story to tell that cancer doesn't always end badly.  And I need to make sure that people who are walking down the same path that I've walked down know that their story can end well, and it doesn't even have to end. 

Andrew Schorr:

Mm-hmm.  And staying informed, how important has that been for you in your own journey? 

Jeff Folloder:

It's a daily information intake for me.  I have the news feeds from the various forums, from the Facebook groups.  I'm constantly learning about what's new, what's being tested, what's in trial, and what kind of results are being derived from those trials. 

Andrew Schorr:

Okay.  So what would you say to people, for instance, now we're inviting people with Patient Power to be members, like people sign up with your Facebook group as well.  Sometimes people are a little hesitant.  I don't know if I want to do that, but it seems like the benefits outweigh any concerns. 

Jeff Folloder:

They do.  At least in my opinion, the benefits far outweigh the concerns.  People are concerned about their privacy, and that's something that Patient Power goes to great lengths to reassure people on.  We don't abuse their personal information.  On Facebook our groups are closed and in some cases secret groups where the information is not generally available to the public.  People are only able to open up as much as they're comfortable with, and that enables them to foster a more candid conversation. 

Andrew Schorr:

Mm-hmm.  I think it's really important, though, for people to know they're not alone. 

Jeff Folloder:

Correct. 

Andrew Schorr:

And there are safe spaces to share, and there are authoritative resources to learn from, and that's what we've tried to do.  Well, thank you so much for being part of it.  So what's your outlook for the future?  How do you see the future for Jeff? 

Jeff Folloder:

I thought about bringing a pair of sunglasses so that when you asked that question I could put on a pair of sunglasses saying the future is so bright I have to wear shades.  I'm living a great life.  I'm not just living with CLL, I'm living well with CLL—and it's because of my thirst for knowledge, and it's because of my desire to make sure that people with CLL know they're not alone and that they can live a great life.  That makes me feel better, and sometimes being selfish is okay. 

Andrew Schorr:

Okay.  Wow.  That's so, so positive, and I feel that way too.  Jeff Folloder? 

Jeff Folloder:

Correct.  

Andrew Schorr:

Houston.  I always have to pronounce his name just right.  Okay.  Thank you so much for being with us, and for all you do with Patient Power and in social media, we really, really—it's a great value to all of us.  Thanks, Jeff. 

Jeff Folloder:

Glad to help. 

Andrew Schorr:

Okay.  So consider doing what Jeff does and what I do and some of our team, and that is giving back.  So you get diagnosed with CLL, which fortunately for many people has a more positive story, talk it up.  Talk to others.  Have an active dialogue with your doctor.  Consider being involved in one of the advocacy groups.  And also help really support research to the extent you can.  Participate or maybe even contribute when you can so that we can really move more forward towards a cure.  Some people may be cured, but we want everybody to be cured.  Okay.  Remember that. 

I'm Andrew Schorr.  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 March 23, 2017