Published on November 19, 2018
What’s it like to be diagnosed with chronic lymphocytic leukemia (CLL) at the peak of your career, newly married or with small children? During this CLL Patient Café, Patient Power founders Esther and Andrew Schorr are joined by a panel of CLL patients including Jeff Folloder, Michele Nadeem-Baker and Jeff Brochstein to share their stories and discuss how people in their 40s and 50s can cope with cancer while balancing the responsibilities of a full, and sometimes stressful, life. The panel walks through their mid-life diagnosis, the impact on their partner and family, and dealing with work-related stress, and provides advice to help others become empowered and remain positive on their journey with CLL.
This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support.
Transcript | CLL Patient Café: Tools for Facing a Mid-Life CLL Diagnosis
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.
Hi there. Thank you for joining our Patient Cafe today sponsored by the Patient Empowerment Network. I'm Esther Schorr, and today I'm meeting virtually with a group of CLL patients, chronic lymphocytic leukemia, who are all facing this diagnosis during their middle years. So, of course, there's no really good time to be diagnosed with something serious or diagnosed at all, and it's never easy and it's never welcome, but in our middle years the career ball, your personal life direction, the people that you indirect with, the relationships you have are already pretty well in progress, and a diagnosis can feel as though personal and professional life kind of had a monkey wrench thrown into it and that your plans for life could be derailed.
Our guests today are going to share their stories and advice about how they've been able to deal with a mid-life diagnosis. So just before we start I want you to know that this conversation is never, would not be a replacement for medical care, medical advice. Each patient's situation is unique, so I really encourage you to consult your own doctor, your own medical team for the treatment that's right for you.
So first of all, I just wanted to tell you a little bit of where I fit into this conversation. My husband, Andrew, who you're going to meet in a second, was diagnosed with CLL in his mid-40s, and at the time we had two small children.
Also, we were in the middle of growing a fledgling business that then became what we do now in educating patients. And we were devastated. It was scary. We didn't know what the complications long-term were, we even wanted to have a third child at the time, and certainly, like most people, we didn't know anything about CLL. We didn't know. And the word "leukemia" was very frightening. We were very lucky at the time. We had supportive family and friends, and we found great medical care through networking with other people on the internet, through online support groups, etcetera. And ultimately Andrew got through a clinical trial, went into it, went through the trial and had a long remission, and we're very, very thankful for that.
As a care partner, I will tell you it's taken years of ups and downs for me emotionally to come to terms with the fact that we can't really live our life based on what-ifs.
And we've gone on together with our friends, our family, and we just live our life. We now live in Southern California near the beach with our dog, and we have three grown kids who are very supportive, and—but we've learned a lot along the way. And so I'm hoping that this discussion will help those of you that may be in similar circumstance to kind of come to a place where you can move on with your life and feel empowered. Is that's my story. I want to have each of our guests introduce themselves. So why don't start. Jeff, Jeff Folloder, why don't you start.
Hi. I'm Jeff Folloder from Katy, Texas, which is just outside of Houston. I am a CLL patient, and I am also a Patient Power advocate, champion, evangelist, pick one of the terms, whichever one you're comfortable with. I was diagnosed at 46 years of age.
I absolutely, positively was not expecting to hear my doctor say something's wrong and you need to go see a specialist. Walked into the specialist's office, saw a bunch of old, sick people in there, said this isn't me, and the next day I was told, yes, it is. So my diagnosis did absolutely come as something of a huge shock. It was like a sucker punch in the gut, and it took me a bit of time to figure out has comes next.
I was very fortunate to get connected with some folks here in Houston who got me enrolled in a clinical trial after two, two and a half years of watch and wait. I got six and a half years of rock solid remission out of my clinical trial. This past July I have recently relapsed, and I'm looking at it right now quite frankly as no big deal.
I'll get treated when it's time to get treated. In the meantime, I'm driving all over the country, I'm doing all kinds of things. I'm living life to the fullest, and it's actually okay to take a nap.
Thanks, Jeff, that's perfect, and we'll talk more about that journey for you in a minute.
Let's try the other person, Andrew, and then we'll hit Michelle and Jeff.
Esther, thank you for hosting this program. So you recall vividly I had a routine blood test at age 45, and the doctor initially said when he tested my blood, oh, you're probably fine because I had been getting some nosebleeds, and then he called me, and he said you're not fine. What is it? Leukemia. What is leukemia? I wasn't even sure it was a cancer. And I also didn't understand the difference between acute leukemia and chronic leukemia.
And so what knowing I'd heard somewhat about acute leukemia then, Esther, you and I, remember, we walked in the park in a sunny spring afternoon near Seattle, and I thought I was dead. And I was saying at 45, we have two kids, hopefully you'll be well provided for, and I had life insurance. Is that it?
Well, fortunately, it hasn't worked out that way, and I got a long remission, pretty long, Jeff, 17 years, actually and then needed CLL treatment again many months ago, and that's worked well. So just like what Jeff said, knocking it back, going on with my life. We had a third child, but when I was first diagnosed I thought it was over, but now looking back I know it was really just the beginning, but maybe seeing life a little differently but living.
You thank you. Thank you for that, Andrew. Michelle, tell us a little bit about you.
Hi. I'm Michele Nadeem-Baker, and I'm a Patient Power advocate as well and a Patient Power patient reporter. And I have to say, as Jeff had mentioned, I was in shock, absolute shock, no awe, but in shock when I was told that I had CLL. My PCP like everyone else's had said that my white blood counts were a bit off, told me to see a hematologist, and I was very naive not realizing hematologists generally went along with oncology.
Went to the local medical center when I lived in Miami and was not told I had CLL, and then I was called back in for when some other test results came in, the flow cytometry came in, which I now know but at the time had no clue what that meant, had no clue what the doctor was talking about. He didn't even—he said I had the C word. He didn't even say cancer. And then he said CLL. I had to ask what that meant.
And that's why I've been such an advocate for communicating better for patients, because I was a bit dumbfounded as well as in shock. He had no information to give me, and I have since tried to learn a lot and become an advocate for other patients. Patient Power has helped immensely as I've—you know, Andrew is the first person I met with CLL. I reached right out to him, but it was very tough.
I had been married at that point for only two years to my now husband, and it was a real, real shock. My career went into a tumble, a turmoil, and it got put on hold for a while. So I was in watch and wait for about three years. In that time I moved back to Boston, so I could be seen at Dana-Farber. And as both Jeff and Andrew said, life does go on. You just—you have to get into kind of a new step and a new rhythm, but life does go on thankfully and thanks to all the research that's been going on.
And I'm still on a clinical trial. Still in remission. Fingers crossed that will continue. And I'm happy to chat about anything that will help.
Right. We'll have a lot to talk about, I think. Thank you, Michelle. And the other Jeff, tell us a little bit about where you're from and where you're at now.
Will do, Esther. Thanks again for having me. Really, my story follows much of the same path. Diagnosed at a fairly young age, 38 years old. I discovered a small lymph node in my neck while I was washing up one Sunday night back in late 2012 and got it checked out and couple months later high white blood cell count, and another high white blood cell count when I was tested again, and I was diagnosed. And really from there I just buried myself in just doing all the research and all the data gathering that I could.
Maybe about three, four months after diagnosis I discovered Patient Power. I found Andrew. I gradually started corresponding with him. From that point on, the next four and a half years I was in watch and wait until probably late 2016, early 2017. Reached out to Andrew again at that point. We had a conversation about FCR, which my doctors here in Atlanta had been talking to me about. Decided to go to MD Anderson after seeing some of the videos on Patient Power of Dr. Keating, Dr. Thompson. Went there to see actually Dr. Thompson who had mentioned ibrutinib and some of the other targeted therapies that had been just approved for frontline. And came back to Atlanta and my doctor and I kind of came to the conclusion that maybe starting with one of the targeted therapies was probably best me being unmutated.
And started ibrutinib (Imbruvica) March 2017 and lymph nodes went away after a week and kind of been in remission pretty much ever since and everything's going well.
Thank you, Jeff. And all of you, there are some recurrent themes here that we'll talk about, but obviously this whole idea of coming into the middle of your life when a lot of things were already in play was something that you had to pretty quickly say, okay, what am I dealing with and then figure out how do you continue with what you were already doing and how does it fit in.
So I want to dig into that a little bit more, and I'd like to start with you, Michelle. And tell me if I'm wrong, but my understanding is that when you were first diagnosed you were really in a pretty high-level executive position in PR and communications, and how did you cope with the diagnosis in the middle of a very busy professional life?
It was—it was not easy, and that part still isn't easy. I've been trying to still come to terms years later with that. I was at a height of my career in a dream job, and I knew that I could no longer stay in that job because it meant staying in Florida, and I needed to move back home where my family was and my husband was. We had a long-distance marriage because of career. It made me realize what's really important in life, and that's to be with family, but I was able to then continue using parts of my career in other ways and to help, as Andrew did. You're doing very similar things yet now you're doing it to help patients, and that's what I've been trying to do. You're a great mentor, Andrew. And so it, yes, it was very difficult when it comes in terms of that and as well as income and being used to being a high income earner and then not having that.
So how did you make—so can you share how you made that transition? It sounds like you moved closer to family.
And career-wise what helped you make that transition?
I had to give up my job and my career. And I was well-known in Florida, and I moved back up to Boston. I needed to remake connections from when I lived and worked here. And I've been consulting ever since versus within a company and a full-time job. So trying to use what I do best, just communicate and go and help others. And what's been happening is I found that it's been mostly in life sciences and related fields.
Okay. Thank you. You know, you mentioned Andrew. Andrew, did you want to speak a little bit about that transition that you had to make because we were at the time sort of building—well, sort of. We were building a business and a family at the same time.
Can you share a little bit about what it took for you to make the change that you did?
Sure. Well, I think—we were fortunate. We were already working in health communications. Michelle has sort of made that transition, and Jeff too actually is spending a lot of time doing that. So you kind of—for us, you know, Esther, you and I I think accelerated in what we were doing. I think for Jeff and Michelle they've sort of joined in where you can leverage what you're learning as a patient to help others, and that's very satisfying. And fortunately now with the internet we can to some degree do it on our schedule.
So sometime we're tired. Sometime we're distracted—not distracted, that's not fair, but we have doctor visits. We have bone marrow biopsies. We have other things. I get IVIG, monthly infusions. So how do you juggle all that?
And I think we learned to do that. At least that's what I've done, and I think it's been satisfying that we can communicate with others, and it's part of who we are. Never wanted the diagnosis of CLL, no, no, no, but if you have it how can you go forward and do that? And I know both Jeffs are involved in helping other patients as Michelle is too, so that's part of it.
Thank you. So, Jeffs, any additional comments or points you want to make about this?
As someone who is probably I think out of everybody here who is maybe less in a patient advocacy role, I mean, I've done it a few times, I'm always open to who, you know, Andrew sends me in terms of young people who are diagnosed who want to speak to someone with whom they can share experiences with, you know. I'm an IT projects manager. It's not necessarily boiler room type work but it's still, it's pretty fast-paced.
It's pretty intense at the times. One thing that I've really experienced in terms of just first firsthand trying to deal with having CLL and making all the appointments, the bone marrow biopsies, the routine blood work, you know, I tend to—I don't openly communicate my condition to everyone at work, but I've been lucky and I've been blessed to have pretty decent managers who I directly reported to ever since diagnosis, and they've been just very accommodating and understanding. And in some regard they have to be, but I've been lucky enough to find that in the workplace, and that's been really, really great.
Okay. And actually that's a great segue, because the next thing I was going to ask about was how each you have handled communication with family and friends about the diagnosis. That's a very personal thing. There are some people who are way out there and, gee, we don't know anybody like that, but it's a really personal thing. So maybe Jeff, Jeff Folloder, how did you handle that initially, and has that changed over time?
Well, I never hid my cancer diagnosis from anyone. I believe in the very first Patient Power event that I did I talked about the mistake that I made with my cancer diagnosis. I told my family. I told my wife. I told my daughters. I told my friends. But I kind of sort of forgot to tell my daughters that my CLL wasn't considered hereditary, and my daughters kind of sort of flipped out for a significant period of time until I learned, wow, I should probably let them know what exactly is going on so that they can stop worrying a little bit.
And I did. And so now I make sure that people understand what it is that I think they need to hear. I don't tell everyone the gory details of my CLL experience. Some people I tell, yes, I've got cancer. I'm a survivor, or I'm in remission, or I've relapsed. And the people I care about, I make sure they understand what's really going on and how it affects me.
And at this point some almost nine years after diagnosis, and I know this is going to sound very counterintuitive, cancer gave me an awful lot of opportunity. I would have not had the ability to pull the hand break up on my life and reprioritize everything without a cancer diagnosis. I was moving too fast. Concentrating on the wrong things. Spending my energy on the wrong things. Now I focus on the right things.
And as Andrew is fond of saying, I've learned how to live well, and that's because I've learned from everyone involved with Patient Power.
Wow. Well, thank you. Michelle, Jeff B, Andrew, other commentary about how you communicated or chose not to communicate?
I did the opposite. Because—probably because my career included crisis communications I was afraid if once I let out the info it would be career suicide, which is a very sad thought when you think of society. But instead now I'm trying to change that, that thought has that's out there, that you still can be viable when you have a cancer diagnosis, which everyone here is proof of. But I was very afraid of that, that that would ruin my career.
As a matter of fact, I did not come, you know, out until I started in the infusion room and reported for Patient Power from it each time.
I was in infusion with the FCR part of my trial. So it dawned on me that in the past I had worked with the American Cancer Society and convinced people to come out about their cancer and explain to other patients. And I felt somewhat like a hypocrite that I did not, and I realized it was time. It was really time to do that. And it wasn't only about me. It was about others as well. And that really helped empower me a lot.
And also as Jeff has said and I was saying before, it really does help you prioritize what is right, the right things to be spending your time on, because I was on the hamster wheel of career and never sleeping, and this forced me, I had to. And as you said, naps aren't a bad thing. I had to learn that, too. So it does help in certain ways, although it's not a great way to have to learn the lesson. It is what we have, so you have to make lemonade out of lemons, and I think that's what all of us here have been doing.