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People Are Talking: CLL

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Published on March 27, 2020

Key Takeaways

  • Online support groups provide a safe space for CLL patients to connect with others on a similar journey and to share information, camaraderie and hope.
  • Financial concerns are big topics of discussion in online support groups.  Worries include: paying for a drug and wondering if insurance and Medicare will cover costs. People share their knowledge of various assistance programs that help provide resources.

Will insurance cover the cost of my treatment? What do these test results mean? Do I really need to see a specialist? In this episode of People Are Talking, Patient Power Co-Founder Andrew Schorr discusses these and other hot topics with three CLL patient advocates who moderate popular online support groups: Jay Blatt, from Chronic Lymphocytic Leukemia Survivors; Jeff Folloder, from CLL Support Group; and Heidi Yates, from CLL Support Group (ages 50 & under). Watch now to hear what CLL patients from around the country are talking about, and to learn from three patient advocates who provide support, knowledge and hope on a daily basis.

This program is sponsored by Janssen and Pharmacyclics. These organizations have no editorial control. It is produced by Patient Power and  is solely responsible for program content. 

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Transcript | People Are Talking: CLL

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, Andrew Schorr from Patient Power in Carlsbad, California north of San Diego. Living with chronic lymphocytic leukemia since 1996 and living pretty well. So, I'm grateful for that. There are people all over the country, all over the world. So, we decided to kick off a new series called People Are Talking.

What is going on particularly in social media and let’s talk to the people who run CLL groups on social media to find out. So, let’s jump around the country. Let’s start in the east, East Hampton Long Island, New York, Jay Blatt. This series is Jay Blatt’s idea. Jay, welcome, tell us a little bit about the group that you run. What’s it called; how do people find it?

Jay Blatt:                             

Hi, everyone. The group that I'm a co-administrator of is called Chronic Lymphocytic Leukemia Survivors, and it’s spelled out, and it’s a Facebook page. It’s been around since 2016, I became involved with it about a year ago and we’re doing really, really well. We have close to 2,700 members, and it’s just growing by 120 people a month. So, we’re just taking off.

Andrew Schorr:                   

How many people now?

Jay Blatt:                             

We’re up to 2,700.        

Andrew Schorr:

Okay, great. Jay, you were diagnosed in 20...       

Jay Blatt:                               

...2016.

Andrew Schorr:                   

Okay. No treatment so far?

Jay Blatt:                             

Right.

Andrew Schorr:                    

Okay. Let’s skip down to Houston, Texas. Another friend, Jeff Folloder. Jeff, your group?

Jeff Folloder:                          

Good afternoon. I’m Jeff Folloder, and I am a patient advocate. I am the lead administrator for a Facebook group called CLL Support Group. Pretty simple, we’ve got a little over 6,000 members now. It’s sort of like herding kittens, because everybody wants to talk, and everybody wants to be heard. But more importantly, everybody wants answers.

I have been living with CLL for almost a decade now and went through a clinical trial about eight years ago. Got a really nice six-and-a-half-year remission off of it. Currently relapsed, just saw my doctors at MD Anderson and I’m still in watch and wait right now.

Andrew Schorr:                   

Okay. Now let’s go to Memphis, Tennessee, Heidi Yates. Heidi, younger, and that’s the theme of your group. What’s your group; how many members do you have? What’s your story?

Heidi Yates:                         

Hi there. I’m Heidi Yates, I am in Memphis Tennessee. My group is called CLL Support Group Ages 50 and Under. I co-admin that with another girl, Sabrina Foxworthy, she’s in Winnipeg, Canada. We have a screening tool for getting people on our page who want to get on the page.

We do like that you are diagnosed before you are 50. We felt that we needed a group, that we have different needs. The people who are 70 and 80, we need many decades of remission. We have people are pregnant; people who have small children going through CLL. I’ve had CLL since April 1st, 2016 and I just turned 40 years old.

Andrew Schorr:                  

How you doing?

Heidi Yates:                         

I’m doing good, yes.

Andrew Schorr:                   

Okay. Let’s continue with our discussion. So, people of all ages all around the U.S. and certainly people maybe watching all around the world. We wanted to really go over the themes of what these administrators are hearing. So, Jay, let’s deal with a couple real quick. So, you’ve told me that lifestyle. In other words, people, what can I do? What can I eat, what exercise can I do, how can I keep my head on straight? That’s one of the things people wonder about a lot, right?

Jay Blatt:                               

Absolutely. I would not be fibbing if I was to say I get probably close to five emails or Facebook messages a day now. People asking, “What can I do? My doctor has no recognition of diet being in anyway necessary, and I feel that I need to eat better, because I just don’t feel good.” So, it’s a very big topic, and exercise is a big topic. Every week, if you look at how many threads are put up, exercise and nutrition tend to be within the top five topics being discussed every day. So, it’s important.

Andrew Schorr:                   

Okay. Jeff, people come to you and they want to know—they’re often worried right now with all new therapies about cost. This is a very current issue, particularly with the oral medicines, depending upon what insurance you have, correct?

Jeff Folloder:                            

Correct. This is an ongoing and ever-evolving topic on CLL Support Group. I suspect most of the other groups as well. The older treatments modes, whether you’re talking about standard chemo or even FCR, have been embraced for a long time by the insurance companies, and their costs are somewhat reasonable.

But the new drugs that are coming out that are getting a lot play, a lot of shouting from the manufacturers and the medical community. Some of these drugs just have eye-watering monthly costs. It can be very disheartening to have someone come on CLL Support Group and say, “My doctor wants to put me on drug X, but it’s $10,000 a month or it’s $12,000 a month. Will my insurance cover it? Will Medicare cover it?” These are scary things for a lot of people.

Andrew Schorr:                    

Do you think there’s a better understanding of assistance programs, whether the drug company has assistance programs or The Leukemia & Lymphoma Society or some other group, Jeff?

Jeff Folloder:                           

Yeah. I’ll use my wife’s favorite word and that would be candor. In all candor, I think that the medical community, the manufacturers and a lot of the support organizations have just barely shown the tip of the iceberg as far as what is available, how to get it and how to get it to the people that desperately need it.

I know there are programs available from drug manufacturers. I know there are programs available from organizations like The Leukemia & Lymphoma Society. But by in large, most people don’t know that a simple online questionnaire can get them significant help with their monthly costs.

Andrew Schorr:                   

Right or, Jay, that there might be somebody at their clinic, a financial navigator who can help them. Jeff, so cost is a big issue. Insurance issues on your group too, right?

Jeff Folloder:                          

It’s not just a big issue, it’s scary. Seeing a post, I think it was just 48 hours ago where someone was saying, “I live in the UK; I need this particular drug to save my life. It’s not currently covered by the National Health Plan, and I have to choose between my house and my drug.” They actually said, “I’m choosing to leave equity for my children, so I'm going to do without the drug.” I was horrified.

Andrew Schorr:                    

Jay, you’re hearing the same thing, right?

Jay Blatt:                             

I’m hearing it every day, someone says, “Well, gee. You know, I finally got this together and I’m going to start this new acalabrutinib (Calquence) trial. It’s going to run me out of my pocket $18,000 a year and I can’t afford that; I’m only earning $40,000 a year.” You tell them, I say, “Go directly to the supplier or the manufacturer of the drug, the drug company.” They go and the drug company says, “Sorry, you’re on Medicare. We can’t really help you.”

So, the message hasn’t gotten out, and we really need to have people that can just sit with a CLL patient in the beginning. Right when they’re getting treatment and tell them what they can do to get the money to be able to afford the treatment. It’s a big issue.

Andrew Schorr:                   

All right. Let’s back up for a minute. So, Heidi, you have younger people—I was 45 when I was diagnosed, so I get it—who are just trying to make sense of this diagnosis and it’s something they’ve never heard of and I’m sure you’d never heard of. What are their options, and who might be knowledgeable to help them? That’s a prime topic for your people, right? Who do I go to who’s knowledgeable? You apparently experienced it yourself, maybe you could talk about that. Then how do you get the right care?

Heidi Yates:                    

Okay, yes. Our group is definitely a little more intimate. We have 285 members on our Facebook page. People when they hear the word cancer, we all equate it with breast cancer and acute cancer. You think, I’ve got young kids running around. I need to do this chemo; I need to do whatever I need to do. We go see the local hematologist that whoever diagnoses us, an ENT diagnosed me.

A lymph node in my neck; a biopsy. I go to this hematologist, everyone—I don’t live in a small town, Memphis, Tennessee is a large city. Renowned cancer center here, and I was given a chemotherapy and an immunotherapy, two days’ worth called BR. A friend of mine who is an OB/GYN called me up and just said, “This doesn’t sit well with me. CLL is usually in older people, and will you go get a second opinion?”

Here I was just doing everything that I felt like I needed to do. I had an 8-year-old at the time, let’s get this out of me. I go there and they say, “No, we haven’t used that in over a decade, there are other options.” So, I think that’s something we try to stress when people have questions. Is that you have some time, you can take a breath and get with the right doctor. There are a lot of treatment options. I am in treatment now; I’ve been treated three different times now. Yeah, that’s a good point about the drug manufacturers. I don’t think a lot of people realize you can get assistance there.

Andrew Schorr:                  

No. So, there’s a lot to talk about related to cost and insurance. Okay, so there you get to a healthcare team that is a good one for you, that you have faith in, and then they start doing tests. Many of us have maybe found out that we had an infection or something like that your white blood count. But these guys look at a long list of things and how we’re doing. So, Jeff, I understand that people are often struggling to figure out what the hell did their test results mean, right?

Jeff Folloder:                           

Well, I think that that question pops up in our group. It pops up in Jay’s group and Heidi’s group. Frankly, anywhere else we’re talking about cancer. Like you said, Andrew, the list of test results—it’s worse than a CVS receipt right now. I just got my stuff back from MD Anderson on the My Chart thing. It just keeps going and going and going, and I’m hoping that there’s going to be a little coupon at the end of it, there never is.

I haven’t really wrapped my head around the why of it. People get their test results; people get the numbers and they get all these finite results, and they’d rather come to Facebook than talk to their doctor about what those results mean. You want to take a deep breath, because somebody says, “Oh my goodness, my white blood cell count is 32,000.” You want to say, “So, what are the other numbers, and did you ask your doctor if 32,000 was important?”

All four of us understand that any one number by itself, not that big a deal. In combination with other things, can be a very big deal or no problem at all. So, again, I guess the question is how do we as group leaders impress upon the membership, ask the question there in the office? You’re paying for their time, get the answer from the expert.

Andrew Schorr:               

Jay, you’ve been nodding your head. So, that’s a big theme for your group too, right? They’re writing you, “Hey, Jay. My white count is this, my lymphocytes this. What do I do, Dr. Jay?”

Jay Blatt:                            

It’s really funny, because you try and answer people in a way where you can’t cause trouble for them, get their hopes up falsely. I always say, “Look, here’s the deal. I know that when you’re first diagnosed, your first instinct is, "Oh my God, white blood cell.” That’s sometimes what they look at, they look at WBC. They don’t look at the other very important values. I say, “Look, there are people walking around with 250,000 white blood cell count, and they are feeling great. They don’t have very bad symptoms, or they have no symptoms, or their symptoms are mild. They are still untreated. So, the one to look at is your absolute lymphocyte count.”

They’re always concerned; people come on constantly. Jeff will say this; Heidi will tell you. They come on, they say, “I just went, and my white blood cell count went from five to seven in six months. What am I going to do?” You try and go back, and you calm them down, and then I don’t know about you guys.

But I get instantly three people a day asking me, “What does this mean, what does having it go from seven to 10?” The thing is you have to tell them, “Look, you have to look at the long term. Go through four or five different tests, see what happens. It’s slow, gradual change and don’t even worry about your absolute lymphocyte count until it hits 30.” So, that happens all the time.

Andrew Schorr:                    

Right. Heidi, you have people where all this is new, and it was for you. Is this theme of trying to just understand what this testing, what your options are? Just struggling to make sense of it, this is a big topic.

Heidi Yates:                        

It’s a huge topic. I do think a lot of the doctors' appointments are just very overwhelming. I try to encourage people to voice memo every time they’re in there, because when you leave typically, you’re overwhelmed. There’s a lot of anxiety, you don’t know what was said. So, we encourage people to record their appointment with their doctor and listen back. I know I’ve even listened back and caught things I didn’t even know he said.

So, yes, Sabrina and I both have young children. So, we can’t spend as much time deciphering everyone’s lab values for everybody. But we do encourage them, “Hey, calm down. Just because your white count went up, maybe you had a cold last month.” I think we try to take a breather and not every single thing that happens to you is CLL.

Andrew Schorr:                 

So, Jay, people are struggling with the blessing of more options. So, Heidi, you were on acalabrutinib, after you were on ibrutinib (Imbruvica). I’ve been on obinutuzumab or Gazyva when I was retreated. Jeff, you’re waiting to see what’s up with you and the same thing with Jay. You were on an ofatumumab (Arzerra) years ago and now we have a whole alphabet soup of new combinations they’re talking about. So, Jay, how do you help people? Is that a big topic, people talking about, “Gee, what about this one, what about that one?” Then they throw in what’s gotten a lot of buzz for the sickest people so far, chimeric antigen receptor T-cell therapy, CAR T-cell therapy. It’s like my God, that’s overwhelming, none of us are doctors.

Jay Blatt:                             

Yeah. Well, one thing if you spend your day doing about an hour-and-a- half as an administrator of a CLL site. You’re bound to pick up some tidbits of information. So, I tell people they need to understand that certain drugs are going to have more benefits for particular CLL subsets. That calms them down and then you tell them, “Look, here’s the good about these drugs.” So, you can pick this information up, it’s something you can research.  

I say, “First off, if you’re going to go to your doctor you’ve got to ask these questions. Well, what’s my particular CLL subset? What will taking this drug do for me today, and how will it impact me in the future? Will I be able to go on another drug trial if this drug, I outgrow it, or I fail the drug trial, you know, that particular drug.” Then they start to calm down a bit, because they realize it’s like a game of chess. You do one thing; you beat the opponent back. You do another thing; you beat the opponent back.

They calm down, but it is a scary thing to people, because initially, many people simply don’t follow the medical jargon, they don’t want to. They put all their faith in the doctors, but the people who do the research, they tend to get—it’s a double-edged sword. They either get very calm or they get more scared, but it’s best to be aware of what your opportunities are.

Andrew Schorr:                     

Well, we believe knowledge is power. Jeff, what do you do to help people decipher these options, including options that may only at this point be in clinical trials? Because, while we’re blessed with a number of CLL approaches now. All of them have to be in trials first.

Jeff Folloder:                         

Correct. Just to tag onto what Jay was saying. All these new drugs and all these clinical trials that are out there right now can be overwhelming. On a regular basis I think we all hear, “My doctor didn’t mention that drug. My doctor didn’t talk about this trial. My doctor didn’t do this, that or the other thing.”

I think one of the things that we’ve all been very careful about. When a patient is progressing through their CLL journey and their counts are going up and the matrix of the symptoms is becoming a bigger burden. We all tell people, “You’re going to be best served if you at least once, go see a CLL specialist. You don’t have to see them continuously, but you need to get a CLL specialist involved in your treatment. So, that you can be aware of what is new, what is cutting, what is in clinical trials.” The clinical trial thing for me at least, was a huge part of my program.

I had gone to Houston’s MD Anderson Hospital, and I was just expecting to get the best care possible. I learned that there was a level beyond best care. I learned about clinical trials. I always very carefully couch the statement; I say that a clinical trial may give you access to some of the best care possible with the least amount of side effects with the greatest chance of success before anybody else can get their hands on it.

That’s 180 degrees from the typical mindset on these groups of clinical trial is guinea pig. We as administrators know it’s not necessarily a guinea pig situation. So, calmly communicating the mindset of, “Ask about clinical trials. See what’s available for you to participate in.” It’s kind of a big deal.

Andrew Schorr:                   

Right, always ask about it. Folks, let me share just a brief story. As we record this, this past weekend. I was in Jeff’s home state; I was in Austin, Texas. I had the chance to meet a guy who’s in the same clinical trial that I was in 20 years ago. The fludarabine-cyclophosphamide-rituximab (Fludara-Cytoxan-Rituxan) Phase II trial.

Jeff Folloder:                           

The FCR gold standard. Sorry for talking over you.

Andrew Schorr:                 

That’s okay. I had a 17-year remission, and then I was treated again, but this fella, Nick, he’s still in remission. There’s no sign of the disease. So, that brings up the hope especially for—well, all of us, but, Heidi, your people hopefully with a long, long life. We’re a little older, we got a little bit of gray hair. That you will be cured. Like this guy maybe was cured with FCR. But even with these newer drugs, is that something you all talk about? How do I not just beat it back, like Jay was saying, But how do we—do we have the hope of a cure?

Heidi Yates:                         

I think that’s all we ever talk about. Is where is the cure, where is it? We want to find it. The greatest thing about our page is I know—and Jay, I know he feels the same way, is I've met such smart, incredible people from here to Australia to Canada. How much I've learned from them and just information they find out about such and such drug gets me to MRD-negative. So, then you want to look up that drug and ask your doctor about that drug. So, yeah, the cure. We’re all hoping for that four-letter word.

Andrew Schorr:                     

What about you, Jeff? Cure comes up there too?

Jeff Folloder:                         

Well, yes it does. CLL Support Group has been around for quite some time, and I’ll be the first to admit that when I first started participating in it. Nobody mentioned the word cure. I mean, the word cure was something that simply was not brought up. Because every one of our doctors said, “This is most likely a cancer that you will live with, but not die from.” Which was somewhat patronizing, but I understood what they were trying to say.

As we’ve gone through this past decade, we’ve morphed from, “We can treat it so that you can live with it.” To some people may very well be cured from this—the patient you were talking about in Austin, he may be cured. There may be people sitting in the waiting room at MD Anderson on the eighth floor who are actually cured of their CLL. We don’t have enough information right now, so we are telling people in all honesty, there are new drugs coming out every moment. One of them might be your cure, even if it doesn’t work for the person sitting next to you.  

Andrew Schorr:                

Or a drug combination, like the ones in trials. So, Jay, people worry about whether another shoe could drop. I understand this comes up sometimes on you group. What I mean by that in CLL is a more aggressive situation called Richter’s transformation—not that common, but there are people in your group who worry about it, right?

Jay Blatt:                             

Yeah. I have to say that because, again, we have so many high-profile patients that went into Richter’s and started getting CAR T. That this is—they’ve contributed greatly, because now we’re all talking about Richter’s. It’s a very scary situation and the topic comes up all the time, “What do I do?” Thankfully, we can say they’re now looking at certain drugs that can possibly ease the Richter’s type of situation and get you through it.

We also, thanks to Patient Power, I’ve been able to send people to a couple of your videos from Richter’s patients who’ve survived. It’s a scary thing, but I think that we’re picking up momentum and the CLL specialists and researchers are really doing a pretty good job now trying to figure out a way to handle it.

Andrew Schorr:                 

So, Jeff, is some of what goes on in your group people sharing hope?

Jeff Folloder:                       

Absolutely. I see so many friendships develop on the support group. It’s not just people checking in for information or posting a status report, it’s people sharing on a very personal level. I mean, because of what I've been doing on the Facebook group. I feel like pointing at Heidi and saying, “Hey, Heidi. By the way, I was in my mid-40s when I got diagnosed with CLL. My youngest daughter has now graduated from college, already working her first full-time job as a teacher here in the Houston area. My wife and I are looking at being retired adults at some point and going and playing.”

So, that whole thing of living life as it should be, living it well and being able to laugh on a regular basis. It can be and is part of the CLL experience. And that’s not just clinical stuff that goes back and forth in these groups. These are friends talking with other friends and helping them through the ugly stuff and the good stuff.

Andrew Schorr:                    

Well said. So, Heidi, you have children, right?

Heidi Yates:                         

I have one little boy who will be 12 tomorrow.

Jeff Folloder:                        

Rock on.

Andrew Schorr:                    

Happy birthday to them. So, you have younger people with active lives, jobs, families, and they’re diagnosed with this thing they’ve never heard of probably. They want to know they can hopefully lead a normal and an active life. They may have a doctor who tells them, “In CLL, we usually watch it for a while unless it’s very aggressive.” How do you help people through this process? Maybe watching and worrying, trying to go on with their life and then getting to the right care. In this intimate group you describe, helping them know they’re not alone.

Heidi Yates:                        

Absolutely. Sabrina and I talk about we feel like we have a master’s in psychology now with how much support we provide. I’ve been to MD Anderson as well, like Jeff. I connected with another girl on our page in Houston, and we’ve met for lunch a couple of times. I think it’s just people want to—it’s like we’re holding their hand. They don’t have anyone else in their world that they can relate to, and it’s like they’ve found a world they can relate to.

I had one doctor tell me, “Look at this like you’re diabetic.” That really stuck with me. Diabetes is a serious condition as well. But it can be managed and lived with. I think that’s just how we try to look at it and calm people down. Try to look at it a little bit that way. We have some time here, there are medications, we can manage this and we’re here to help you do that.

Andrew Schoorr:                

Well, thank you for what you do. Jay, I just want to get a final comment from you and from everybody. So, how welcoming is your group? Sometimes there are people who are afraid to post something. They think they’ll get shot down, or they’re worried. They just don’t even want to reveal themselves, or they’re very private about it. How comfortable can people be posting and that there’s support for them?

Jay Blatt:                             

I don’t know how the other admins handle this, but we have the rules of the road, just like I'm sure Jeff does, and Heidi does to a certain extent. One rule is that you can discuss anything as long as you discuss it in a way that’s kind and somewhat scientific. You do not have to worry about anybody on my forum. There is no such thing as a personal attack, there’s no bringing politics from other groups to ours. We don’t take ours and bring them to other groups. That’s one of the rules.

So, people feel like they can say something, because they see if somebody harasses someone. People have very different opinions and as long as we can act like kind, mature adults trying to help each other, you can discuss anything. So, no, we don’t have—I think some people are naturally scared to say something, because they’re afraid they’ll look like they’re foolish. They don’t understand what they’re talking about necessarily. But in general, people feel pretty confident to be able to post, at least on my group.

Andrew Schorr:                   

Jeff, how about your group?

Jeff Folloder:                         

Well, one of the most important things that people ask about on a daily basis is the concept of privacy on a social media support group. We are very diligent letting people know that our particular support group is considered private—which means you have to ask to gain membership, you have to be vetted so that you’re a qualified member of the group.

But more importantly, joining the group does not mean that people who are your friends get to see everything that you’re talking about in the group. So, one of the first questions, “If I post on CLL Support Group, will all my friends find out that I'm in there?” The answer is no. Like Jay said, quite frankly managing any social media forum, whether it be a bulletin board or a dedicated forum or a Facebook group.

It’s sort of like herding kittens on a daily basis, a continuous and daily basis. There are always going to be issues that come up. There are always going to be things that the administrator of the group has to be the wizard behind the curtains taking care of.

No matter how hard you try, spammers will get in and we make those goes away. No matter how hard you try, people will occasionally get into fights with each other, and we have to bring them back into the real world. We encourage people to ask questions. We encourage people to stay focused on CLL. The only bad question quite frankly, is the one that doesn’t get asked. So, with a little bit of keeping the herded kittens within the white lines, things tend to work out pretty well—even for 6,200 plus people.

Andrew Schorr:

Heidi, a final comment from you about the way you operate your group, and how people, younger people, who have family issues and work issues and all of that. Where they feel it’s a safe space for people like them?

Heidi Yates:                       

Yeah. When you go to our page, we have rules listed and questions that you have to answer that Sabrina and I review. Page rules for us—no political discussions, no religious discussions, no solicitation of any member, no selling of products, no harassment, bullying or any sexual advancements.

I do think Sabrina and I, we’re very protective of our group. If somebody doesn’t answer questions, we decline it. We want you to answer the questions and the questions are just how old were you when you were diagnosed, etcetera? I think Sabrina and I and a couple of more of the leaders on the page, we provide hope to people. I worked as a registered dietitian for 10 years. I own two exercise franchises now, as well as being a mother and a dog mom too, that’s important.

I think it gives them—it’s inspiring for them to see that we’re doing that. Sabrina is a social worker in Canada, she has a 2-year-old little boy and a stepson. When we start getting to know people personally it’s like, “Wow, she can do all of this too. I can as well.” I think we’ve really kind of talked people off the ledge many times, “You’ve got this, and we’re here for you.”

Jeff Folloder:                            

I’d like to throw in one little bit, Andrew. You may not have recognized this, because all three of us are on the Facebook groups as administrators. There is an awful lot of conversation that goes on behind the scenes—when Jay is having a problem in his group, when I'm having a problem in my group, when Heidi is having a problem in her group, “Hey, keep your eyes out for this. How should we deal with this?”

We all may approach the subject of CLL from slightly different perspectives, but our goal is the best patient journey possible. So, we give each other help all the time. This is not a me against them or them against me. This is how can we all do a better job?

Andrew Schorr:                     

Well, just from my perspective as kind of an old man living with CLL. I just want to thank you in this world of social media and as more and more people find your groups and others too. In this collaboration that goes on, we are so blessed in CLL that we have newer and better treatments, very active clinical trials. If you get to one, very devoted physician, researchers and clinics now that are very on top of this. More sophisticated testing in hope and then your channels trying to help people have a place to interact and know that they’re not alone.

I know it means a lot to me, so I want to thank you. So, Jay, thank you for suggesting that we bring everybody together in this People are Talking series. So, we’re going to do it again, okay? We can invite people’s questions; you can always send them to cll@patientpower.info. You can suggest interviews we should be doing with experts or inspiring people, and questions that we should be posing to the leaders of groups. Jay, thank you so much for all you do out there in New York. New York, where I used to live.

Jay Blatt:                             

Thank you, Andrew, and thanks, everybody.

Andrew Schorr:                     

Jeff Folloder, thank you. Good luck with whatever treatment you and your doctors decide. Heidi, all the best with the kid, the dog, the family and the younger people with CLL. Thank you for being with us everybody. 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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